Hi,

I think this is my first post to this forum although I have made a few to the rsd forum.

I am wondering if anyone here has been diagnosed with myelomalacia? I found out about mine last fall along with your usual run of the mill disc problems, spinal cord compression, and a benign tumour (vertebral haemangioma). After I found out i did some net searches and found very little except for about dogs or swine really lol. Then tonight, after a new neuro checked out some things due to increased and new symptoms, and he's ordering an up to date mri, and more referrals, I decided to google again and this time typed in new words like neurosurgery along with myelomalacia. This time all sorts of things popped up (about humans not dogs lol) so I began reading. It's all pretty specialized though. Some case studies.

I got to wondering if anyone here has this and what was done about it for them? I'd hate to see this thing progress in me and end up losing function of legs and/or arms. And if you have it too, what was suggested as treatment or non treatment so to speak.

I have other things wrong with me along with the spinal and the rsd etc., even a rare sort of brain tumour which i had treated, but i have never heard of myelomalacia before last fall ( and so gawd help me my gp even said "whatever that is" when he saw the spinal report from the neuro last year who found the spinal probs.)

?

thanks,
Ina

hi Ina

I dont have answers for you, but wanted to bump your post up in case anyone else does

Hello, Ina,

I encountered as you had - in the past; I think the search I was doing had been for obturator neuropathy (following dx) and I was met with similar: the results were mostly about canines. Hmmm - if I had a wagging tail, that'd would have been perfect. (But maybe my tail does wiggle a bit when I'm crawling or doing a push-pull motion on all-four on the floor - since I don't do so well when it comes to walking ).

Anyway: I'd have to review my med. reports to see all that my docs noted about my spine (it's just so messed up that I stopped looking once I've the reports since it tends to depress me).


However, I did do a search about myelomalacia. I don't know if you may have also seen the following so I'll share it:

myelomalacia /my·elo·ma·la·cia/
Softening of the spinal cord.
http://medical-dictionary.thefreedic...m/myelomalacia

The Q & A says surgical decompression can stop the progression:
http://www.steadyhealth.com/symptoms...ia_t61942.html

Thread of discussion:
http://www.healthboards.com/spinal-c...rders/346.html


At times, and depending on how doctors phrase things, I've discovered, too, that there are synonyms for some of the medical jargon, i.e., cervical myelopathy = radiculopathy. (That, I have been dx'd with along with lumbar radiculopathy.)

Because so much of the info. doctors state can be so overwhelming, some times, the questions arise after we've long left our docs' offices. Whenever I don't understand something - and because my doctors have stated that I should not hestitate to call with questions - I do ask for info. in terms that I can understand and what it all means - in terms of treatment and outcome.

Periodically, I also run a redundant search. Results, as you and I have seen, do change with time, when using search engines. Newer info. also becomes available. So... maybe do a periodic re-check, too.

Hi all,

My name is Kim. I am from Brooklyn. I had a spinal fusion and laminectomy done by supposedly one of the Best Docs in the state - well he turned out to be the worse!! First and foremost, if you are ever considering surgery in NYC by an orthorpedic surgeon, please let me know and I'll tell if it was my doc. He is very arrogant and even suggested to me that I was crazy and that I would feel better upon returing to work (after months and months of telling him I was in more pain post surgery) when in fact it turns out I have slight nerve clumping possibly due to inflamation to arachnoid sac (inner most sac of spinal sac). Well this condition has a slew of systoms; a lot of which I have; abdomen (groin) pain, swelling, numbness and burning, back and left leg pain that is burning ,stabbing, numbness, bladder problems. I found this out a few weeks ago and it could possibly indicate arachnoiditis which I am sure I have because of my symtoms. Has anyone ever had this? Do you know treatments? Will it get worse? What helps for pain? I take Baclofen and Oxy with very little relief. Should I continue with PT? I fear this has made it worse as I am in worse pain now after 2 months of PT. Does it go away if it is caused by surgery? A NS told me it might go away. I don't know anymore. I have a lot of distrust for the medical world. Docs lie to cover their mistakes reguardless of how much pain a patient is in and most of the supposedly very best docs do not take insurance and charge $600 per visit. Well I'm not paying that kind of money for a possibly an incorrect diagnosis! My stupid surgeon even had an MRI with contrast and CT Mylogram done post spinal fusion surgery and for some strange reason, the clumping was not reported?? Very weird as I've already had two docs confirm that it should of showen up on the films. I am getting the films this week and will bring them to at least 5 different Nueros to get their opinion on films and my condition. Does anyone think I have a law suit if condition is on films and my stupid surgeon didn't tell me? I have already done a ton of research on the condition and it is terrifying me. Any info would be greatly appreciated!! Thanks sooo much and I hope soon they find a cure for all of our pain - Kimmi