Hopefully you can advise me!

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Hopefully you can advise me!

Postby sarahb » Sat Mar 29, 2008 9:06 pm

Hi there

I live in NZ and there is only one NS who has any experience with SM here. I have been looking at the videos from the Chiari Institute and have some questions and I am hoping that some of you may be able to help.

I have SM which is probably caused by two thoracic disc herniations (old) and or a old compressed fracture at T4, which have damaged my spinal cord (apparently permanently). All of the information I have found states that to treat SM, first of all they try and correct what has caused it. Apparently my TDH and resulting cord damage cannot be treated and they are monitoring the syrinx for growth etc. My neurological symptoms seem to be progressing. Is the only thing that may help me in the future a shunt procedure?? And has anyone had this successfully??

I was going to email the Chiari Institute but can't find an email address. Any advise would be appreciated - feeling a bit isolated in terms of who can offer me advise and a second opinion.

Cheers
Sarah
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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sarahb
 
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Location: New Zealand

Postby bri23t » Sat Mar 29, 2008 9:14 pm

r u looking to tci for an appt or just to ask questions?...there is a phone number i dont know if ur able to call from nz...b/c i know that when u call they email u paperwork that u submit to them for review...if u need the number its on the tci website or i think i might have it somewhere...if u want it please PM me and ill get it for u...hope that u find success in ur quest for answers with minimal pain and slow progression of ur symptoms...
dx CM and SM 09/05, failed PFD 10/05
VP shunt 11/05
removal of cerebral tonsils 1/07
SM (through entire spinal cord)
TCS and EDS dx at TCI 4/08
TCS surgery 4/08, pfd revision and VP shunt revision 5/08
bri23t
 
Posts: 173
Joined: Sat Feb 09, 2008 1:26 am
Location: TRINITY, FL

Postby sarahb » Sat Mar 29, 2008 9:27 pm

Hi Bri

Thanks for that, I have found a phone number and will figure out the time difference and give them a call during the week - it is Sunday later afternoon here at the moment.

I am learning alot - eg, yesterday I had a good day and only took my medication required at night and today I have suffered big time. I am only really starting to walk around now and only for a few minutes at a time. Also - if I take the maximum medication in one day - my bladder etc is good the following day but then it all turns to custard again the following day.

I guess my fear is - if they can't fix the cause, and my syrinx is going from T2-T12, how much further can it go and what is my long term prognosis. I know that everyone is different, but I can't help but wonder if the surgery to remove the calcified herniations should be attempted, to remove the compression on my spinal cord.

Also, I am really noticing memory issues and it is getting embarrassing. The worse thing is that I will be in the middle of something and its like someone turns my brain off then back on again - if I am talking to someone I completely forget what I was talking about, and the other day I was driving and suddenly realised I was about to hit a parked car. Is this part of SM?

Left side seems to be getting weaker by the day but in saying that - I have good days, and then I have the other extreme of really bad days! It really gets me down sometimes. Pain is becoming more of an issue, but it seems to travel around. Eg, one day it is in the lumbar area, next day in the thoracic area. I am beginning to think my mind is puposefully playing tricks on me.
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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sarahb
 
Posts: 196
Joined: Fri Feb 22, 2008 7:35 pm
Location: New Zealand

Postby bri23t » Sat Mar 29, 2008 9:43 pm

hey sarah...so it is 1040 pm sat night eastern time right now which is what time it is at tci...

r u also a fellow cm sufferer or is ur primary diagnosis sm?...b/c some of the symptoms ur talking about remind me of me and what i have come to understand as cm symptoms...

also in response to ur question about how far the syrix will go...mine runs from c1 down to s1...whole length of my spinal cord...wider in some parts more than others...

i have also found that on days where i try to take less of my meds b/c im feeling ok, that day is usually followed by a bad day where i max out my meds feeling like crap...i try to keep it balanced every day to off set those worse days...

my advice to u about ur urine is on days that ur taking the max increase ur water intake that day too...that should help ur kidneys...

and dont even get me started on memory...wait what were we talking about??!!:)
i honestly cant offer any advise on the memory situation b/c i have yet to find anything that helps mine...so if u find anything that helps u pass along the info:)...

i too have significant deficit on my left side...my left leg is paraylzed from the knee down...it sucks and pain has just become a constant in my life...

and the pain that moves from lumbar to thorasic is not ur brain playing tricks on u...its that damned syrix playing tricks on u...

how did we all get to be the lucky ones:)...hope that u have a nice night...good luck w/ tci:)
dx CM and SM 09/05, failed PFD 10/05
VP shunt 11/05
removal of cerebral tonsils 1/07
SM (through entire spinal cord)
TCS and EDS dx at TCI 4/08
TCS surgery 4/08, pfd revision and VP shunt revision 5/08
bri23t
 
Posts: 173
Joined: Sat Feb 09, 2008 1:26 am
Location: TRINITY, FL

Hello

Postby preciousheide » Sun Mar 30, 2008 5:55 pm

Just wanted to pop in and say. I too am having memory issues and it has to be associated with my SM, I know its not an age thing (I'm only 25)

I too think it is highly embarrasing to have your brain shut off. I have been having trouble remembering names sometimes. (It will take me 5 minutes to remember a name that I should know)

I just recently contacted TCI myself to see about getting an appointment. I live in Alaska, and in a small town, and I havent found anyone who "Really knows" about SM. I fell at work, and I believe that is the cause of mine, but my family doctor says she thinks I was born with it (doesn't make much sense to me) anyway, I hope that TCI can do something for the both of us. ( I like to try and believe that there is a way to help all of us)

Anyway, I just hope that you can get some help. I am fairly new to this game and havent even seen a NS (that deals with this yet), but any help I can offer, I will.

Good luck to you!

Heide
preciousheide
 
Posts: 42
Joined: Tue Mar 18, 2008 8:40 pm
Location: Soldotna, Alaska

Postby sarahb » Sun Mar 30, 2008 7:20 pm

Thanks for that info hipcrip. I have just sent them an email so fingers crossed they come back to me.

I have been doing so much reading on this condition - but it still doesn't take that fear away does it!

Thankyou to everyone who has taken the time to answer - it is so nice to know that you are all just a quick message away.

Take care everyone
Sarah
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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sarahb
 
Posts: 196
Joined: Fri Feb 22, 2008 7:35 pm
Location: New Zealand


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