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| A question about Rasmussen's Syndrome. http://www.ferrousmoon.com:80/forums/viewtopic.php?f=55&t=1443 |
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| Author: | Gwanky [Mon Aug 04, 2008 6:14 pm ] |
| Post subject: | A question about Rasmussen's Syndrome. |
Recently, my cousin was diagnosed with Rasmussen's syndrome. It appears she will have to undergo a Hemispherectomy. I was wondering if anyone here knew anyone that had undergone this procedure, and how it affected them afterwards. I've been told that bare minimum there is going to be mild retardation (highly functioning mentally retarded) ranging to paralysis and severe retardation. I can't seem to find much information on the internet as Rasmussen's syndrome is extremely rare. Does anyone have any experience with this disease and have a story to share? I know I've made many less than serious topics, but please if you don't have something serious to say don't post here. I've posted a similar message on multiple boards, as there is minimal information on the internet. |
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| Author: | Burningmace [Tue Aug 05, 2008 5:30 am ] |
| Post subject: | Re: A question about Rasmussen's Syndrome. |
My next door neighbour underwent similar surgery for a different condition when she was in her early 40's. She had seizures, massive mood swings (she'd go from hyperventilatingly ecstatic to suicidal in 30 seconds) and massively reduced motor control due to a disease that caused malformed brain tissue to be created. It was the same operation in principle to that of your cousin's - to disconnect and/or remove certain parts of the brain. She had around 20% of her physical brain matter removed, and it solved the problem. The negative result of the surgery is that she has the odd memory lapse, some mild muscular twitching, struggles to remember people's names and faces, slightly reduced mental agility and has anosmia (no sense of smell). Despite this, she is a more than capable driver (the DVLA made her take her test again and she passed first time) and she works a full time job in an office. However, this is not to say that your cousin's operation will result in a similar way. From what I've read, the areas of the brain most commonly affected in Rasmussen's syndrome are much more integral to the functionality of the brain than in my neighbour's condition. As with all neural surgery, especially concerning the brain, there is never a 100% recovery and there will be some side effects. I think it all depends on what parts are disconnected/removed. One thing that may help predict the level of mental retardation after the operation is to know how she acts as a person and which hemisphere they will be operating on. If she is interested in (or more stimulated by) art, music and language, her left hemisphere is likely to be more active than the left. If she is more stimulated by logic, maths and technology, she is probably has an active right hemisphere. If the surgeon is operating on the active hemisphere, the damage will most probably be more significant than if they are operating on the less active hemisphere. Despite my comments here, I am NOT a medical professional and I am definitely not an expert in Rasmussen's Syndrome. If a doctor tells you something different, take his/her word over mine. Hope she gets well soon. |
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| Author: | Gwanky [Tue Aug 05, 2008 8:35 am ] |
| Post subject: | Re: A question about Rasmussen's Syndrome. |
Thanks, glad to hear it is possible to at least be a functioning individual after the surgery. My dad is in the medical business and he's trying to see if theres any experimental trials she can get into, anyways according to the doctor there will be mental impairment however until the operation is performed there is no way to tell how sever, he said she'll hopefully be able to speak, read, walk and run with a slight limp, work a job, and live on her own providing someone manages things like taxes and finances for her as an average scenario, best case is a little better with her being able to function wholly on her own and worse case is her needing to live at a home and be cared for, be significantly retarded, paralyzed, and unable to speak. Why does a disease like this exist I mean it's a fucking disease that only affects children under the age of ten. A fucking degenerative brain disease that affects children under the age of ten. Thats not right, thats not fair, I mean it seems Godless, thats the only way I can describe it. |
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| Author: | Burningmace [Tue Aug 05, 2008 11:49 am ] |
| Post subject: | Re: A question about Rasmussen's Syndrome. |
Diseases like this are not really something anyone has control over. I know it sucks, but all you can do is hope she gets through the operation with no severe side effects. |
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| Author: | Gwanky [Tue Aug 05, 2008 11:50 am ] |
| Post subject: | Re: A question about Rasmussen's Syndrome. |
Agreed. |
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