NS update

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NS update

Postby MichelleW » Thu Apr 15, 2010 10:02 pm

well, not much news.
Best news of the day is that he doesn't want to see me for a WHOLE YEAR. I won't have an MRI until sometime in 2011.

My syrinx has collapsed - going from 8.5mm round at the widest part to 3.1mm by less than 1mm wide now. He is very happy with this. What is left is very thin and he said he couldn't ask for a better collapse.

The bad news is that the rest of the problems I am experiencing aren't things that he is willing to link to SM. He said the headaches are not related, and are likely tension headaches. The trigeminal neuragia can be treated with medication he said, but he also said it isn't related to my SM. He says (and showed me) that he can totally rule out chiari - there is no tonsillar descention whatsoever, and no crowding of the brain impeding the flow. He is not a believer in Chiari zero - and had some real harsh things to say about NS's who diagnose it and treat it.

I don't know what to think, but what I do know is that I need to start focusing on feeling better and being healthier. I need to destress and relax and try to enjoy each day.

I guess I have a year to start on that path before another MRI.

That's my update - I'm off to bed!
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: NS update

Postby Eden** » Sun Apr 18, 2010 11:15 am

Wow...thats awesome news Michelle YAY!!!
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
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Re: NS update

Postby MichelleW » Thu Sep 30, 2010 1:39 pm

SO much for that.
Had an MRI yesterday because of some increases in pain and neurological symptoms.

Waiting to see what the results are, but I'm feeling pretty defeated right now.
If the shunt has failed, it means another major surgery and the realization that this disease will continue to take me down year after year.
If it hasn't failed, it means that I have to live my life with this pain and the neurological deficits will keep coming.

I feel beaten and deflated, no matter what the outcome.

:(
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: NS update

Postby mad254 » Mon Mar 28, 2011 8:12 pm

Hi Michelle,

First I want to say I am so sorry you are suffering so much. I am curious about all these different doctors telling all of us with these related conditions what they believe in and what they don't believe in. This is outrageous to me. Cant someone give out accurate information already !

Hopefully ASAP will be able to do this so it will be directed at all these doctors so they all can speak the same language.
I was told my idiopathic syrinx was causing me none of my symptoms and was diagnosed with a dozen different reason of what i had. I just went to a new NS last Friday and he said they are researching and testing for Chiari 0 . Supposedly it cant be seen on the regular MRI only by testing from the CINE MRI { where they measure the pressure of the spinal fluid in the brain } and a special eye exam from a nuero- ophthalmologist that measures the pressure in your eyes too.

My other neurologist didn't believe in tethered cord or chiari 0 . Who are we suppose to believe?

Have you ever gotten the CINE MRI? Maybe you can ask for that? Maybe you even need to find another doctor ? Maybe calling ASAP and speaking to someone at the office level about whether they believe in Chiari 0 or asking the NIH .

Praying that your pain will get better!!

Madeline
mad254
 
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Re: NS update

Postby mad254 » Mon Mar 28, 2011 8:22 pm

I just looked further on the ASAP website and it does state Chiari 0 so I would question this NS you are seeing. Maybe show him this information . Get a brochure form ASAP to show him? Good Luck
mad254
 
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Joined: Sat Feb 26, 2011 5:49 pm


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