Syringomyelia

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Syringomyelia

Postby mad254 » Sat Feb 26, 2011 6:00 pm

Can we have a discission topic for people with Syringomyelia alone without Chiari. Since both disorders give many different symptoms and treatments its frustrating to have to read through all the topics when they apply to Syringomyelia with Chiari Thank you very much
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Re: Syringomyelia

Postby tennesseewalker » Sat Feb 26, 2011 7:31 pm

Hi mad254,

What's the cause of your syrinx?

Mary
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Syringomyelia

Postby lady 59 » Sat Feb 26, 2011 8:31 pm

Hi mad254,
I have only a syrinx, I'll try to help you out with any questions you'd like answered. You can always pm. me.
Mary, lady59
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Re: Syringomyelia

Postby MichelleW » Sat Feb 26, 2011 11:24 pm

Me too...just an idiopathic syrinx here.

I'll help, if I can :)
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
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Re: Syringomyelia

Postby mad254 » Tue Mar 01, 2011 3:36 pm

Hi Girls,
Well as of now I have been told there is no reason I have the syrinx alone { no cause } although when I was 5 years old I was hit by a car. I think perhaps that has to do with that. I do not have Chiari or what I have been told anything else but the cyst. I think when you read through all these posts a majority of them are from Chiari. What we have is much more rare . When you have surgery for the Chiari you have a good chance that your syrinx will fully collapse. To my understanding when you have what we have nothing collapses it and shunting is the only thing thus far. Am I correct by stating this ? As far as I have read this is what I am getting from it.

We rarities must work harder and fight stronger to get the research $$ needed to help treat out condition. Its insane you can not find more neurologists who have more knowledge . Its insane that we must suffer for years before a doctor believes and diagnoses the real condition.

I would like to see if we can start to collecting more data on people with the idiopathic syringomyelia. Maybe I should rename this topic Idiopathic SM

Mad
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Re: Syringomyelia

Postby mad254 » Tue Mar 01, 2011 4:34 pm

P.S. Do you feel pain every day ?
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Re: Syringomyelia

Postby jfreema » Tue Mar 01, 2011 8:04 pm

Hi Mad,

I'm so sorry you're having trouble finding what you need. I had a Chiari malformation, but was told at first that my syrinx was idiopathic and since it had 2 wide places couldn't be shunted. Only through looking at my MRI myself did I learn otherwise; it was pretty clear it was a Chiari malformation, though I doubted myself because it wasn't in the report nor confirmed by a doctor initially. Because so many are diagnosed with idiopathic syringes before finding the cause, I worry about separating idiopathic from Chiari. Though it was frustrating (and I remember that feeling well while I was trying to understand), I wouldn't have found the info I needed had the posts not been together. I do think, though, that post-traumatic syringomyelia needs it's own area. That is clearly a separate cause, and one it sounds like you fit into. I wish you all the best and hope your pain is eased soon. My syrinx disappeared with surgery, but like you, I still have pain everyday due to the nerve damage it caused. I had my surgery at the NIH, where they've also done studies with post-traumatic syringomyelia, I think. Again, all the best to you.
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: Syringomyelia

Postby jfreema » Tue Mar 01, 2011 8:16 pm

Me, again- one of the NIH studies looks like it includes anyone with syringomyelia. Here is the URL. http://www.clinicaltrials.gov/ct2/show/NCT01150708?term=Syringomyelia&rank=3
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: Syringomyelia

Postby mad254 » Tue Mar 01, 2011 8:25 pm

Thanks Jen,

I think that is great advice to put post traumatic SM separate and perhaps it can over lap with some info on idiopathic anyway but titled as PTSM.

I have sent all my records to the NINH, because they are conducting a clinical trial right now. I am awaiting to here if I qualify. Is that where you went or was it the NIH ? I will look at your link too. Were you happy with the care you received form the NIH ? Sorry to here you are still in pain as well especially after surgery.

Thanks for the info

Madeline {my nickname is Mad }
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Re: Syringomyelia

Postby jfreema » Tue Mar 01, 2011 9:55 pm

My surgery was done by the division called NINDS of the NIH. I was very happy with my care there. Though I still have pain; overall I feel better than I did, so I'm glad I had it done. I hope you get accepted in your study and that you have good luck with it.
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: Syringomyelia

Postby karenb » Tue Mar 01, 2011 10:25 pm

Jen - thanks for posting the link, Jen. Last I checked, there were actually two studies that might be applicable to idiopathic Syringomyelia. The unfortunate part (for many of us) is that it appears that the studies are looking for surgical candidates and do not include non-surgical patients. Of course, only the study can determine if a person is eligible to be included or not.

Madeline - These studies are done by the NINSD (National Institute of Neurological and Stroke Disorders), under the auspices of the NIH (National Institutes of Heath). Is it possible you combined the two in your posting?

Karen
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Re: Syringomyelia

Postby mad254 » Wed Mar 02, 2011 6:29 am

Hi well I was wrong . I went back to see the address I sent my records too and its the same study as above . Thanks for clarifying. I was under the impression you can participate in the study and you have the ultimate decision in choosing the surgery?

I would think if it gets to the point of unbearable pain and no quality of life along with the chance of permanent spinal damage I would want to get the surgery done. However I wish there was a data base for neurosurgeons who are experienced in just SM. I would travel anywhere to get the right person to treat me.

I would not want to participate in this study if I would have to have a doctor who never operated on anyone and I was his/her 1st. I will have to call them .

Thanks ,

Madeline
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Re: Syringomyelia

Postby jfreema » Wed Mar 02, 2011 7:10 am

Hi again,

No worries about lack of experience. Dr. Heiss is one of the best and has been doing this for years and years. I know being in a study is freaky-seeming, but really, all they do is see to your care while compiling information. If they do anything extra that wouldn't normally be done, a board has determined it won't do any damage. When I was checking out Dr. Heiss, I found him to be conservative as far as recommending surgery, and if he feels he isn't the best to do surgery because of other medical conditions you may have, he'll refer to someone he thinks is more of an expert in that area. If you feel uncomfortable, he has a video on the asap site and is also all over pubmed if you look up syringomyelia heiss. Please don't be afraid of the NINDS studies. I got the best medical care I've ever received there.
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: Syringomyelia

Postby mad254 » Wed Mar 02, 2011 7:55 am

Hi Jennifer,
I am definitely not afraid of being in a clinical study. I plan on being in it if they choose me ,which I am pretty sure they will. I gave them all my MRI's and medical reports from 2006 to last month . They will already be able to see how much the cyst has grown. However surgery is another story.

I am glad to have met someone that has actually been in the study . Thank you for all your info ! Mad
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Re: Syringomyelia

Postby razzle » Wed Mar 02, 2011 7:59 am

SM can also occur as a complication of trauma, meningitis, tumor, arachnoiditis, or a tethered spinal cord. In these cases the syrinx forms in the section of the spinal cord damaged by these conditions. As more people are surviving spinal cord injuries, more cases of post-traumatic SM are being diagnosed as the syrinx can form years after the trauma.
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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