Hippocampus Sclerosis
Colleen, my stepdaugher underwent several tests...the results came back as that...the neurologist also refered to it as thinning of the brain....she recommended surgery. I guess I want to know how involved the surgery is. Collie had menegitis as a baby (6 months old)..she lost her hearing in her right ear as a result.. the doctor assumes that this problem is a result of the same issue. Collie started suffering from seizures at 13..she is now 19...she has had 4 grand mals and suffers from minis at least once a week....she is on 1500 mg of Triliptal a day... Any one with any more information on this, Id really appreciate some feedback. Brian and I have had enough for one year. |
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| I'm really sorry Darcy.. thats not a good thing to have to live through.. Back in England menengitis is a big issue with kids getting manadory vaccinations n such.. over there they all sorts of helplines and information..
One of the things they gave us were all these phamplets after our kids got vacinated.. i went and dug one out( i horde everythign that has to do with our kids =/ )..anyway, I found a web address on it and there is a downloadable one there.. dont know how much good it will do.. but it might be a good place to start perhaps.. http://www.meningitis-trust.org/disease ... ngitis.pdf hang in there though.. *huggers* |
| I have no information but I wanted to say I am sorry to you, Colleen and Brian. That is sad. I will keep you all in my prayers. |
SheepieMommy wrote: I have no information but I wanted to say I am sorry to you, Colleen and Brian. That is sad. I will keep you all in my prayers.
Me too. |
Darcy, I'm so sorry you, Brian and Colleen have to go through this. I've never heard of the affliction but will keep you all in my prayers. Please keep us informed as you learn more.
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I share the same thoughts as the others. I will keep ALL of you in my prayers. I hope you learn some positive information about it, and Colleen can find something that helps her out. If it's surgery, I pray it goes well. Please let us know. I've never heard of that before, but it sounds so scary 
*big hug* |
| I'm really sorry to hear this Darcy. I've never heard of this affliction either, but it certainly sounds frightening. You have my prayers and support.
xo |
| http://www.emedicine.com/radio/topic443.htm
http://jnnp.bmj.com/cgi/content/full/69/6/716 http://www.ninds.nih.gov/disorders/epil ... ilepsy.htm Darcy, as a medical librarian I took the liberty of researching hippocampal sclerosis and there isn't much written for the patient. The third link (which is on epilepsy in general) mentions the hippocampal connection about two thirds down the page. The other 2 links are to professional papers which give a decent overview, although they are technical. I think this is going to be considered a "rare disease" meaning that not many people have it and there isn't much published. Don't be afraid to pester Colleen's physician and don't hesitate to get a second, if not more, opinions. Go to the university medical center and talk to a neurologist. Brain surgery is not something to be taken lightly (that's my opinion) so I would do as much research and find out as much as possible. |
| Darcy,
I am sorry to hear of Colleen's condition. Prayers are with you, Brian and Colleen! |
| Poor Colleen! That sounds serious. I agree with Paula that more needs to be asked of the doctors. Amazing how you can meet a person and only see the positive, never suspecting that they have this scary issue to deal with. What a brave young woman! I hope you find the answers you need. |
| I'm so sorry!!! Hugs for you all!!! I wish I knew something intelligent to say to you, but it's way out of my field and I've never heard of it. |
| Hi Darcy,
Sending my thoughts and prayers to you all as well. I wish I could offer advise but I know little about this affliction.
Marianne |
| Thanks all...colleen is doing surprisingly well, its actually brian that im worried about....she was over last night and said..so be it ..if i need surgery then okay...i just dont want them to screw up my hair up...lol...thats a 19 yr old! |
| Yup, that is a teenager for ya!!!
I can tell you that brain surgery has made amazing strides in the last 10 years, procedures that were once a HUGE deal are being done routinely with amazing success. Perhaps this will be the opportunity to do something definative about her seizures, wouldn't that be a wonderful thing?! |
| I think so and so does Colleen...she hates taking her meds..and she routinely forgets to reorder them...i would LOVE to not A. remind her to reorder...or B. do the reordering for her..... |
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