Question about syrinx size and symptoms

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Re: Question about syrinx size and symptoms

Postby JeffinMI77 » Thu Jan 05, 2012 1:04 am

I didn't see the Q&A, i'll look it up now! but yes very interesting. I wish I could see the DR doing the lecture.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Question about syrinx size and symptoms

Postby Jankster253 » Thu Jan 05, 2012 2:57 am

Me too. I saw there is a conference in April in Seattle, I'm thinking about maybe going. It can't hurt! (No pun intended..........lol) :lol:
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
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Re: Question about syrinx size and symptoms

Postby BstKy » Fri Jan 06, 2012 2:50 am

Teresa and Jeff,
I know exactly where you are coming from. I was diagnosed in April 2011 w/ a syrinx from C4-T7 @ 3 mm's at the beginning expanding to about 6 mm's at C6-C7 and T1-T2 going back down to 3-4 mm's to T7. I have had a CINE MRI, left shoulder MRI, cervical / thoracic MRI, cervical myelogram and according to 2 Neuros do NOT have Chiari. That's fine, but everyone that I have seen tell me that the large syrinx that I have is not causing my symptoms, but rather disc disease in C4 and C7 is responsible. However, in addition to the pain and numbness/ tingling in my left and right hands and arms, I have had very strange symptoms since February 2011 when this all started. I have had an EMG and it shows moderate impingement at C6-C7 but yet all of my myelograms and MRI's don't really show a problem based on those studies. I have bad sweating on the back of head, neck, and armpits, which I have never had in 42 years, feelings of anxiousness, panic, aggravation, now, which I have always been an easy going / outgoing person. My job requires me to be very vocal and present in several meetings, but with these new symptoms my voice gets weak and cracks, etc..... a feeling of fear when getting ready to speak, etc.... it's crazy..I was never like this. But, according to the Neuro's my syrinx has nothing to do w/ all of this stuff. :)

Thankfully I have health insurance through my employer and I really put it to use in 2011, with the way things are going, I don't know how much longer I will be able to continue going to work and try to concentrate on business w/ all of this other on my mind, I have seen 2 Neurosurgeons, one in Lex KY and the one I am currently seeing @ the Mayfield Chiari Center in Cincinnati. I have also seen my orthopedic surgeon in Lex KY that did two prior lumbar fusions in 2002 and 2007 and he will not treat me due to the syrinx and it not being in his field. However, he does fully believe that I have issues w/ my discs AND he feels the syrinx is causing the other unexplainable symptoms, but he's not a neuro so he does not deal w/ anything inside the cord????

So, with that being said, I know Neurotin causes weight gain, but if it weren't for it, I would be a complete recluse. 1500 mgs of Gaba and 60 mgs of prozac per day seem to keep a lot fo the sweating/ anxiety and tremors down to an amount that I feel comfortable being in public. (not presenting in meetings though) I only take 7.5 mg lortab during the day for pain but hate the way it causes me to be a little zoned out for things.

I really would like to get another opinion from a neurosurgeon that believes that ANY syrinx no matter the size can and will cause very strange symptoms and would not be opposed to going in and draining it.... I think the plan will be possible fusion of C4-C7 first to see if that takes care of my symptoms according to my current neuro, but if they are actually going in, why not drain that blob of liquid taking up space in my crowded spinal cord?

I wish everyone the best and look forward to keeping in touch...

Brian
Diagnosed w/ SM no Chiari 4/2011
Syrinx C4-T7 6mm
chronic shoulder and neck pain, numbness in both arms / hands
chronic low back / hip pain
Lumbar Fusion L-3/ L4 -2002
Lumbar Fusion L-4 / L5 - 2007
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Re: Question about syrinx size and symptoms

Postby JeffinMI77 » Sat Jan 07, 2012 4:19 am

Brian,

Follow the links to the videos earlier on in this conversation. It's footage from a conference. One of the Dr's belives that the size of the syrinx doesn't matter. Seems that we all face the same issue there. I have two that are considered "tiny" but i'm having all sorts of strange symptoms. The NL said my bulging discs aren't even causing an issue. I won't deny that I propably have arthritis or something but this has to be cause alot of my issue. He just wants me to do PT. I'm getting a second opinion. The only thing I take is Norco. It's the lowest dose in the Hydrocondone/acetaminaphin (spelling?) family. It's starting to not work. At the end of my shift I can barely stand.

Funny that you mentioned the sweating in the armpits, over the last year or so i've been sweating under the arms really bad and i've never had that problem.....

My PCP is more understanding because his father-in-law had one but the NL I seen said we would just monitor it. I'm very curious to know at what point do you avoid things that can cause it to grow or continue with business as usual. He told me that I wasn't there because of the syrinx, I was there because of the pain....Um no, if it was just pain I would have had my dr give my a stronger pill. I should have told him, well if there's nothing neurological going on and you are not worried about the syrinx then there's really no reason for me to come back and see you in six weeks.

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Location: Wyandotte, MI

Re: Question about syrinx size and symptoms

Postby karenb » Sun Jan 08, 2012 12:21 am

Hi all,

Some helpful info from other folks is contained in the post "TIPS FOR LIVING WITH SM/CM" (http://www.asap.org/forum/viewtopic.php?f=3&t=8060).

Karen
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Re: Question about syrinx size and symptoms

Postby lovingwife » Sat Jun 23, 2012 11:23 am

We have records off to Ellenbogen now (sm, no cm). Can you please share how your appointment on the 23rd of January went? I'm praying for some answers for my husband and hoping Ellenbogen can help.
Thank you,
Heidi
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Re: Question about syrinx size and symptoms

Postby alpowers01 » Mon Aug 13, 2012 3:16 pm

While large syrinxes are often accomapanied by severe symptoms, small ones may be, too. Any doctor who uses a small syrinx dimension to put you off is probably not terribly knowledgeable. This seems like an obvious clue that it's time to see someone else.
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Re: Question about syrinx size and symptoms

Postby alpowers01 » Mon Aug 13, 2012 3:28 pm

To the question, "Why not go in and drain...", I am compelled to respond as follows: Do not do any surgery until you know the cause of the problem!!!!! For example, if there is no cisterna magnum at the base of the skull, its absence may be the cause of the hindbrain herniation AND the syrinx. In this case, a corrective procedure needs to be done to encourage the formation of one, e.g., posterior fossa decompression and duraplasty.

"Draining" can be fraut with problems and is likely to address only symptoms. Please find a physician who is well-informed and able to move forward with a careful look for cause and then have it addressed by a surgeon who knows what he/she is doing!
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