First visit with my neurosurgeon

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First visit with my neurosurgeon

Postby Metalmommy » Mon Sep 24, 2012 9:18 pm

Well saw my neurosurgeon today, he did not see any Chiari malformation in my MRI. He is going to order a full back MRI so that he can see if I have a tethered spinal cord. He does not think my syrinx or bulging discs are causing my pain, he says my syrinx is small and thin (T1-T5 2mm wide) and that usually with the types of symptoms I seem to have it happens when the syrinx is much larger. He did notice the weakness on my right side, and like every doctor has said my current MRI doesn't make sense with my symptoms. I don't know, this is all very frustrating. I was also told not to do the epidural, we don't know why I am hurting so it's not a good idea. I just don't get how they all say I shouldn't hurt from bulging discs, and that my syrinx isn't causing pain. I hurt, I have pins and needles, a tremor and spasms something is wrong! I like this guy a lot, he seemed to listen more then any other doctor but I still feel this utter frustration with everything. I want to be out of pain, I want my life back and it just doesn't seem like it's going to happen.
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Re: First visit with my neurosurgeon

Postby pmaxwell » Tue Sep 25, 2012 3:42 pm

hang strong - at least you have found someone you like and who listens, that is a big step. You might ask about the possibility of scar tissue (arachnoiditis) causing nerve damage. Scar tissue can be hard to detect unless they are specifically looking for it. I know there are also nerve test they can do to look for damage.

best wishes always,

Patricia
Together We Can...
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Re: First visit with my neurosurgeon

Postby Metalmommy » Tue Sep 25, 2012 11:49 pm

I will after my next set of MRI's. Only in the past month have I had neurological symptoms, I am scared that if this is trauma induced it's going to get worse and quickly. The amount of pain is almost unbearable, I baked cupcakes yesterday and the standing to mix the batter then frost them was horrible. I tell the doctors this and it's dismissed, I really don't think it's whiplash because my spine hurts not my muscles. I have no idea why I all of a sudden got the pins and needles, the weakness and the tremor but my neuro doesn't want to say it's the syrinx. He actually suggested it might be due to smoking, but I've been smoking for years and I really doubt that has anything to do with it. Ugh I don't know, I just wish this never happened, that I could go back to my knee hurting like hell but otherwise have a pretty normal life. I want another baby, but I worry that if this gets worse how can I take care of another child? Sorry I am rambling and pouring out all this stuff but I have no one really who gets it. Thanks for reading.
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Re: First visit with my neurosurgeon

Postby pmaxwell » Wed Sep 26, 2012 9:02 am

Always keep in mind that stress will increase symptoms so try to find ways of dealing with it and hopefully the symptoms will decrease a little. Instead of standing when cooking, could you use a bar stool? I don't know if it would help since the pain is in the back, just a thought. Doctors cannot feel what you are experiencing, so just smile and nod (just a metaphor, I doubt you feel like smiling). But make sure they treat your symptoms. It is easier to stop pain early than later. The longer you have pain the harder it is to break. I'm not saying you can always get rid of pain because we all know chronic pain is often a part of these disorders but the doctors should make it bearable without taking away your quality of life. Keep posting and I'll keep reading.
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Re: First visit with my neurosurgeon

Postby eebogan » Tue Oct 16, 2012 8:38 pm

I was in the same boat until my syrinx resolved and a new one formed. After a year of doctors telling me I was tensing my muscles up because of depression, they finally started testing again. My advice is insist on follow up MRIs to monitor it. I have yet to meet with a neurosurgeon. But I feel the same way, the doctors just want to not listen and blame it on something else but keep dragging you along. Keep your head up! I will let you know if anything comes out of it the next few weeks to possibly give you ideas on a direction.
Idiopathic Syringomyelia. Fibromyalgia.
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Re: First visit with my neurosurgeon

Postby tennesseewalker » Sun Nov 04, 2012 9:14 pm

metalmommy, smoking causes circulation to decrease, and your spinal cord has a blood supply like the rest of you does. I've seen someone with a black spot on the tip of her finger and when I asked her about it she said that circulation to that area stopped because of smoking. She told me that her doctor said if she didn't quit smoking immediately, she was at risk of having more areas without circulation, and she probably already had many more that were not visible. She stopped smoking cold turkey.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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