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Nennie
11-14-2016, 11:57 AM
Hi,

It's been quite some time since I posted on the board but I am having some pretty bad new symptoms. I have, over the last year, developed a lot more pain in my neck, shoulders and now my lower back, along with worse burning in my left leg along with tremors at times especially if I'm lying down on my back and reaching up toward the ceiling. I also have tremors and have trouble walking if I get real cold. So far no one at work has noticed and I haven't said anything. I have my annual MRI and appointment with my neuro set for Dec. 8th. I have worked a desk job since recovering from my surgery in 2006 and with my scoliosis and spinal cord issues I'm afraid I may be having to quit my job and try for disability. That thought alone terrifies me because it would mean 5-6 months with no income from me and only my husbands disability to live on. He had 2 brain aneurysms and had to have extensive surgery to save his life and with some cognitive issues from that the Dr's will never release him to work. I'm getting very nervous about it all. I'm not sure what kind of progression of problems to expect. :( :confused:


Thanks everyone!

Nennie :angel:


Congenital spinal deformity with 2 Hemi-Vertebra
Spinal Stenosis and Myleomalacia DX 6-29-06
Posterior Cervical Laminectomy C-5 C-6 7-12-06 No hardware installed

teteri66
11-15-2016, 09:54 AM
I guess you can only wait for the results of the new MRI to find out what is going on and whether the spine surgeon can do something about it. Try not to jump to conclusions.

Nennie
11-15-2016, 11:09 AM
Hi teteri66,

I've lived with this my entire life, you would think I would be calmer about it but after having several fairly good years where the pain was tolerable and then to have so much seem to happen at once has me a little freaked out. :eek: I told my husband I'm just ready to leave the work force. It's just getting to be too much and at 54 I want to be able to enjoy some time home with him. (He had 2 brain aneurysms and subsequent surgery in 2002 and is on disability.) When I changed primary doctors he did an x-ray because I had bronchitis and he said he just sat and stared at my x-ray. He couldn't get over it. Hope you have a great day!!! :) :angel:

teteri66
11-16-2016, 07:05 AM
Nothing like having impressive hardware!

Nennie
11-16-2016, 07:52 AM
I think that's what got him. I have no hardware. :cool: He couldn't believe how curved my spine was and the twist in my rib cage. He just said, "How do you work with your back that bad?"

teteri66
11-16-2016, 03:32 PM
Ahh, yes I see where you say "no hardware."

Perhaps that is one reason why...when the lamina is removed, it can lead to instability. Sounds like this doctor might help you apply for disability....

Nennie
11-17-2016, 06:56 AM
Good Morning teteri66! :)

He is an excellent Dr. He specializes in spinal cord disorders and damage. I'm terrified the disability people will turn me down. :( It took 18 months and a lawyer to finally get my husbands and he didn't know how to open a car door when he came home from the hospital. :mad:
Everyone I know says one look at my x-rays and MRI's and I should be approved immediately. Last night I was so desperate for relief that I took half a Tramadol and a Zofran (to keep me from getting sick). Pain meds make me deathly sick and give me migraines. My primary Dr thought maybe I could take the Tramadol since it doesn't have codeine but nope, made me very sick. That's why I only took half last night and made sure I took Zofran with it. :dizzy: I will post my results from my appointment on the 8th!

teteri66
11-17-2016, 10:49 AM
If it turns out that they new symptoms are due to instability in the cervical spine and a fusion is suggested, would you do it?

Nennie
11-17-2016, 12:09 PM
I really don't know a lot about fusion. I would have to do some research. There are places along my spine where they said the vertebra have calcified themselves together. (?) :confused:
My fear all along was that because of age it would eventually become unstable and shift. I hadn't given much thought to fusion because all my life the Dr's acted like there wasn't much that could be done. But with new technology comes new treatments.

teteri66
11-18-2016, 06:16 AM
That would mean some of the vertebrae have naturally fused together. That happens when the discs dry out and flatten to the point that the bones are touching.

Nennie
11-18-2016, 07:43 AM
Thanks. I had letters from my original Dr. that i saw from age 3 months to 16 yrs and in those he stated that parts of my spine were already calcified. I'm so ready to get this appointment over. I can deal with any of it if I just know which direction we are going. Then I can plan my next step financially and maybe get some relief from all these new symptoms. :)

Nennie
02-02-2017, 12:01 PM
Just an update. Saw my neurosurgeon who sent me to a neurologist that specializes in movement disorders and to an orthopedist that specializes in scoliosis. I have an appt on Feb 23rd for an MRI of my brain with and w/o contrast and an MRI of my thoracic spine which is where my worst curve is. They are thinking it is either spasticity or dystonia. Either way the belief is it is coming from my spinal cord and may indicate new damage. Will update after all i get my results. :angel:

teteri66
02-05-2017, 11:15 AM
Hopefully you can get an accurate diagnosis that will lead to a plan of treatment that will result in some pain relief for you. Please do keep in touch!

Nennie
02-06-2017, 06:53 AM
Will definitely keep in touch and give an update as soon as I can! :)