Medical Journey
Weee...it's a theme park, only it is NOT.
The neurologist that Matt saw on Friday had the best bedside manner of the three we have seen. He also suffers himself from an essential treamor and has a kiddo on siezure meds. So, he cares viscerally about the people that suffer from neurologial issues and he seemed about as frustrated as we are with the lack of modern medicine's knowledge of how our neurological system works. He also was at least kind enough to conduct the standard stupid neurology tests with as much humor as can be mustered for such a situation.
Our conversation was interesting. Matt appears to have a deminished blood vessel in his brain. This could be normal for him and no answer at all, or if it has been progressively deminishing it could be all or part of what he has been experiencing since December of 2010.
Treatment plan #1: 3 month trial of daily baby asperin. Since apparently that shit is magical. (science still doesn't really understand the mechanism of aspirin) The hope is: it decreases the 'stickiness' of Matt's blood enough for more of it to get through the really tiny (potentially important) vessel. If we are lucky (and at this point it will have to be luck) his 'woozy' episodes will end...this is such a longshot. But aspirin is pretty harmless so it falls into about the same category as the compression socks and salt pills we've tried.
Another part of the conversation revolved around the fact that it looks like the ring in his scull that the brain stem and spinal cord 'connect' through may not be big enough. Big enough for what you ask. Big enough to let normal amounts of spinal fluid move in and out of his skull. There are some 'brain tonsels' (I am not making this shit up) that hang down and as we age they can get a bit more 'dangly' and they might actually be to blame for that above mentioned deminished blood vessel. They are likely also to blame for causing a back up of spinal fluid in the brain that may be causing a central chamber for 'over flow' spinal fluid to over diolate. This too falls into the category of "could be normal for you, or could be the reason for all symptoms since 2010 including the initial fainting spells"
Treatment plan? Well this one is a bit harder. A few more educated folks need to see if they think the pictures of Matt's 'spine-brain-ring' are normal. If they think they are normal...then...we might need to try siezure meds. If they are not normal....then Matt may need skull surgery.
Dr. has ordered a very extensive lipids panel blood test for Matt too, which we need to get done soon. This seems to be more as a baseline should we be heading down a 'pharma' route.
No more EEGs though for a bit. First it's the blood test and the 3 months aspirin trial. If neither are effective and surgery will not likely help then Matt will do a 3 month trial of epilepsy drugs. We may try another 3 months with a different drug if the first is not effective before we do a very expensive and long 5 day - 7 day stay at the hospital under constant monitoring.
Also we need to talk to his cardiologist to see if it is possible to replace his current pacer with one that can withstand MRI. MRI is the best way available to docs today to get a picture of all the bits and pieces of Matt's neuro system. And he can't have one right now.
So we have our work cut out for us.
The neurologist that Matt saw on Friday had the best bedside manner of the three we have seen. He also suffers himself from an essential treamor and has a kiddo on siezure meds. So, he cares viscerally about the people that suffer from neurologial issues and he seemed about as frustrated as we are with the lack of modern medicine's knowledge of how our neurological system works. He also was at least kind enough to conduct the standard stupid neurology tests with as much humor as can be mustered for such a situation.
Our conversation was interesting. Matt appears to have a deminished blood vessel in his brain. This could be normal for him and no answer at all, or if it has been progressively deminishing it could be all or part of what he has been experiencing since December of 2010.
Treatment plan #1: 3 month trial of daily baby asperin. Since apparently that shit is magical. (science still doesn't really understand the mechanism of aspirin) The hope is: it decreases the 'stickiness' of Matt's blood enough for more of it to get through the really tiny (potentially important) vessel. If we are lucky (and at this point it will have to be luck) his 'woozy' episodes will end...this is such a longshot. But aspirin is pretty harmless so it falls into about the same category as the compression socks and salt pills we've tried.
Another part of the conversation revolved around the fact that it looks like the ring in his scull that the brain stem and spinal cord 'connect' through may not be big enough. Big enough for what you ask. Big enough to let normal amounts of spinal fluid move in and out of his skull. There are some 'brain tonsels' (I am not making this shit up) that hang down and as we age they can get a bit more 'dangly' and they might actually be to blame for that above mentioned deminished blood vessel. They are likely also to blame for causing a back up of spinal fluid in the brain that may be causing a central chamber for 'over flow' spinal fluid to over diolate. This too falls into the category of "could be normal for you, or could be the reason for all symptoms since 2010 including the initial fainting spells"
Treatment plan? Well this one is a bit harder. A few more educated folks need to see if they think the pictures of Matt's 'spine-brain-ring' are normal. If they think they are normal...then...we might need to try siezure meds. If they are not normal....then Matt may need skull surgery.
Dr. has ordered a very extensive lipids panel blood test for Matt too, which we need to get done soon. This seems to be more as a baseline should we be heading down a 'pharma' route.
No more EEGs though for a bit. First it's the blood test and the 3 months aspirin trial. If neither are effective and surgery will not likely help then Matt will do a 3 month trial of epilepsy drugs. We may try another 3 months with a different drug if the first is not effective before we do a very expensive and long 5 day - 7 day stay at the hospital under constant monitoring.
Also we need to talk to his cardiologist to see if it is possible to replace his current pacer with one that can withstand MRI. MRI is the best way available to docs today to get a picture of all the bits and pieces of Matt's neuro system. And he can't have one right now.
So we have our work cut out for us.