hello everyone,

i've been away for a while...my family has just moved from miami to lakeland florida so we've been busy.

it has been two years since my first surgery and a year and a half since my second and i have not had a rest. in april my foot was paralyzed for two weeks and then came back quite suddenly, it also happened a few weeks ago. but ever since the surgery i'll have these "spells" that completely disable me. i go numb on one side, i have doulble vision, my words are slurred, and some of my cognitive function goes. it just doesn't make sense, it's like i never even had the surgeries ! also, i saw that there was a post on it, but i can't sleep, i have trouble falling asleep and staying asleep...drives me nuts!

am i the only one going through all of this ? the doctors have no clue why any of this is happening...help!

frustatedly,
jesenia

I am so sorry to hear you are still having difficulties after surgery. I had surgery in 1989 an 1990 and I will share with you the fact that I still have occassional "numbness". But, the numbness is not exactly like it was before surgery. Now, it is not as strong and usually doesn't last as long. I have spoken to a couple others who have had the surgeries over 10 years ago and they all still have some symptoms. But, if your symptoms are the same as or worse than the ones you were having BEFORE surgery, I do not think that is the optimal outcome of surgery. I would talk to my neurologist and ask him to do an MRA/MRI to see what is going on in there. It is possible that your surgeries ddid not "take". You may need to try again. Of course, I am NOT A DOCTOR. I just wanted you to know that in my opinion, it is fairly normal to still have some syptoms post-op, but they should at least be better than they were... GOOD LUCK!! I hope you can start feeling like your old self again soon!!

Sara

Hi...
...Im not sure about your problems either....yours an example that everyone is different....but like we said we have no "history record" yet.  One thing I'm wondering though is with my Cara...who still has TIA's but (knock on wood) hasn't in over a week....but Im wondering....since she wasn't 100% occuluded on the left side....while the bypass plus graft placement was done...I got the feeling there are certain areas that are only affected by MM and that eventually will be 100% occuluded (I may be wrong though)...but we will have already had new arteries (bypass route) and growth from the muscle graft by the time it happens....so when I heard that I was thinking maybe every little TIA cara has had was either the tiniest of the tiny artery shutting down or a new artery opening up somewhere in her head that the brain has to relearn or adapt the additional blood supply or lost...Cara's first surgery was over a year ago...the second is almost a year ago. 

While she continues to have these tiny spells...which she never had prior to surgery...she's growing and moving ahead rather than falling behind like she was prior to surgery.   She does have an appt with her local pediatric neurologist who wants to see her before assigning MRI and MRA...etc.  Her neurosurgeon in Rochester wants to see them to compare to her pre-surgery films.

Her 'spells' does what you just described happened to her (not sure about double vision but very possible) nor numbness but very possible by the way she avoids certain things...and all ok by 2 to 3 minutes.  Definitely affects her speech (slurs then cannot talk for 10 to 15 seconds)..then slowly mouths words only (she talks that way to me anyway as I as a deaf person lipread better sometimes when people don't use their voice as they enunduate the words so much more).

But I agree with the others you should contact a MM specialist...and if you haven't had a follow up...you should.   Im planning to do an annual check up for Cara anyway to be on the safe side especially since we are still learning from this MM, developing its history of cases..so far from what I see...we are all so different so there may not be any set predictions for a long time.

Til then we'll hang together .... and we'll make it.

CarasMOM

   


Shirley      Hi, my name is Shirley, my daughter Jeanette [37] had surgery on one side just about a year ago. She has alot of difficullty sleeping also and has the numness on her left side. I know it drives her nuts not being able to sleep and like you they don't know why. Just wanted you to know your not alone.
    Also welcome to the area my husband and I live in Zephyrhills and after Miame Lakeland must be small.
   Jeanette lives in the state of New York. If we learn anything will let you know.    Shirley