Welcome to the Transverse Myelitis and Atraumatic SCI forum

[Wise Young]

This forum is for people and families with transverse myelitis and atraumatic spinal cord injury. Spinal cord injury results from many causes besides trauma. For example, spinal cord injury can occur from loss of blood flow (ischemia), arteriovenous malformations (AVM), infections (viral or bacterial, tuberculosis), arachnoiditis (inflammation of the meningeal lines of the spinal cord), tumors (both intrinsic and extrinsic to the spinal cord), autoimmune diseases (multiple sclerosis and lupus erythemasus), spinal stenosis (narrowing of the spinal canal), developmental disorders (cerebral palsy, spina bifida), scoliosis (curvature of the spine), surgical complications, osteoarthritis (spondylosis), disc herniation and other causes of spinal cord compression, amyotrophic lateral sclerosis, muscular dystrophy, and and many other causes.

While the consequences and care of spinal cord injury in these cases may be similar, the causes vary. This forum is for people to discuss issues related to atraumatic spinal cord injury. Many people have requested such a forum. To initiate the forum, we will be moving some topics relating to transverse myelitis and atraumatic SCI from the Care and Cure forum here in order to provide a base for the forum.

Thank you.

Wise.

[Sue Pendleton]

Thanks Wise for this great forum just for us non-traumatic types. "We", of course, were all traumatized by what caused our events though. Just in a different way. Most of us don't have cool sotries to tell about driving into bridges, being hit by a speeding linebacker, being mowed down by the very uncool serial drunk driver while walking home from school or, my personal favorite, falling off a boyfriend's shoulders after too much tequila at a rock concert.

But we are here and, yes, are injuries are very similiar to traumatic SCIs. Others who will find us have concerns that the vast majority of trauma induced injuries do not: will my bout with TM or stroke or whatever reoccur? Where can I find a neurologist that knows what TM, Spinal infarcts, ADEM, Devics, optic neuritis, etc. is? If that's a problem we'll try to help. Give me a few days and I'll get a sticky up here with other resources specifically for TM and many of those also cover other spinal conditions.

For those born with a developmental spinal condition such as spina bifida and cerebral palsy, please, feel free to ask questions and freer to answer others and post resources you have found helpful. I know a bit about both but it, that knowledge, doesn't go very far.

So, let's get to know each other. Oh, and for those who need assistance and are not living in the US or Canada a general geographical area in a post will help us aim you towards technology or rehabs or doctors or whatever in your area of the world. Welcome!

[ev50]

Syringomyelia but not para yet.

I hope I won't be (paralyzed that is) but I can't really get any assurances one way or the other. It took a lot of worry and doctor visits just get to get a diagnosis. I agree with Sue about the frustration of not having a tragic story to explain the $#@* that is going on in my body. Anyway, I appreciate browsing this forum and hope I can communicate now and again with others in a similar situation.

[Wise Young]

I hope I won't be (paralyzed that is) but I can't really get any assurances one way or the other. It took a lot of worry and doctor visits just get to get a diagnosis. I agree with Sue about the frustration of not having a tragic story to explain the $#@* that is going on in my body. Anyway, I appreciate browsing this forum and hope I can communicate now and again with others in a similar situation.

ev50, welcome. Let us know how your progress with the syringomyelia. Wise.

[ev50]

Hi to all and thankyou Wise for your welcome,

Instead of me asking endless questions on my particular condition, syringomyelia; I wanted to ask whether anybody, particularly in Australia, or even in South Queensland, knows of a neurologist or neurosurgeon who is experienced with syringomyelia. I've been trying for nearly 3 years to find a Doctor who I can talk to when I'm frightened or just want to understand what is happening to me; and how to cope with the different symptoms. I do research and try to be informed and am glad that I have found this site; I would be glad to 'chat' from time to time.

I respect the medical professions but have found that some doctors and specialists don't understand or communicate, or even view this condition as having an impact on a person's life until it becomes very advanced. Even though I've been told my syrinx is a long way from being operable, and I believe it, it has affected me a lot. I used to have a small cleaning business, but spend half of my day lying down to try to get some relief.

Kind regards,

Evelyn.

[Wise Young]

ev, syringomyelia is a sufficient rare condition that relatively few doctors have experienced more than one or two of them in their practice. The key is to talk to the right doctors. By the way, one of the most experienced is Dr. Batdorf at UCLA. Wise.

[ev50]

Well, thankyou Wise for your following up on my posting, if that is correct, acually, I am determined now to do a computer course for seniors in the very near future, so I can be more proficient in the area of communication with the computer. I will now try to look up the Dr. at UCLA that you mentioned and see what I find. I am due to get another M.R.I. in 3 months to see what is happening with me and will have a lot more info. in my head to ask about this condition. Once again, thanks for the opportunity for contact and just the fact of being able to express one's point of view. Kind Regards, Evelyn.

[ev50]

Well, I've found my way to the site again and for me, being a novice at the computer, that is a plus. I was wondering if anyone reading or contributing to the forum has a thoracic syrinx due to trauma or idiopathic in nature and also no paraplegia. My problem is that no person can help me as of yet with all the different symptoms that seem to occur and it does seem to me that numerous secondary conditions come along. I woukd really appreciate anyone with this problem or having some knowledge of syringomyelia and how they cope, what helps them, any info. and perhaps their experience with this condition. Thanks and all the best, Evelyn.

[Zoey]

Hi Ev,
I just joined this forum to see if there was anyone to speak with on syrinx-type injuries to the spinal cord and repair. I have syringohydromyelia [syringomyelia and hydromyelia] which spans the T6-T10 vetebrae. I know one other person with thoracic syringomyelia. We also had in common an arteriovenous malformation [mine was removed], and herpes [hers was shingles, mine HSV2].
When I was diagnosed in 2002, I could barely walk a half block. Now I have no major neurological symptoms and easily walk four miles a day. I improved a lot with techniques I hoped would help decompress my cord and strengthen it, or my spine's ability to support the injury and not worsen it.
My left side was completely paralyzed in 1982 from a stroke that left the main artery to my right hemisphere completely permanently blocked. It took about 15 years to overcome this, so you know I was devastated when I was diagnosed with the degenerative spinal cord disorder.
I did my own research too, and it is paying off. Most important though is to not buy into the belief that there's nothing you can do, or that the situation is hopeless. Even if you don't succeed in stopping or reversing the cord deterioration you can maximize your ability to slow it down and adapt to whatever happens over time.
Because of my strokes and complications I was once "hopelessly" paralyzed, and had intractable [incurable] epilepsy that brain surgery did not cure (I'm now 8 years seizure free without drugs). It took the better part of twenty years to recover only to get the spinal cord injury.
It quicly became clear that this will be a "do-it-yourself" spianal cord treatment and repair job, because conventional medicine tends to ignore many ways in which we can adapt, improve, if not heal. Nor did I find answers or wisdom in non-conventional approaches. You have to find what will work for your unique situation.
I went to several neurologists and two rehab centers., a waste of time and mondy.The first neurologist couldn't even pronounce the disorder and none of the specialists I saw had any understanding of how I was experiencing the symptoms or of ways to help. Their attitude in general was to do nothing, until I was spastic, and then go for surgery--no way! There are plenty of options. First might be figuring out is anything you do contributes to compression of your cord and then address it, and so on, as you find ways to deal with your symptoms. Since yours is not accident related you may have some possibilities for reversing it. Did any docs evaluate you for some of the known causes of spinal cord dengeration such as B12, or folic acid deficiencies?
Below are a few links you may find useful on reversible spinal cord deterioration from deficiencies. It is hard not to feel ovverwhelmed, but your odds are so much better to at least make the best of it by researching, and looking for answers. If you get this, right more about your difficulties finding a specialist, where you are, where you could travel to, etc. Maybe some brain storming with others in cyber space will help in turning up a physician you can trust. I recently found a neurologist who agreed to treat me [no drugs, no surgery], so I packed my stuff and moved about 2000 miles to be in the vicinity even though I need no treatment now. I benefit a lot from having others to talk with who are dealing with this too. I do caution you not to run out and take supplements just because they helped others. Take the time to see what may or may not apply to you and do only what you are sure will be safe.
Zoey
LINKS:
Syringomyelia-like manifestation of subacute combined degeneration.
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract
Complete Resolution of Myelopathy In A Patient With Vitamin B12 ...
http://www.ispub.com/ostia/index.php...n1/vitamin.xml
Copper deficiency myelopathy produces a clinical picture like ...
http://www.neurology.org/cgi/content/abstract/63/1/33

[Shirley Hughes]

Spinal Cord tumor, Ganglia Glioma

Dr Wise

I wonder if you can answer a few questions please

Spinal Cord Tumor operated on some 14 years ago, could not be removed as would cause more paralysis, biopsy done to make sure not cancerous, indeed it is not, was told i would not walk again, 1 year later walking with stick, left side paralysis

Yesterday I had my annual check up with my neurosurgeon, have been having some extra weekness in left leg, aches pains and more fatigued than usual, Consultant said this is similar to Post-Polio Syndrome.

Would this be right? Would appreciate any feedback, from yourself or others on this.

Many thanks
Shirley

[Bhaskar]

TM : is there any hope ?

Respected Dr. Young,

I am suffuring from TM since May. 2003. I have only one question is there any treatment avilable today that can restore me to my previous state ?

[birdiecup]

hope i am not butting in

hi , i a mother of tm patient. he is 34. this just happened to him this last spring. we, He, has been through a lot, but doing better.. i wanted to get him involved in a group. he is ready now,,said so . so i am going to take a chance and post his email address so someone can invite him to join...i am sure he and cheryl could use a understanding helpping hand rob at eagleeagel0217@AIM.com if there is a group for me or my hubby , let me know. we both are having extensive, and risky back surgeries oct and dec.

[Sue Pendleton]

Respected Dr. Young,

I am suffuring from TM since May. 2003. I have only one question is there any treatment avilable today that can restore me to my previous state ?

Bhaskar, are you a complete or in complete TM suffer? Also, check out www.myelitis.org or pm me, click on my name, with your city and I can find the nearest support group for you. There are hundreds around the world.

[Sue Pendleton]

hi , i a mother of tm patient. he is 34. this just happened to him this last spring. we, He, has been through a lot, but doing better.. i wanted to get him involved in a group. he is ready now,,said so . so i am going to take a chance and post his email address so someone can invite him to join...i am sure he and cheryl could use a understanding helpping hand rob at eagleeagel0217@AIM.com if there is a group for me or my hubby , let me know. we both are having extensive, and risky back surgeries oct and dec.

Your son can find a nearby support group by joining the TMA. It's free and they can connect him with a support group.

For yourselves ask your doctor or search WebMD.com for groups. It does help to have city, state or country for aiming you at the proper help.

[ev50]

Hi Zoey,
Thankyou for your info, and I would be interested to know how you go with your neurologist, and how you cope with your condition. I found a lady in Queensland, with a Thoaracic Syrinx, who was running an information session on SM for disability week. Please keep in touch, I am still learning the computer and it takes a while for me to work this posting business out.
All the best
Evelyn.