After the October surgery and the very hopeful signs during the operation, it was difficult to wait until the day when we would return to Fort Worth for the DBS to be turned on. That day finally arrived this week, and we made our way south on Tuesday, Nov. 13. During our multi-hour visit, various settings were tried on each of the four contact points in the new location (STN). The most promising setting was identified, and we saw Adam being able to stand, take steps, and move his arm and hand with more control. Before we left we discussed a return to PT and OT, possible use of braces for his elbow and ankle/leg, and a follow-up appointment in January. We also were instructed in one setting change that we would be able to make at home.
When we left Fort Worth we were cautiously optimistic about the success of this new placement.
The first day after returning home, Adam felt that the benefits from the DBS were holding for the most part, with perhaps less effectiveness noticed by the evening. The second day, he felt that all of the affected muscles had tightened back up, and felt similar to how they had prior to having the device turned on.
While this was disappointing (especially in its similarity to the pattern we saw of initial benefit followed by a return to the baseline during the previous round of DBS), we are all trying to keep a very optimistic outlook and to remember that it is very early in the programming for the new location. We have been told before that the full benefit of the DBS won't likely become evident for a few weeks, and may take several months to a year to fully develop.
For now, we are working on re-starting PT and OT, doing stretches at home, and Adam is very much looking forward to the successful end of his first semester at college!
Friday, November 16, 2012
Sunday, October 21, 2012
Wrapping things up
By the end of the day Friday, we weren't certain how things were going to play out for the remainder of the weekend. We had been told that there was a chance of being released on Saturday, but since we had stayed for two nights following the previous surgery, that didn't really seem likely. And then when Adam had a seizure Friday night, followed by another one on Saturday morning, it seemed even less likely.
When the on-call neurosurgeon (Dr. Donohue...the same one that had performed Adam's November 2011 surgeries) checked in with us on Saturday, he was concerned about the two seizures, and called for a CT scan to verify that something more dire (hemorrhaging, DBS lead out of place, etc.) was not occurring. At that point, we pretty much assumed that we should settle in for another night.
Adam was feeling much better, and we took the opportunity to get a little exercise by patrolling the halls with Tiger Monkey and Rockem' Sockem' Monkey in tow.
At some point before lunch, the neurosurgery nurse practitioner stopped in and let us know that the scans had been read by the radiologist and that she had been able to peek at them and nothing dire was showing up. That was good news, but we still weren't quite prepared for the visit by Dr. Marks (the movement disorder neurologist) a little bit later who told us that he felt that Adam was ready to go home!
Brian hustled back to the Ronald McDonald House to clean up the room and check out, and by 4:00 pm we were on the road north.
Adam has been released to return to school on Monday as long as he doesn't participate in anything too rowdy, so he will have managed to squeeze in brain surgery on fall break without missing any additional classes! That is some serious dedication to his studies!!!
We won't know for a little time if this placement of the lead will be effective or not. At this point we have a tentative appointment to return for the initial programming on November 13, and we'll be keeping our fingers crossed for good results. We'll keep you posted!
Friday, October 19, 2012
The Hat that Heals? or Whole Lotta' Knittin' Going On
Although not completely finished, the brain hat has already become quite a conversation piece around town! It has been a labor of love that has involved quite a number of people, and I'd like to share the story of how it came to be.
It all started with a photo of a knitted brain hat that Auntie Sharon shared with Adam via Facebook. It was suggested that it would be a worthy project for us, and a rather appropriate one as well! While I entertained the thought of just seeing how close I could come by looking at the photo, I decided to go ahead and see if I could track down the pattern since we were fairly close to the next surgery and it would be fun to have a finished product to wear to his pre-surgery appointments.
Being the savvy searcher of information that I am, I was able to track down the pattern on a stitchery social media site called Ravelry. The pattern was for sale for a modest amount, and since the designer identified herself as a poor med student, I felt inclined to go ahead and pay for the pattern. I even sent a brief message letting the designer know that I was making the hat in honor of Adam's next neurosurgery, and she let me know that she wished us well and appreciated knowing how the pattern was going to be used. If anyone is interested, here is the link to her page: http://www.ravelry.com/patterns/library/brain-hat-knitting-pattern-not-actual-hat (I'm not sure if you can get to the page without an account).
I left the next day for a week long trek to the northwest to visit family, and was able to pick up the supplies I needed at a fun little yarn store in Silverdale, WA. The yarn I found wasn't exactly the "brainy-pinkish-peachish" that Adam and I had discussed, but instead it was a variegated yarn that included a peach color and graduated to a darker red that the lady at the yarn store thought could be a good match for dried blood. I had filled her in on the project I was planning for, as well as who I was making it for and we both agreed that dried blood was an appropriate color to use.
The pattern called for using circular knitting needles which was new for me, but fortunately, Carol's friend Keri was coming over for a craft time and she was able to get me going with this new technique. As I worked away on building up the stitches on the cap, I thought it might be fun to get some other knitters involved in the project and so eventually family and friends Carol, Chad, Jacynda, Matthew, Caleb, Brian, and Susan all added some stitches. Adam also assisted by helping to place and pin the loops to make the brain decoration.
While I was still in the northwest, I talked to Jacynda one day over the phone and explained the project to her. It sounded familiar to her, and she thought that she had seen another student wearing a hat like that at her school. Her medical school. Yep...it turned out that it was the same woman who had designed the hat and posted it online! She is one year behind Jacynda in school, and so they knew each other. Talk about small world coincidences!!!
Although not completely finished (yes, Mike, Adam indeed only had half-a-brain), the hat came down to Fort Worth with us for the surgery, and was indeed proudly worn for the pre-op appointment. Adam's surgeon fully supported our choice of projects, although he did have suggestions about the color (he would have preferred as close to the natural color as possible), and adding specific modifications that would reflect the surgeries that Adam has already had. Adam and I mentioned our idea of sewing a bead on to symbolize the top of the lead that is part of the DBS system--he approved. Adam's primary movement disorder neurologist also approved of the hat, and actually kind of liked the fact that it only had half of the squiggles sewed on, giving it the look of a hemispherectomy. (Oh, those neurologists and their sense of humor!)
I kept knitting on the remaining cord throughout the time that we spent in the surgical waiting area, which is also rather fitting.
So there you have it...the story of the brain hat with all of the people that have played a role in its creation! I hope I didn't forget to mention any names...if I did, please chalk it up to my lack of sleep and not a lack of appreciation! And as to the power of healing that the hat may provide? Well, Adam is feeling much better this evening (post-surgery), so I'm thinking that it has the power of love knitted and embedded into every stitch by many people and that seems to be the best healing agent of all!
It all started with a photo of a knitted brain hat that Auntie Sharon shared with Adam via Facebook. It was suggested that it would be a worthy project for us, and a rather appropriate one as well! While I entertained the thought of just seeing how close I could come by looking at the photo, I decided to go ahead and see if I could track down the pattern since we were fairly close to the next surgery and it would be fun to have a finished product to wear to his pre-surgery appointments.
Being the savvy searcher of information that I am, I was able to track down the pattern on a stitchery social media site called Ravelry. The pattern was for sale for a modest amount, and since the designer identified herself as a poor med student, I felt inclined to go ahead and pay for the pattern. I even sent a brief message letting the designer know that I was making the hat in honor of Adam's next neurosurgery, and she let me know that she wished us well and appreciated knowing how the pattern was going to be used. If anyone is interested, here is the link to her page: http://www.ravelry.com/patterns/library/brain-hat-knitting-pattern-not-actual-hat (I'm not sure if you can get to the page without an account).
I left the next day for a week long trek to the northwest to visit family, and was able to pick up the supplies I needed at a fun little yarn store in Silverdale, WA. The yarn I found wasn't exactly the "brainy-pinkish-peachish" that Adam and I had discussed, but instead it was a variegated yarn that included a peach color and graduated to a darker red that the lady at the yarn store thought could be a good match for dried blood. I had filled her in on the project I was planning for, as well as who I was making it for and we both agreed that dried blood was an appropriate color to use.
The pattern called for using circular knitting needles which was new for me, but fortunately, Carol's friend Keri was coming over for a craft time and she was able to get me going with this new technique. As I worked away on building up the stitches on the cap, I thought it might be fun to get some other knitters involved in the project and so eventually family and friends Carol, Chad, Jacynda, Matthew, Caleb, Brian, and Susan all added some stitches. Adam also assisted by helping to place and pin the loops to make the brain decoration.
While I was still in the northwest, I talked to Jacynda one day over the phone and explained the project to her. It sounded familiar to her, and she thought that she had seen another student wearing a hat like that at her school. Her medical school. Yep...it turned out that it was the same woman who had designed the hat and posted it online! She is one year behind Jacynda in school, and so they knew each other. Talk about small world coincidences!!!
Although not completely finished (yes, Mike, Adam indeed only had half-a-brain), the hat came down to Fort Worth with us for the surgery, and was indeed proudly worn for the pre-op appointment. Adam's surgeon fully supported our choice of projects, although he did have suggestions about the color (he would have preferred as close to the natural color as possible), and adding specific modifications that would reflect the surgeries that Adam has already had. Adam and I mentioned our idea of sewing a bead on to symbolize the top of the lead that is part of the DBS system--he approved. Adam's primary movement disorder neurologist also approved of the hat, and actually kind of liked the fact that it only had half of the squiggles sewed on, giving it the look of a hemispherectomy. (Oh, those neurologists and their sense of humor!)
I kept knitting on the remaining cord throughout the time that we spent in the surgical waiting area, which is also rather fitting.
So there you have it...the story of the brain hat with all of the people that have played a role in its creation! I hope I didn't forget to mention any names...if I did, please chalk it up to my lack of sleep and not a lack of appreciation! And as to the power of healing that the hat may provide? Well, Adam is feeling much better this evening (post-surgery), so I'm thinking that it has the power of love knitted and embedded into every stitch by many people and that seems to be the best healing agent of all!
Deja deja deja ... vu
Here we are in Ft Worth again!
First off a quick review. Adam had DBS surgery late last March, they turned it on in mid April, we went back for adjustments in May and June and then for a more extended period in Aug. He had periods of nice benefit. The classic trajectory with DBS for Dystonia is for it to take time for the full benefit to develop with the effects often being modest at one week and then better at one month and better yet at three months on up six months to a year. The pattern we experienced was quite different in that he had some good improvements but they would peak 1-2 weeks after an adjustment. Then the dystonic tone (contractions) would start to come back, more sporadic at first and then eventually more solidly. We went through a couple of cycles of this and the benefits seemed to last a shorter period each time. This process peaked in our August visit where we were checked in down here for the better part of a week. After trying some much more complicated settings they hit a spot where he was a lot better again. But it lasted about 6 hrs and then it faded yet again. That was a fairly low point, although it was important in that it was a chance for the doctors to see and measure for themselves the pattern we were seeing.
As you might guess there have been a lot of ups and downs this spring and summer. And that is why blog posts have been a bit thin as well. I have some good video footage from 'before' DBS and then some nice 'after' video when he was doing better. My original vision was to continue documenting his improvement and perhaps even put together a YouTube showing his journey. I am still glad I have the footage and will do something with it someday regardless, but being on the roller coaster changes your perspective and focus. What seems like a fun project on the way up, loses it's appeal and goes on the back burner while you are falling back down. This brain stuff is tricky - the movie 'Awakenings' with Robin Williams comes to mind - although our changes have been nowhere near as profound as those.
In the meantime, it has been a great fall. Adam really enjoys the smaller campus of NSU and is doing very well in college. He still has not had a seizure since June 20. So he is back up to 4 months without a seizure. His recent record for seizure-free is the first 4.5 months after the Nov 2011 surgery. With some shifts in medication timing and use of the 'extended release' version of his main seizure med perhaps were are finally approaching a point where we can call them under control. Certainly the 3 seizures he has had in the last 11.5 months is by far the lowest he's had since he started (used to be 10 times that number).
So back to being in Ft Worth again. After the August visit our doctor became convinced that the original target area (the GPI) was just too damaged by Adam's stroke to be an effective DBS site. There are three targets for DBS that we have learned about; the GPI, the STN, and the Thalamus. The GPI is the classic target for Dystonia in young people (which is why they started there) with the STN as an alternate. DBS is also done a lot in older patients for essential tremor/Parkinson's and there the STN is the primary target with the GPI as secondary. The Thalamus I think is newer altogether. Basically, they just haven't done a lot of cases like Adam, where the Dystonia is a secondary effect of a stroke or stroke-like damage. They have done one case where they switched to using the STN and had great luck and another where they had no luck. So there we are. We can keep the brain we have or try to go for the brain behind door number 2. (Let's Make a Deal reference for you younger folks out there). The fact that he had some success with the GPI is a sign perhaps that the condition is capable of being improved.
Today was the surgery day. Adam did really well and everything went fine. As it turned out the first surgery we did for epilepsy was by far the hardest on his system. He bounced back much quicker for the DBS surgery last March. He is likely to do the same or better this time. He didn't need to miss any class since he had two days off for fall break and he's hoping to be back in class on Monday. The doctors don't see any reason why that shouldn't be the case. If you've never had brain surgery, I know it sounds like a big deal but you get used to it. Actually there wasn't that much to this one. Last time they made a nickel size burr hole in the skull and then left a plug device there in its place. This time they were able to use the same hole. They removed the DBS electrode from last time and placed a new one in the new location (same access hole, different trajectory). Basically it is a matter of sliding this long skinny device in between the folds of the brain surface down to the target area. He will be able to use the same control box that is under the skin of his chest so there was a lot less tunneling of wire this time as well. Another thing we learned is that the recovery is also quicker and less painful in these because they don't have to cut through any muscle layers. Evidently that is a big factor in the recovery process in say an abdominal surgery. But once you cut through the scalp skin, the skull is right there.
Adam is on the high end of the age range they usually work with here and he has a reputation for catching them off guard with his wry comments and humor. When Dr Marks came out to talk to us after the surgery he told us another Adam comment that cracked everybody up. He needs to be alert during parts of the process so they interact with the patient a fair amount. Last time he told them having the burr hole drilled felt like having his face pushed into a running massage chair. This time as they asked him a series of yes/no questions he said that normally he would answer a question like that by nodding his head. They thought this was pretty funny coming from someone whose head is mounted into an immobilizing frame specifically so that they can precisely guide equipment and cross reference with the MRI scan data.
When they place the leads they do a few things: they 'listen' for the brain's own activity there, then they stimulate the area and have the patient move to see if they can see any impact and they make sure that no odd side effect were triggered. They like what they saw on all three counts. They felt his arm moved a lot better when they stimulated the spot but we have learned not to put a lot of stock in this yet. And the main thing they want to see now is a lack of side effects.
We are about 9 hrs post surgery now. He napped a lot in the afternoon, but ate a hardy dinner and is resting watching some TV now. We have an MRI in the morning, see the doctor and then maybe get released tomorrow or Sunday morning!
First off a quick review. Adam had DBS surgery late last March, they turned it on in mid April, we went back for adjustments in May and June and then for a more extended period in Aug. He had periods of nice benefit. The classic trajectory with DBS for Dystonia is for it to take time for the full benefit to develop with the effects often being modest at one week and then better at one month and better yet at three months on up six months to a year. The pattern we experienced was quite different in that he had some good improvements but they would peak 1-2 weeks after an adjustment. Then the dystonic tone (contractions) would start to come back, more sporadic at first and then eventually more solidly. We went through a couple of cycles of this and the benefits seemed to last a shorter period each time. This process peaked in our August visit where we were checked in down here for the better part of a week. After trying some much more complicated settings they hit a spot where he was a lot better again. But it lasted about 6 hrs and then it faded yet again. That was a fairly low point, although it was important in that it was a chance for the doctors to see and measure for themselves the pattern we were seeing.
As you might guess there have been a lot of ups and downs this spring and summer. And that is why blog posts have been a bit thin as well. I have some good video footage from 'before' DBS and then some nice 'after' video when he was doing better. My original vision was to continue documenting his improvement and perhaps even put together a YouTube showing his journey. I am still glad I have the footage and will do something with it someday regardless, but being on the roller coaster changes your perspective and focus. What seems like a fun project on the way up, loses it's appeal and goes on the back burner while you are falling back down. This brain stuff is tricky - the movie 'Awakenings' with Robin Williams comes to mind - although our changes have been nowhere near as profound as those.
In the meantime, it has been a great fall. Adam really enjoys the smaller campus of NSU and is doing very well in college. He still has not had a seizure since June 20. So he is back up to 4 months without a seizure. His recent record for seizure-free is the first 4.5 months after the Nov 2011 surgery. With some shifts in medication timing and use of the 'extended release' version of his main seizure med perhaps were are finally approaching a point where we can call them under control. Certainly the 3 seizures he has had in the last 11.5 months is by far the lowest he's had since he started (used to be 10 times that number).
So back to being in Ft Worth again. After the August visit our doctor became convinced that the original target area (the GPI) was just too damaged by Adam's stroke to be an effective DBS site. There are three targets for DBS that we have learned about; the GPI, the STN, and the Thalamus. The GPI is the classic target for Dystonia in young people (which is why they started there) with the STN as an alternate. DBS is also done a lot in older patients for essential tremor/Parkinson's and there the STN is the primary target with the GPI as secondary. The Thalamus I think is newer altogether. Basically, they just haven't done a lot of cases like Adam, where the Dystonia is a secondary effect of a stroke or stroke-like damage. They have done one case where they switched to using the STN and had great luck and another where they had no luck. So there we are. We can keep the brain we have or try to go for the brain behind door number 2. (Let's Make a Deal reference for you younger folks out there). The fact that he had some success with the GPI is a sign perhaps that the condition is capable of being improved.
Today was the surgery day. Adam did really well and everything went fine. As it turned out the first surgery we did for epilepsy was by far the hardest on his system. He bounced back much quicker for the DBS surgery last March. He is likely to do the same or better this time. He didn't need to miss any class since he had two days off for fall break and he's hoping to be back in class on Monday. The doctors don't see any reason why that shouldn't be the case. If you've never had brain surgery, I know it sounds like a big deal but you get used to it. Actually there wasn't that much to this one. Last time they made a nickel size burr hole in the skull and then left a plug device there in its place. This time they were able to use the same hole. They removed the DBS electrode from last time and placed a new one in the new location (same access hole, different trajectory). Basically it is a matter of sliding this long skinny device in between the folds of the brain surface down to the target area. He will be able to use the same control box that is under the skin of his chest so there was a lot less tunneling of wire this time as well. Another thing we learned is that the recovery is also quicker and less painful in these because they don't have to cut through any muscle layers. Evidently that is a big factor in the recovery process in say an abdominal surgery. But once you cut through the scalp skin, the skull is right there.
Adam is on the high end of the age range they usually work with here and he has a reputation for catching them off guard with his wry comments and humor. When Dr Marks came out to talk to us after the surgery he told us another Adam comment that cracked everybody up. He needs to be alert during parts of the process so they interact with the patient a fair amount. Last time he told them having the burr hole drilled felt like having his face pushed into a running massage chair. This time as they asked him a series of yes/no questions he said that normally he would answer a question like that by nodding his head. They thought this was pretty funny coming from someone whose head is mounted into an immobilizing frame specifically so that they can precisely guide equipment and cross reference with the MRI scan data.
When they place the leads they do a few things: they 'listen' for the brain's own activity there, then they stimulate the area and have the patient move to see if they can see any impact and they make sure that no odd side effect were triggered. They like what they saw on all three counts. They felt his arm moved a lot better when they stimulated the spot but we have learned not to put a lot of stock in this yet. And the main thing they want to see now is a lack of side effects.
We are about 9 hrs post surgery now. He napped a lot in the afternoon, but ate a hardy dinner and is resting watching some TV now. We have an MRI in the morning, see the doctor and then maybe get released tomorrow or Sunday morning!
Tuesday, September 11, 2012
Update time again
We've been back to Fort Worth to spend time with some of our favorite medical personnel, and have a little further information to share.
First, the really pretty exciting news is that Adam has only had 3 seizures since we left the hospital after his epilepsy surgery last November. That is pretty amazing! All three of them happened on days when he was either extra tired or late on a dose of medication...so possibly avoidable. He has been on an extended release version of his medication for about a month, and the hope is that will help to cover slight variations in the time he takes his meds. Still...this is really pretty incredible since he had averaged 1-2 per month prior to the surgery.
Second, as we've been reporting, there really haven't been sustained positive results from the DBS that was implanted in March. After lots of tests and adjustments of the current implant, Dr. Marks is now recommending a second implant. He will consult with the neurosurgeon further, but the possibilities that they are looking at are 1) keeping the current implant in place (GPi) and adding a second implant in the STN, 2) removing the current implant (in the GPI location), and adding two implants in two new locations...one in the STN, and a second one in the thalamus. We may not know which option they recommend until the day of the surgery. At one point they were also discussing adding a lead to the opposite side of the brain...but the MEG scan that he had in August does not show a need for that option.
At one point recently, it was suggested that the surgery might happen as quickly as next week, but we learned that wasn't going to work out for all of the folks involved. Instead, he will most likely be having the surgery on Friday, Oct. 19. This works out really nicely for us since it is Adam's fall break, and he won't miss as many class sessions. At this point we're scheduled to return for programming on Tuesday, Oct. 30, which is Brian's birthday. Kind of fitting since we drove down to Fort Worth on Peggy's birthday for the most recent appointment which was the following morning. I guess this is the year of medical birthday celebrations!
We'll be adding more information when we know more...probably not until we go for the surgery in October. Until then, happy brain health everyone!
First, the really pretty exciting news is that Adam has only had 3 seizures since we left the hospital after his epilepsy surgery last November. That is pretty amazing! All three of them happened on days when he was either extra tired or late on a dose of medication...so possibly avoidable. He has been on an extended release version of his medication for about a month, and the hope is that will help to cover slight variations in the time he takes his meds. Still...this is really pretty incredible since he had averaged 1-2 per month prior to the surgery.
Second, as we've been reporting, there really haven't been sustained positive results from the DBS that was implanted in March. After lots of tests and adjustments of the current implant, Dr. Marks is now recommending a second implant. He will consult with the neurosurgeon further, but the possibilities that they are looking at are 1) keeping the current implant in place (GPi) and adding a second implant in the STN, 2) removing the current implant (in the GPI location), and adding two implants in two new locations...one in the STN, and a second one in the thalamus. We may not know which option they recommend until the day of the surgery. At one point they were also discussing adding a lead to the opposite side of the brain...but the MEG scan that he had in August does not show a need for that option.
At one point recently, it was suggested that the surgery might happen as quickly as next week, but we learned that wasn't going to work out for all of the folks involved. Instead, he will most likely be having the surgery on Friday, Oct. 19. This works out really nicely for us since it is Adam's fall break, and he won't miss as many class sessions. At this point we're scheduled to return for programming on Tuesday, Oct. 30, which is Brian's birthday. Kind of fitting since we drove down to Fort Worth on Peggy's birthday for the most recent appointment which was the following morning. I guess this is the year of medical birthday celebrations!
We'll be adding more information when we know more...probably not until we go for the surgery in October. Until then, happy brain health everyone!
Saturday, August 11, 2012
On the road again...
We made it home! We did end the week with a last visit with Dr. Marks, and a confirmation that the DBS in its current position was not providing much (if any) improvement in Adam's muscle tone and mobility. We did see glimpses along the way, such as the day he took steps down the hall at the hospital. But the positive effect faded in a few hours, and the only other time we saw an improvement after an adjustment to the settings it only lasted a few minutes.
The current thinking is that the lead placement in the internal Globus Pallidus (GPi) turned out not to be a good location for Adam. It is the more common placement for dystonia patients, but since Adam's damage is in the same area, it appears that this doesn't work in his case. Dr. Marks is currently thinking that it might be beneficial to place a second lead in the subthalamic nucleus (STN). Some patients have benefited from having leads in both places. He will be meeting with the on-site team, and we will be going back down to Fort Worth in about a month to discuss it further.
So as we suspected, we left the hospital with some disappointments and some hope. We've been down this road before, and are determined to continue to keep our collective chins up and work toward the best possible outcome. What a long, strange trip it's been!
And speaking of long strange trips, here we are getting ready to leave the hospital.
On our way out Adam wanted to stop and take this picture for his uncles. There are a number of gardens in and around the hospital. This one (called the Family Garden) specifically has a dedication 'in honor of all the uncles in every family'. Must be a story associated with that, although we don't know what it is.
The current thinking is that the lead placement in the internal Globus Pallidus (GPi) turned out not to be a good location for Adam. It is the more common placement for dystonia patients, but since Adam's damage is in the same area, it appears that this doesn't work in his case. Dr. Marks is currently thinking that it might be beneficial to place a second lead in the subthalamic nucleus (STN). Some patients have benefited from having leads in both places. He will be meeting with the on-site team, and we will be going back down to Fort Worth in about a month to discuss it further.
So as we suspected, we left the hospital with some disappointments and some hope. We've been down this road before, and are determined to continue to keep our collective chins up and work toward the best possible outcome. What a long, strange trip it's been!
And speaking of long strange trips, here we are getting ready to leave the hospital.
On our way out Adam wanted to stop and take this picture for his uncles. There are a number of gardens in and around the hospital. This one (called the Family Garden) specifically has a dedication 'in honor of all the uncles in every family'. Must be a story associated with that, although we don't know what it is.
Friday, August 10, 2012
If I only had a brain...
Great news! After today's scans (and MRI and MEG), we can verify that Adam definitely has a brain! OK, maybe we did know that already...from numerous scans in the past, but always nice to know it is still intact and working.
As far as the other news...not such clear results. We'll learn more about the results of the MEG scan tomorrow when we have our last conference (for this visit) with Dr. Marks. At the moment, Adam's DBS is turned off, and there really isn't a strong distinction between having it on or off at this point. The scans were able to verify that the DBS lead was still in the correct place, which addressed one question of possible shifting that might have explained some of the problems with effectiveness. It is unclear at this point if they will turn the device back on before we leave or not. Pretty much up to Adam at this point.
As for the future, Adam's team will meet and confer over the new information gathered on this visit. One possible approach might be to add a second lead (and a second generator). This has been at least partially effective with some other patients that are similar to Adam. We won't know for certain if this will be the recommended path until the team meets and then we come back for a future appointment.
Our short term plan is that Adam will be discharged from the hospital tomorrow (Saturday) and then we will have a couple of days to help him get ready for his first day of classes at NSU!
As far as the other news...not such clear results. We'll learn more about the results of the MEG scan tomorrow when we have our last conference (for this visit) with Dr. Marks. At the moment, Adam's DBS is turned off, and there really isn't a strong distinction between having it on or off at this point. The scans were able to verify that the DBS lead was still in the correct place, which addressed one question of possible shifting that might have explained some of the problems with effectiveness. It is unclear at this point if they will turn the device back on before we leave or not. Pretty much up to Adam at this point.
As for the future, Adam's team will meet and confer over the new information gathered on this visit. One possible approach might be to add a second lead (and a second generator). This has been at least partially effective with some other patients that are similar to Adam. We won't know for certain if this will be the recommended path until the team meets and then we come back for a future appointment.
Our short term plan is that Adam will be discharged from the hospital tomorrow (Saturday) and then we will have a couple of days to help him get ready for his first day of classes at NSU!
Thursday, August 9, 2012
Same old, same old...
By the time you have spent a few days in the hospital, things begin to settle in to a routine. As we move past the mid-point of the week we realize that we're starting to fall into the swing of the hospital schedule. The current plan is that Adam will be released on Saturday, but there are still a few things that will be finished up over the next day and a half.
Today Adam had an evaluation with the speech therapist, and she had some good suggestions for helping with times when he is having difficulties getting his thoughts out. He also finished up with the neuropsych evaluation which is a follow-up from the initial pre-surgery evaluation that took place last summer. They want to verify that the surgeries didn't have any negative effects on cognitive processing. He also had another round of adjustments to the DBS with Dr. Marks to try to find the best possible settings.
Tomorrow will likely bring some sessions with physical and speech therapists, as well as a brain scan called Magnetoencephalography (MEG). He originally had a MEG scan four years ago in Memphis, and so this time they will be able to compare the results to the previous test. It's a pretty amazing device, with a vault-like room that blocks out all kinds of outside interference. If you are interested, here is the link to the Wikipedia article: http://en.wikipedia.org/wiki/Magnetoencephalography (yes, I know...a librarian citing a Wikipedia article...shameful!). They have only recently purchased and installed the MEG equipment and our doctor is curious to see how it works with a patient that already has a DBS installed. Hopefully it will be helpful in providing more information.
We're also planning on another meeting with Dr. Marks to discuss where things go from here. After the excitement of taking some steps and experiencing significant improvements in muscle tone and flexibility on Tuesday, things have pretty much reverted to the way that they had been prior to coming down for this visit. That was a real disappointment for all of us. When he tried different settings today on the DBS, Adam had another brief moment of improved tone, but it was only a short respite before everything returned once more to the previous state. We're not exactly sure where things stand currently, and what will be the plan as we move forward. Hopefully we will learn more tomorrow.
So...as we wind down towards the end of another hospital stay, we suspect that we may end this trip the way we have ended others, with many questions yet to be answered. This has been an interesting adventure, we are still learning much about the brain (and more specifically--Adam's brain), and certainly much about ourselves. Thanks for taking the journey with us!
Today Adam had an evaluation with the speech therapist, and she had some good suggestions for helping with times when he is having difficulties getting his thoughts out. He also finished up with the neuropsych evaluation which is a follow-up from the initial pre-surgery evaluation that took place last summer. They want to verify that the surgeries didn't have any negative effects on cognitive processing. He also had another round of adjustments to the DBS with Dr. Marks to try to find the best possible settings.
Tomorrow will likely bring some sessions with physical and speech therapists, as well as a brain scan called Magnetoencephalography (MEG). He originally had a MEG scan four years ago in Memphis, and so this time they will be able to compare the results to the previous test. It's a pretty amazing device, with a vault-like room that blocks out all kinds of outside interference. If you are interested, here is the link to the Wikipedia article: http://en.wikipedia.org/wiki/Magnetoencephalography (yes, I know...a librarian citing a Wikipedia article...shameful!). They have only recently purchased and installed the MEG equipment and our doctor is curious to see how it works with a patient that already has a DBS installed. Hopefully it will be helpful in providing more information.
We're also planning on another meeting with Dr. Marks to discuss where things go from here. After the excitement of taking some steps and experiencing significant improvements in muscle tone and flexibility on Tuesday, things have pretty much reverted to the way that they had been prior to coming down for this visit. That was a real disappointment for all of us. When he tried different settings today on the DBS, Adam had another brief moment of improved tone, but it was only a short respite before everything returned once more to the previous state. We're not exactly sure where things stand currently, and what will be the plan as we move forward. Hopefully we will learn more tomorrow.
So...as we wind down towards the end of another hospital stay, we suspect that we may end this trip the way we have ended others, with many questions yet to be answered. This has been an interesting adventure, we are still learning much about the brain (and more specifically--Adam's brain), and certainly much about ourselves. Thanks for taking the journey with us!
Wednesday, August 8, 2012
Chillin' at Cook's
Adam relaxing with Dr. Monkey and Rockem' Sockem' Monkey.
Not surprisingly...there has been a fair amount of room time since we arrived. Dr. Monkey and his medical staff have been keeping track of Adam while he is in the room, taking his vitals, making sure he is doing OK, and that he doesn't need anything. He also tracks Adam's activities, and makes sure that he is staying active.
We take advantage of the local 'craft' time.
Here Dr. Monkey is checking out the offerings of the Child Life department...today is arts and crafts. Lots of activities to keep Adam and the other patients occupied during their stay.
Adam's finished craft project being shown off by Dr. Monkey and Rockem' Sockem' Monkey.
Cool tote box, eh? Thanks to Child Life, Adam completed decorating this tote box with a scene from his creative imagination. It was originally going to be a knight and a dragon...but then things got interesting and the knight went after this unknown (and previously unseen) creature. Adam will have to fill us in on the biological information about the creature.
Tuesday, August 7, 2012
Day 2 and new programming
Adam taking steps with his medical entourage. And there was much rejoicing!
To catch you up a bit...on Monday, the main activities were getting checked in and doing some preliminary assessments by the physical and occupational therapists. They wanted to establish a baseline so that it would be easier to identify whatever changes (good or bad) occurred in his mobility and arm/hand use. We also had a brief visit with Dr. Marks (the movement disorder neurologist) who promised that we'd be seeing him again on Tuesday for the first round of adjustments. The day ended with us taking a few laps around the floor (Adam on his scooter), and watching a movie in the room.
Today (Tuesday) started early with adjustments to the DBS. Dr. Marks wanted to try some more complex adjustments that involve different settings for the arm and leg, and that was the approach that he tried today. The initial results looked promising, and indeed, by mid-day Adam was able to walk around the floor a bit with the physical therapist. The above picture shows part of that walk...with Dr. Marks (directly behind the therapist), MaryAnne (the main DBS adjustment nurse), and others in the fan section! It just happened that they showed up on the floor just as Adam was making his debut stroll and everyone stopped to cheer him on!
The day continued with additional physical therapy activities, preliminary work on the neuropsych evaluation, and some occupational therapy activities. Pretty worn out after all of the excitement, Adam ended the day with another movie. We're all looking forward to seeing what tomorrow will bring.
Monday, August 6, 2012
Dr. Monkey and colleague taking a short break during the packing process.
Welcome to Texas. And only 103 degrees today. And blue skies with a few clouds. You know its bad in Oklahoma when you go to Texas in Aug to escape the heat. Yesterday it got up to 113 in Tulsa before the smoke blotted out the sun. Positively apocalyptic.
Adam checked into his room in the rehab unit. And enjoying some hospital 'swag' in the form a Koala bear. I don't know anything about the Koala's medical training or background.
Saturday, August 4, 2012
The Year of Living Medically
Years ago I enjoyed a film called "The Year of Living Dangerously." It was the story of a young journalist who landed in the unfamiliar country of Indonesia during a time of turmoil. The things that were familiar were suddenly not available, new rules guided his decisions, and he did the best he could under the circumstances. Not a bad description of our year...substituting Fort Worth for Indonesia! We recently realized that with the upcoming week in Fort Worth, we will have spent more than a month on site at Cook's over the last 16 months. While we have great affection for Adam's medical team and nothing but praise for the care received, it just wasn't the "vacation" that we had in mind for this year. Certainly a learning experience, however!
Since the DBS surgery in March, Adam has returned to Fort Worth three times for adjustments to the settings on the brain stimulator device. He also worked through several weeks of physical and occupational therapy (PT & OT). There were positive signs along the way, some improvements of muscle tone and flexibility, but then eventually, we were pretty much back to where he was before the surgery.
Dr. Marks felt that it would be worth having Adam come back to town, be admitted to the rehab unit (we've not stayed there, before), and do a series of adjustments to the DBS while having the on-site PT and OT staff make assessments of his muscle tone. Since we'll be there anyway, they may run a couple of other tests, do a follow-up neuropsych exam, and possibly build a new leg brace. They may throw in a Botox treatment on his leg, too...since years have passed since they last tried that approach.
It should be a busy week, and hopefully a productive one! Dr. Monkey is making the trip with us, and we'll try for some new photos.
Since the DBS surgery in March, Adam has returned to Fort Worth three times for adjustments to the settings on the brain stimulator device. He also worked through several weeks of physical and occupational therapy (PT & OT). There were positive signs along the way, some improvements of muscle tone and flexibility, but then eventually, we were pretty much back to where he was before the surgery.
Dr. Marks felt that it would be worth having Adam come back to town, be admitted to the rehab unit (we've not stayed there, before), and do a series of adjustments to the DBS while having the on-site PT and OT staff make assessments of his muscle tone. Since we'll be there anyway, they may run a couple of other tests, do a follow-up neuropsych exam, and possibly build a new leg brace. They may throw in a Botox treatment on his leg, too...since years have passed since they last tried that approach.
It should be a busy week, and hopefully a productive one! Dr. Monkey is making the trip with us, and we'll try for some new photos.
Wednesday, May 16, 2012
Phase II...step by step
Sorry for the gap in information...our best intentions were to post earlier, but somehow that didn't quite happen.
We're now in a new phase of the process, having the DBS device "turned on" on April 18. That was an interesting process as there are four contact points on the DBS lead, and those can be programmed at different levels individually or together. The first programming session ran for a couple of hours with each point being tested independently and at varying strengths. At each strength, Adam performed different tasks, such as pointing and moving one finger, moving his hand from side to side, moving his foot, etc. It was a very meticulous process. The nurse, MaryAnn, ran most of the programming tests, with Dr. Marks poking his head in periodically to check on the progress. Once the testing was complete, the optimal setting was identified and the device was set to that setting. While the change wasn't nearly as dramatic as we might have hoped, we were informed that with dystonia it is very common to take weeks or even months to realize the full benefit of the DBS.
Adam did feel that there was a change in the muscle tone in both hand and foot as a result of the DBS being activated. Since he was likely to want to take more steps, we celebrated that evening by going shoe shopping to locate some shoes that provided more ankle support. The next day we had a brief follow-up visit with the neuro-surgeon as well as with the movement team, and were released to head home with instructions to begin both physical and occupational therapy (PT and OT).
We were thrilled to locate both PT and OT in one location...and in Tahlequah! Even more exciting was the fact that we were scheduled with an OT that we knew a little...the dad of one of Matthew's good friends. Adam started a three-times-per-week schedule of both PT and OT, with home exercises to continue the work. With several sessions under his belt, he is seeing improvement in both his leg/ankle/foot and arm/wrist/hand. Things are not moving as fast as any of us would prefer, so we are learning to be patient. Both of his therapists are pleased with his progress, and so we trust that they are seeing the subtle changes that are hard for us to notice. Adam is standing upright some each day, and even taking supported steps. The goal right now is to work on good positioning while standing, stepping, and sitting...getting his muscles to re-learn positions that are most helpful in order to move forward with daily tasks. Essentially, the DBS interferes with the neuro-messages that are pulling the muscles into contracted positions, and now the brain and muscles are re-learning the communication to return the muscle control to Adam's conscious choice.
The next visit to Fort Worth will be on May 29, and Adam's progress will be checked and the DBS programming adjusted as needed. We keep moving forward!
We're now in a new phase of the process, having the DBS device "turned on" on April 18. That was an interesting process as there are four contact points on the DBS lead, and those can be programmed at different levels individually or together. The first programming session ran for a couple of hours with each point being tested independently and at varying strengths. At each strength, Adam performed different tasks, such as pointing and moving one finger, moving his hand from side to side, moving his foot, etc. It was a very meticulous process. The nurse, MaryAnn, ran most of the programming tests, with Dr. Marks poking his head in periodically to check on the progress. Once the testing was complete, the optimal setting was identified and the device was set to that setting. While the change wasn't nearly as dramatic as we might have hoped, we were informed that with dystonia it is very common to take weeks or even months to realize the full benefit of the DBS.
Adam did feel that there was a change in the muscle tone in both hand and foot as a result of the DBS being activated. Since he was likely to want to take more steps, we celebrated that evening by going shoe shopping to locate some shoes that provided more ankle support. The next day we had a brief follow-up visit with the neuro-surgeon as well as with the movement team, and were released to head home with instructions to begin both physical and occupational therapy (PT and OT).
We were thrilled to locate both PT and OT in one location...and in Tahlequah! Even more exciting was the fact that we were scheduled with an OT that we knew a little...the dad of one of Matthew's good friends. Adam started a three-times-per-week schedule of both PT and OT, with home exercises to continue the work. With several sessions under his belt, he is seeing improvement in both his leg/ankle/foot and arm/wrist/hand. Things are not moving as fast as any of us would prefer, so we are learning to be patient. Both of his therapists are pleased with his progress, and so we trust that they are seeing the subtle changes that are hard for us to notice. Adam is standing upright some each day, and even taking supported steps. The goal right now is to work on good positioning while standing, stepping, and sitting...getting his muscles to re-learn positions that are most helpful in order to move forward with daily tasks. Essentially, the DBS interferes with the neuro-messages that are pulling the muscles into contracted positions, and now the brain and muscles are re-learning the communication to return the muscle control to Adam's conscious choice.
The next visit to Fort Worth will be on May 29, and Adam's progress will be checked and the DBS programming adjusted as needed. We keep moving forward!
Friday, March 30, 2012
Back Home.
This is how Adam feels about getting to go home today.
The rest of us feel the same way. All we did today was check out, but it still took until about noon to get there. Home by about 6 PM. We are all exhausted. Stay tuned for 'Phase II - Programming Adam' in just under 3 weeks when we see the results.
The rest of us feel the same way. All we did today was check out, but it still took until about noon to get there. Home by about 6 PM. We are all exhausted. Stay tuned for 'Phase II - Programming Adam' in just under 3 weeks when we see the results.
Thursday, March 29, 2012
Heading Home
Adam has been his old self again today. After sleeping most of yesterday and eating almost nothing, he was up at 5 AM today and ready for breakfast. He has been sitting up and using his kneewalker around the Ward and even down to the Build-A-Bear store. He didn't nap at all today and ate normally, but did turn in early finally at 10 PM. For awhile we thought they might even check us out late today, but we'll stay one more night and are good to go home tomorrow morning.
He still has all his scars and aches, but is ready to move on to the home recuperation phase. He is doing great. Both his neuro-surgeon and the movement specialist neurologist came by for visits. The movement specialist in particular is real happy with the placement of the electrodes as seen in this mornings 'after' MRI.
He still has all his scars and aches, but is ready to move on to the home recuperation phase. He is doing great. Both his neuro-surgeon and the movement specialist neurologist came by for visits. The movement specialist in particular is real happy with the placement of the electrodes as seen in this mornings 'after' MRI.
The Day After the Big Day
If you read yesterday's post, you know that we really didn't expect to see any huge dramatic changes today, since the device won't be turned on for a couple more weeks. And...we didn't. Now that might sound like it would be a little disappointing, but it is really OK. What we mainly felt today was relief...relief that the surgery phase was behind us, relief that the surgery was successful in implanting the leads in the target spot in the brain, relief that there were no apparent negative consequences of the surgery, and above all else, relief that Adam felt good enough today to eat, do a few laps around the 4th floor hallways, sit up for much of the afternoon and evening, and just be himself.
Dr. Monkey, Adam, and Rockem Sockem Monkey sharing some well-deserved R & R!
Adam did have a final MRI this morning, and we learned that all looked good with the lead placement and the brain itself. We met with both his neurologist and the neurosurgeon (as well as a host of other medical personnel), and the general consensus was that all had gone very well during surgery, and that Adam's recovery was going tremendously! It was hard to believe that the surgery was only a day ago by looking at Adam sitting up, eating regular meals, and staying awake all day.
While it was hinted that we might be discharged today, the doctors both felt that since we had a five hour drive ahead of us, it would be best to stay one more night, be released in the morning, and have a more comfortable drive home during the day. It wasn't hard to convince us of the logic of that approach.
As I write this post, Adam has already fallen asleep, and Brian and I aren't far behind. We look forward to heading home tomorrow and reacquainting ourselves with our rather regular and mundane schedules. And looking forward to the next phase of this process where the real excitement begins! The possibilities are thrilling!
Dr. Monkey, Adam, and Rockem Sockem Monkey sharing some well-deserved R & R!
Adam did have a final MRI this morning, and we learned that all looked good with the lead placement and the brain itself. We met with both his neurologist and the neurosurgeon (as well as a host of other medical personnel), and the general consensus was that all had gone very well during surgery, and that Adam's recovery was going tremendously! It was hard to believe that the surgery was only a day ago by looking at Adam sitting up, eating regular meals, and staying awake all day.
While it was hinted that we might be discharged today, the doctors both felt that since we had a five hour drive ahead of us, it would be best to stay one more night, be released in the morning, and have a more comfortable drive home during the day. It wasn't hard to convince us of the logic of that approach.
As I write this post, Adam has already fallen asleep, and Brian and I aren't far behind. We look forward to heading home tomorrow and reacquainting ourselves with our rather regular and mundane schedules. And looking forward to the next phase of this process where the real excitement begins! The possibilities are thrilling!
Wednesday, March 28, 2012
The Big Day
Today was the actual surgery day! We start 'dark' and early by getting up at 4 AM. Adam showers and then they gave us a special anti-septic cloth to wipe down his head and neck with afterwards. Reducing the risk of infection is a big theme for today. We take the 5 minute walk over to the hospital entering through the emergency room as that is the only public access at that time of day. We end up waiting in the wrong area for 30 minutes or so, but by 5:30 AM we are found and the preparations truly begin. They ask questions, take vitals, and start an IV connection in his hand. From 6 - 7, he is getting a heavy duty antibiotic through the IV. By this point he can kill bacteria from across the room just by looking at them! We see a variety of people and finally about 7:30 AM we are separated and the parents go off to do about 7 hrs of hard time in the waiting room and Adam goes off to surgery.
Those not into medical details might want to skip down a paragraph or two, but for the curious... This surgery is easier in some ways but also more complex in some ways, than Adam's November surgery. The hole in the skull will be much smaller (the size of a nickel) this time. But he needs to be awake for parts of this surgery, whereas he was under the entire time last time. They want very precise location control for the instruments, so the first thing they do is attach a wire frame thing around his head. They make four tiny incisions in the scalp and screw the frame into the skull. Adam is out for the bulk of this, but again he isn't put deep under for this procedure. They use a couple kinds of topical pain killers on the scalp, but once you are down to the skull and the brain itself there is no longer any pain sensation - paradoxically enough.
After the frame is in place, they do a quick MRI. I know they did one yesterday and they will do another tomorrow. If you have never had an MRI, I suppose it sounds like a big deal, but in this environment it is like having your temperature taken. Then they cut the small bore hole into the skull. Next comes the placement of the electrodes. This is the part where they need Adam to be awake. Awake is perhaps not the exact image to have; he was on Versed as well the whole time which is a little like laughing gas - puts you in a bit of a la la land. You still know what is going on and can help out when needed, but you do have some strong chemicals on your side. When the doctors came out afterwards they told us that he was very calm and did a great job through-out. His sense of humor surprised them (he's pretty quiet when you first meet him anyway - so they weren't prepared). The one comment we heard about that really tickled everyone was that he said having the hole bored into the skull (he was awake off and on for parts of that I guess) was like 'pushing his face into a massage chair'.
For the electrode placement they insert the thin wire/harness assembly thing deep into the brain. The usual brain region target for Dystonia is called the GPI. For kids with generalized Dystonia (that gradually effects the whole body) these structures often look normal and they insert a separate set of electrodes into the GPI on both sides of the brain. If you look up much on DBS (Deep Brain Stimulation) you'll find that the really dramatic, almost miracle response cases are these generalized Dystonia's that are probably genetic and the MRI's don't show any damage. Adam has what they call 'secondary' Dystonia, meaning that the Dystonia seems to be an effect of some other damage. In Adam's case, the GPI on one side looks normal but the other is damaged and much reduced in size. They have been using DBS for secondary Dystonia's for a shorter period of time and the results are not typically as dramatic. So for Adam they were trying to put the electrodes in just the damaged GPI. They did three 'passes' or position trials, which is a typical number. The first one gave no real response signal, the second one gave a pretty good signal and the third was worse again so they went back to the second location. To test the locations they activate the leads a little - they send in some sort of a signal. They want to see if they are affecting the things they want to affect. Again, you can see videos online where even at this point you get dramatic relaxation of a Dystonic posture, but that is more likely with generalized Dystonia and even then that is not necessarily to be expected nor what they are really looking for at this point. They want to see some movement in the areas they want to effect and they did. Dr Marks took a little video and they were having Adam wiggle his left foot a little in a way that we typically don't see. His hand seemed to be looser as well. Nothing hugely dramatic, but again they were not expecting that. The fact that there was some response tells them they are in the right place and it is the later programming and fine tuning where one hopes to really magnify these effects. The other important part on this electrode placement test is to make sure no other side effects are occurring. Sometimes when they activate the electrodes it can induce new spasticity or slurred speech and so on. In a nutshell the placement goal is to see some effects to the areas you want to change and nothing new that's bad. So on that score at least - mission accomplished!
After all that, they put him back under again to finish up. They have to run/thread/tunnel small wire leads across the skull, down the neck and into the small pace-maker like unit that is embedded under the skin on his chest.
About 2 PM we were finally reunited with Adam. He was in good spirits. It is now the evening. He has been resting a lot and dozing off and on. He's had a couple Popsicle's and some Gatorade. The signs are certainly there that the recovery will be quicker from this surgery than the one November. For one thing, we are not trying to blast him with seizures next - he can focus completely on getting better. He certainly has got some aches and pains. He has bandages over the four incisions on his head where the frame was screwed in, plus a bigger scar on his head where the leads were inserted and about a three inch or so scar on his chest were the little control unit was placed (about the size of a small slim flip phone). So even though everything went off without a hitch and the doctors were quite pleased with everything it has still been a pretty rough day for all.
We have an appointment already to come back in three weeks for the 'programming'. We leave here without the device actually being turned on yet. They want the patient to recover from the surgery and for the body/brain to settle back down. So while today was certainly a major landmark, the saga will continue for some time to come yet. Thanks to all for your thoughts and love!!
Those not into medical details might want to skip down a paragraph or two, but for the curious... This surgery is easier in some ways but also more complex in some ways, than Adam's November surgery. The hole in the skull will be much smaller (the size of a nickel) this time. But he needs to be awake for parts of this surgery, whereas he was under the entire time last time. They want very precise location control for the instruments, so the first thing they do is attach a wire frame thing around his head. They make four tiny incisions in the scalp and screw the frame into the skull. Adam is out for the bulk of this, but again he isn't put deep under for this procedure. They use a couple kinds of topical pain killers on the scalp, but once you are down to the skull and the brain itself there is no longer any pain sensation - paradoxically enough.
After the frame is in place, they do a quick MRI. I know they did one yesterday and they will do another tomorrow. If you have never had an MRI, I suppose it sounds like a big deal, but in this environment it is like having your temperature taken. Then they cut the small bore hole into the skull. Next comes the placement of the electrodes. This is the part where they need Adam to be awake. Awake is perhaps not the exact image to have; he was on Versed as well the whole time which is a little like laughing gas - puts you in a bit of a la la land. You still know what is going on and can help out when needed, but you do have some strong chemicals on your side. When the doctors came out afterwards they told us that he was very calm and did a great job through-out. His sense of humor surprised them (he's pretty quiet when you first meet him anyway - so they weren't prepared). The one comment we heard about that really tickled everyone was that he said having the hole bored into the skull (he was awake off and on for parts of that I guess) was like 'pushing his face into a massage chair'.
For the electrode placement they insert the thin wire/harness assembly thing deep into the brain. The usual brain region target for Dystonia is called the GPI. For kids with generalized Dystonia (that gradually effects the whole body) these structures often look normal and they insert a separate set of electrodes into the GPI on both sides of the brain. If you look up much on DBS (Deep Brain Stimulation) you'll find that the really dramatic, almost miracle response cases are these generalized Dystonia's that are probably genetic and the MRI's don't show any damage. Adam has what they call 'secondary' Dystonia, meaning that the Dystonia seems to be an effect of some other damage. In Adam's case, the GPI on one side looks normal but the other is damaged and much reduced in size. They have been using DBS for secondary Dystonia's for a shorter period of time and the results are not typically as dramatic. So for Adam they were trying to put the electrodes in just the damaged GPI. They did three 'passes' or position trials, which is a typical number. The first one gave no real response signal, the second one gave a pretty good signal and the third was worse again so they went back to the second location. To test the locations they activate the leads a little - they send in some sort of a signal. They want to see if they are affecting the things they want to affect. Again, you can see videos online where even at this point you get dramatic relaxation of a Dystonic posture, but that is more likely with generalized Dystonia and even then that is not necessarily to be expected nor what they are really looking for at this point. They want to see some movement in the areas they want to effect and they did. Dr Marks took a little video and they were having Adam wiggle his left foot a little in a way that we typically don't see. His hand seemed to be looser as well. Nothing hugely dramatic, but again they were not expecting that. The fact that there was some response tells them they are in the right place and it is the later programming and fine tuning where one hopes to really magnify these effects. The other important part on this electrode placement test is to make sure no other side effects are occurring. Sometimes when they activate the electrodes it can induce new spasticity or slurred speech and so on. In a nutshell the placement goal is to see some effects to the areas you want to change and nothing new that's bad. So on that score at least - mission accomplished!
After all that, they put him back under again to finish up. They have to run/thread/tunnel small wire leads across the skull, down the neck and into the small pace-maker like unit that is embedded under the skin on his chest.
About 2 PM we were finally reunited with Adam. He was in good spirits. It is now the evening. He has been resting a lot and dozing off and on. He's had a couple Popsicle's and some Gatorade. The signs are certainly there that the recovery will be quicker from this surgery than the one November. For one thing, we are not trying to blast him with seizures next - he can focus completely on getting better. He certainly has got some aches and pains. He has bandages over the four incisions on his head where the frame was screwed in, plus a bigger scar on his head where the leads were inserted and about a three inch or so scar on his chest were the little control unit was placed (about the size of a small slim flip phone). So even though everything went off without a hitch and the doctors were quite pleased with everything it has still been a pretty rough day for all.
We have an appointment already to come back in three weeks for the 'programming'. We leave here without the device actually being turned on yet. They want the patient to recover from the surgery and for the body/brain to settle back down. So while today was certainly a major landmark, the saga will continue for some time to come yet. Thanks to all for your thoughts and love!!
Tuesday, March 27, 2012
Go Team Adam!!!
Go Team Adam...go...go...go!!!OK, so many parts of the day we looked a little more like this:
It was a busy day today...we met the surgeon who will be performing the deep brain stimulation procedure, listened to various instructions, signed lots of forms, had lab work done, and finally an MRI. This took much of the day, and we were all pretty tired out (both mentally and physically) by the end of all of this. But...everything is good to go for surgery in the morning. Or actually the wee hours of the night, as we will start walking towards the hospital at around 4:45 to check in at 5:00 am! Surgery will actually begin around 7:30 am, and typically runs until early afternoon. I will be live-tweeting during the day, and will also try to post on Facebook periodically. I'll try to follow up tomorrow evening with a blog post--but no guarantees as to quality or quantity!
Following our medical visits, we were delighted to have a wonderful dinner this evening (they fixed us breakfast for dinner!) by probably the most gregarious group of volunteer chefs that we've seen this trip. It was a wonderful meal, and just the perfect end to the day.
Or...almost the end to the day! One more treat this evening as a therapy dog group visited the Ronald McDonald House with three wonderful dogs. Adam loved bonding with the dogs, and it gave us the perfect diversion this evening as we needed something to do rather than watch the clock and think about tomorrow's surgery. Meet a couple of the dogs below:
This is Titan...a loveable dog, and there certainly is plenty of him to love!
And this is Boomer. Boomer loves Adam, or at least the crumbs from dinner that may still cling to his face!Perfect ending to a long and tiring day! Next stop...neurosurgery!
Monday, March 26, 2012
Out and About
Our first full day in Fort Worth brought our initial appointments (all went well), lunch out on the town, resting out in the afternoon, and exploring the Ronald McDonald House in the evening.
We met with Dr. Hernandez in the morning--a follow-up from the fall surgery. He felt very good about the progress thus far, and referred to Adam's one seizure as a "freebie" since the day that it occurred had been so long and somewhat stressful on all of us. That was great news, as we weren't sure if the one seizure meant that it would be likely to lead to a returning pattern of regular seizure activity. We said brief hellos to the neuropsychologist (Dr. Gabriel) and the neurosurgeon who did the fall surgery (Dr. Donohue). In addition, one of the nurses carefully went over the consent document for the surgery itself...lots of information to take in. Good thing I'd stopped on the way to the appointment at the hospital Starbucks for a caramel machiatto!
Following all of the appointments we headed out and found a lovely little restaurant for lunch, Lili's Bistro, fairly near the hospital. The service was very friendly...and apologetic after our waitress dumped a glass of iced tea in my lap! She offered us a free dessert for our inconvenience, and we happily took her up on that...yum!!!
After a suitable resting out period in the afternoon, we enjoyed another dinner provided by the Ronald McDonald House volunteers. This is the most time that any of us have spent actually at the house, even though Brian has stayed here on both of our other week-long stays. It is really a wonderful resource for families--and a nice facility as well! There are about 40 rooms, which is bigger than I initially thought it might be. Dinner is provided every evening by local volunteers, snacks are usually available, and there are lots of spaces for families to congregate and spend time. Adam and I wandered about and took a few photos so that you can get a sense of how it looks around here.
Here we are! Settling in to our "home away from home."
Up on the 2nd level deck overlooking the inner courtyard/play space. Adam posing with one of the guard owls...supposedly meant to scare away other birds, which were actually fairly plentiful. :-)
Another view looking over the courtyard.
Brian and Adam enjoying the lovely and mild evening.
Lots of play equipment...Adam decided he was a little too big to play!
A lovely little statue in the courtyard...lots of memorial moments around the place. It is evident that that the house has been a meaningful haven for many families through the years...and their memories of little loved ones are tucked here and there. It feels celebratory rather than sad...and special to be sharing this space where so many families have experienced such a range of emotions while their children were being tended in the medical facilities nearby.
The halls are lined with fantastic photos of children being children! This is one of my favorite ones...Adam was willing to pose with this darling picture.
Lots of attention to detail...the game room has hand painted sports murals on the wall.
The main stairway down to the 1st floor entrance area. I love all of the natural wood!
I hope that you enjoyed our little photo tour of the Fort Worth Ronald McDonald House...and can picture us in our temporary home. We'll continue our adventures tomorrow with an appointment with the surgeon, pre-op procedures and instructions, and an MRI.
We met with Dr. Hernandez in the morning--a follow-up from the fall surgery. He felt very good about the progress thus far, and referred to Adam's one seizure as a "freebie" since the day that it occurred had been so long and somewhat stressful on all of us. That was great news, as we weren't sure if the one seizure meant that it would be likely to lead to a returning pattern of regular seizure activity. We said brief hellos to the neuropsychologist (Dr. Gabriel) and the neurosurgeon who did the fall surgery (Dr. Donohue). In addition, one of the nurses carefully went over the consent document for the surgery itself...lots of information to take in. Good thing I'd stopped on the way to the appointment at the hospital Starbucks for a caramel machiatto!
Following all of the appointments we headed out and found a lovely little restaurant for lunch, Lili's Bistro, fairly near the hospital. The service was very friendly...and apologetic after our waitress dumped a glass of iced tea in my lap! She offered us a free dessert for our inconvenience, and we happily took her up on that...yum!!!
After a suitable resting out period in the afternoon, we enjoyed another dinner provided by the Ronald McDonald House volunteers. This is the most time that any of us have spent actually at the house, even though Brian has stayed here on both of our other week-long stays. It is really a wonderful resource for families--and a nice facility as well! There are about 40 rooms, which is bigger than I initially thought it might be. Dinner is provided every evening by local volunteers, snacks are usually available, and there are lots of spaces for families to congregate and spend time. Adam and I wandered about and took a few photos so that you can get a sense of how it looks around here.
Here we are! Settling in to our "home away from home."
Up on the 2nd level deck overlooking the inner courtyard/play space. Adam posing with one of the guard owls...supposedly meant to scare away other birds, which were actually fairly plentiful. :-)
Another view looking over the courtyard.
Brian and Adam enjoying the lovely and mild evening.
Lots of play equipment...Adam decided he was a little too big to play!
A lovely little statue in the courtyard...lots of memorial moments around the place. It is evident that that the house has been a meaningful haven for many families through the years...and their memories of little loved ones are tucked here and there. It feels celebratory rather than sad...and special to be sharing this space where so many families have experienced such a range of emotions while their children were being tended in the medical facilities nearby. 
The halls are lined with fantastic photos of children being children! This is one of my favorite ones...Adam was willing to pose with this darling picture.
Lots of attention to detail...the game room has hand painted sports murals on the wall.
The main stairway down to the 1st floor entrance area. I love all of the natural wood!I hope that you enjoyed our little photo tour of the Fort Worth Ronald McDonald House...and can picture us in our temporary home. We'll continue our adventures tomorrow with an appointment with the surgeon, pre-op procedures and instructions, and an MRI.
Sunday, March 25, 2012
The saga continues...
We made it to Fort Worth! We're staying at the Ronald McDonald House (which is conveniently located just across the street from the hospital). Every evening, a local group sponsors a meal for everyone staying at the house, and tonight we got here just in time for tacos! A really nice end to a long afternoon of driving.
The next couple of days will be primarily appointments and testing...Monday we will actually be having a follow-up meeting for the fall epilepsy surgery with the neurologist and neurosurgeon. We don't know yet if anything else has been scheduled for Monday. Then on Tuesday, we will meet with the neurosurgeon (a different one) that will do the deep brain stimulation procedure. Adam will also have an MRI on Tuesday, and there may be some other pre-op procedural meetings...not sure yet. Then on to the the main event on Wednesday with the DBS surgery.
We're hoping to get out on the town a bit over the next couple of days while the schedule is a little lighter, so we'll see what we see! We just found out that there is a Legoland Discovery Center in Grapevine, so we may have to check that out. Or maybe we'll be feeling more cultured and will soak in some art at the Kimbell Art Museum. We'll see where our moods take us! Oh...and Dr. Monkey as well as his new side kick, Rockem Sockem Monkey are along for the ride, so hard telling what their vote will be! Maybe the Fort Worth Zoo?
The next couple of days will be primarily appointments and testing...Monday we will actually be having a follow-up meeting for the fall epilepsy surgery with the neurologist and neurosurgeon. We don't know yet if anything else has been scheduled for Monday. Then on Tuesday, we will meet with the neurosurgeon (a different one) that will do the deep brain stimulation procedure. Adam will also have an MRI on Tuesday, and there may be some other pre-op procedural meetings...not sure yet. Then on to the the main event on Wednesday with the DBS surgery.
We're hoping to get out on the town a bit over the next couple of days while the schedule is a little lighter, so we'll see what we see! We just found out that there is a Legoland Discovery Center in Grapevine, so we may have to check that out. Or maybe we'll be feeling more cultured and will soak in some art at the Kimbell Art Museum. We'll see where our moods take us! Oh...and Dr. Monkey as well as his new side kick, Rockem Sockem Monkey are along for the ride, so hard telling what their vote will be! Maybe the Fort Worth Zoo?
Thursday, March 22, 2012
Here we go...
What a difference a day makes...cliche, I know, but a fairly good phrase for our week! On Monday of this week (March 19), we headed back to Fort Worth for an appointment with Dr. Marks, the movement disorder specialist. He is the one we first met a year ago to talk about the possibility of deep brain stimulation (DBS) surgery to treat Adam's dystonia. Since epilepsy surgery must precede DBS, we spent the next several months going through testing and eventual surgery for epilepsy. Now, we were back with Dr. Marks, and we learned that he still strongly recommended DBS for Adam.
This was positive news! When we started talking about possible surgery dates, he first mentioned summer dates (July), but then he quickly switched gears to tell us about a cancellation that had occurred, opening up a date on March 28. I verified that I had understood correctly by asking if he meant next week, to which he initially appeared surprised, but then confirmed that was indeed what he meant. We all agreed to move forward with that date, assuming that all of the logistics could be worked out that quickly. I started doing the mental gymnastics of figuring out what we would need to tend to on the home front...I then felt a little queasy and overwhelmed...but eventually felt assured that we could make the necessary adjustments to our schedule, get a kennel date for Holly, etc.
So, the plan is that we will drive down to Fort Worth on Sunday, various pre-op appointments and tests will take place on Monday and Tuesday, and then surgery will take place on Wednesday. If all goes well, Adam will be released on Friday, we'll head home, and then return the following week for the initial programming session for the implanted device. If you want to learn a little more about DBS, you can check out the video that is linked from the hospital's webpage: https://www.cookchildrens.org/SpecialtyServices/Neurosciences/Services/Pages/Neurology.aspx Click on the video link for "Deep Brain Stimulation" and you can see some of the doctors that Adam is working with, as well as learn a little more about the procedure.
If you've been following us for awhile, you may be curious how things are going since the fall surgery. As of Monday, Adam had not had any seizures since leaving the hospital in November. Perhaps due to the long day in Fort Worth combined with all of the excitement of the upcoming surgery, Adam did have a seizure on Monday evening as we were en route home. This was a disappointing addition to our day, but we are still hopeful that it was an anomaly rather than a return to a regular pattern. We'll be following this to see what happens from here forward.
We'll keep you posted!
This was positive news! When we started talking about possible surgery dates, he first mentioned summer dates (July), but then he quickly switched gears to tell us about a cancellation that had occurred, opening up a date on March 28. I verified that I had understood correctly by asking if he meant next week, to which he initially appeared surprised, but then confirmed that was indeed what he meant. We all agreed to move forward with that date, assuming that all of the logistics could be worked out that quickly. I started doing the mental gymnastics of figuring out what we would need to tend to on the home front...I then felt a little queasy and overwhelmed...but eventually felt assured that we could make the necessary adjustments to our schedule, get a kennel date for Holly, etc.
So, the plan is that we will drive down to Fort Worth on Sunday, various pre-op appointments and tests will take place on Monday and Tuesday, and then surgery will take place on Wednesday. If all goes well, Adam will be released on Friday, we'll head home, and then return the following week for the initial programming session for the implanted device. If you want to learn a little more about DBS, you can check out the video that is linked from the hospital's webpage: https://www.cookchildrens.org/SpecialtyServices/Neurosciences/Services/Pages/Neurology.aspx Click on the video link for "Deep Brain Stimulation" and you can see some of the doctors that Adam is working with, as well as learn a little more about the procedure.
If you've been following us for awhile, you may be curious how things are going since the fall surgery. As of Monday, Adam had not had any seizures since leaving the hospital in November. Perhaps due to the long day in Fort Worth combined with all of the excitement of the upcoming surgery, Adam did have a seizure on Monday evening as we were en route home. This was a disappointing addition to our day, but we are still hopeful that it was an anomaly rather than a return to a regular pattern. We'll be following this to see what happens from here forward.
We'll keep you posted!
Subscribe to:
Posts (Atom)