Syringomyelia

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Syringomyelia

Postby Thirupathi » Mon Apr 02, 2012 12:47 pm

I was affected by Syringomyelia, post Tuberculosis diagnosis....could someone help me understand...whether it is Hereditary ..meaning will it pass on to children
P.S : I am a male yet to get married...
Thirupathi
 
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Re: Syringomyelia

Postby karenb » Mon Apr 02, 2012 10:44 pm

Dear Thirupathi,

The form of Syringomyelia you have is the type I first heard of when I was diagnosed. You mentioned that it was post-Tuberculosis, which is a type not seen much here in the U.S. An aquaintance of mine at the local university has something similar, and we've discussed our common (but uncommon) condition a number of times.

Can you tell us more about your syrinx? Meaning where is it and how wide is it? For example, my syrinx is from T6-T9, 3mm at its widest. Also, do you know if you have a Chiari malformation? (That's the most common cause, and it's the cause for which the most genetic research has been done.)

Also, the late Dr. Marcy Speer was the pioneering researcher into the genetics of Syringomyelia and Chiari Malformation - you might want to research some of her studies and findings.

Best wishes, and we look forward to hearing back from you soon.

Karen
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Re: Syringomyelia

Postby Thirupathi » Tue Apr 03, 2012 3:34 am

Thanks Karen for your response...

This is what my medical report says...
Final diagnosis: Post tubercular arachanoiditis Syringomyelia

Treatment: D6, D7 laminectomy and syringo subarachanoid shunt was done..

However i don't see an iota relief from surgery, rather things worsened gradually...just can walk with support....and condition seems to stable.

Could you please let me know any surgical specialists in US of A who has treated such ailment or is an expert in such diseases..

Though my economic status is not so well off to come down to US, nevertheless ..if there is a Doctor who can treat it ..i will approach some charity trusts to get help...

Thanks Again for your response ..wish some break through happens in this field and some cure may be found in future...
P.S : None of my ancestors had this issue(Syringomyelia-Hereditary issue) as far as i know
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Re: Syringomyelia

Postby Thirupathi » Tue Apr 03, 2012 3:41 am

Dear Karen,

I dont have any issue with Brain....my problem is totally related to Spinal Cord only...however ...

May be some indirect relation to Tuberculosis Meningitis which i was affected by ...in 1999 and Syringomyelia was detected in the year 2005 (probably might be pre-existing, but i started losing sensation of the right leg in the early 2005(Probably around April), that is when i approached a doctor and was told that i have this deadly disease....)
Thirupathi
 
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Re: Syringomyelia

Postby Thirupathi » Tue Apr 03, 2012 3:52 am

No where in my medical reports ...it is mentioned about CHAIRI Mal formation.....

I have been undergoing MRI scan every year to ascertain the condition of SYRINX....whether it is expanding or As-Is.....

Reorts says ....the condition is stable .....

I had approached three well known doctors in Hyderabad, (Capital city of AndhraPradesh State in India, Hope you might heard about the city)...for opinions ....one said(the one who performed surgery ...nothing more can be done .. i have to live with it....) the other two said another surgery may improve the condition but they were not sure....just a hope....

However ...since my condition has worsened post first surgery ...i am doubly skeptical of another surgery......
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Re: Syringomyelia

Postby Thirupathi » Tue Apr 03, 2012 3:55 am

I have all the scanned copies of MRI & Discharge summary(Post surgery)...need be i can send across if you want to have a glance at them...
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Re: Syringomyelia

Postby razzle » Tue Apr 03, 2012 9:49 am

where do you live as there are many sm/cm drs all over the US
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: Syringomyelia

Postby Thirupathi » Wed Apr 04, 2012 9:31 am

India..
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Re: Syringomyelia

Postby razzle » Wed Apr 04, 2012 9:36 am

oh sorry cant help you there unless you come to the US
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Syringomyelia

Postby razzle » Wed Apr 04, 2012 9:37 am

http://indiahealthtour.com/treatments/n ... rgery.html

there is a email at the bottom maybe they can help yu
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Syringomyelia

Postby razzle » Wed Apr 04, 2012 9:40 am

I did a google and came up with this name in India , a neurosurgeon

manas pranigrahi he is neuro surgeon
Once you choose hope, anything's possible.

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Iowa
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Re: Syringomyelia

Postby Thirupathi » Wed Apr 04, 2012 1:16 pm

Thanks Razzle.....Manas Panigrahi is the one who operated me.....:)-
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Re: Syringomyelia

Postby karenb » Fri Apr 06, 2012 11:04 am

Hi Thirupathi,

I went to the NINDS (National Institute of Neurological Disorders and Stroke), and managed to find an article about post-tubercular arachnoiditis.

The link to the abstract is http://www.expert-reviews.com/doi/abs/10.1586/eri.11.93?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed. I hope this article can at least point you toward some useful information and contacts.

Due to vaccinations and screening for tuberculosis, post-tubercular arachnoiditis/syringomyelia is very rare in this country, so those of us here on the board are not very familiar with it.

Best wishes, and please keep us posted on what you find out.

Karen
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Re: Syringomyelia

Postby Thirupathi » Sat Apr 07, 2012 8:02 am

Thanks Karen.
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Re: Syringomyelia

Postby Thirupathi » Sat Apr 07, 2012 8:58 am

Hi Karen,

What i understood is there is no definite cure for Syringomyelia...caused due to TB Meningitis, as expected. Unfortunately ..i was not vaccinated in my child hood for TB, had i had vaccinated..things would not have gone bad....any ways..thank you very much for your reciprocation....hope Indian government make it compulsory to undergo TB vaccination to avert such ailments....

I believe whether Syrinx is caused due to TB or Chairi malformation have similar repercussions , however the form of cure( In case if there is some breakthrough in future) might differ..as far as i know...USA has concurred TB and i don't think any research would be done in that area......and USA would only be concentrating on CHAIRI related cases..and i don't think Lazy Indian government would ever think in that area at all..............

Lets hope some miracle happens and till then i should keep going...in case if you come across any definite cure or any research findings in future which would help improve Syringomyeliacs ..please keep me posted..


May i request your contact...facebook or email(Gmail), so that we can share/discuss if there is any breakthrough in future...

Thank you very much Karen.

Regards,
Thirupathi.
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