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notme

Extremely helpful member
Joined
Apr 3, 2011
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2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hello

As some of you might now, my neurosurgeon feels it's very possible that I have ALS based on his clinical exam and my very marked atrophy in several areas of my hands/arms and leg weakness.

Here is the problem. The neuro feels sure that this atrophy and all is not being caused by my neck after reading my MRI films.

At the request of my daughter, who doesn't want to even talk about the possibility of a MND, I sent my reports to the spine institute for a 2nd opinion. THEY think they can fix my neck.

The ALSA told me specifically to not have any unnecessary surgical procedures because if I do have ALS, apparently, surgery can aggravate it.

So, here is my problem. Do I let them fix my neck or do I wait to see what the ALS clinic has to say next month?

I'm just floored--another person living here that posts is going tomorrow for 2nd or 3rd EMG and I can't even get ONE done that my neurosurgeon ordered. Something is wrong with this system!

Thanks for input
 
No do not get your neck fixed. Surgeons just love to fix everything with a Cut. You cant possibly have surgery without EMG evidence of a radiculopathy causing your symptoms. Anyway you look at it you have to have that EMG before you move on and do anything invasive.
If the EMG finds evidence of a radiculopathy that is causing your atrophy and weakness then thats great, you can get it fixed, but you need that hard evidence.
 
we have someone who used to post here, is still a member not active though..Has had about15-20 EMG.S.
 
Regardless of diagnosis you never want to have unneccessary surgery. You need to have a definitive answer before you make any decisions.
 
i had neck surgery cus they thought that was causing my foot problem. and when i got worst the surgeon said sorry but there nothing i can do. charged me an arm n leg. 3yrs later diagnosed with als.
 
Hey notme , How are ya? I had neck problems found by an MRI. Neuro said I had 6 Bulging discs with 1 partially torn. Theyn wanted to send me to a pain clinic but I had no pain. I saw a Chirpractor 3 times a week for a little over a month and my neck problems are history
 
Neck surgery came up at my clinic appointment earlier this week. I don't need it, the conversation just kind of morphed into the subject from discussing my neck weakness. The opinion of the clinic director at Hopkins, is its just virtually never a good idea for someone who has ALS. She said a person should always discuss it with their neurologist and neurosurgeon, but speaking in generalities, its effect is usually detrimental. PALS either never fully recover, or they experience other losses perhaps amplified or sped up due to the surgery itself, whether it be the anesthesia (affecting breathing), or just the stress on the body from surgery.

Regardless of whether it is your choice to go with surgery, I, too, would caution you strongly about following through with it until you have a firm diagnosis.
 
I wanted to add, that about 6 or 7 years ago I had a total of 7 herniated discs in my back, three in the cervical area, and 4 in lumbar. No surgery. I went through a series of epidural injections which helped tremendously with the pain, and was faithful in going to physical therapy. Eventually it all just settled down on its own. Every so often my lower back will go into spasms and I'm stuck immobile for a few days, but, I'm so glad I waited it out.
 
HI All

I've been waiting out back and neck issues for years--but with the atrophy and falling and getting hurt all the time, I'm getting more worried.

I don't know what to do. The spine place thinks the atrophy and all is being caused by my neck--the neurosurgeon I saw specifically said it is NOT the cause.

Guess I can afford to hold off on everything til I see the ALS clinic people next month. The problems I'm having just seem to be getting worse.

My legs are doing a weird spasm thing--just jumping on their own--I can stop it by standing on them. I guess it's clonus, if I'm reading those symptoms and video I watched correctly.

I'm not a 'twitchy' person, though. The only fasciculations I have seen are ones on my hand that the neurosurgeon actually pointed out to me.

I keep holding on to the pain issues I'm also having--thinking it must mean not ALS. But, with my neck and back issues--pain is to be expected.

in the final analysis--I'd probably only let them do surgery if they can show me that the neck issues are causing the progressive weakness and atrophy.

Thanks for input, folks. It's appreciated.

My insurance (the crappy one) did finally authorize the EMG/NCV and made me an appt with local neuro for next Tuesday--but I'm hesitant to go. The neurosurgeon office is going to see about ordering whatever rule out bloodwork should be done. I want to go to the ALS clinic with as much already done for them to review as possible.

One guy here apparently went there, though, and they didn't do an EMG on him at all--anyone know anything about the ALS clinic in Tampa at the University of South Florida?
 
You must have the EMG. It will answer the Question ?ALS or ?Radiculopathy. You have been wanting one, so after everyones positive input, sticking up for you cause you can't get one, how the heck could you now be hesitant about having one. Makes no sense at all. A bit of a smack in the face :( And it's next week!
 
LOL

No, the hesitance is having it done by someone who is not a specialist--not in 'having it done". I don't want to have it done more than once. I have no tolerance for pain anymore--even things most wouldn't consider painful cause me pain.

I had a liver biopsy and nearly jumped off the table. They had to knock me out. Something in me makes relatively minor things cause me a ton of pain.

Definitely will have the test--just have to decide whether to have it here locally or wait til/if Drs at the clinic order it. I was told that they both (Vu and Katsin) like to do their own.
 
Well that makes sense. Check up on who would be doing the EMG next week. He/she may well be an expert at it. They really are not too bad, pain wise. I have had 5 now. I had a neck injury and it resulted in a radiculopathy, that was the first 2 EMGs. I went on to have my C4 and C5 grafted and plated. I thought it would help with my arm weakness/ fatigue. It did return my weak hand back to normal strenght, but my other symptoms got steadily worse even while in hospital recovering from the surgery. In retrospect it was a daft thing to have done, not one of my better decisions in life LOL
I can asure you they are not as traumatic as a liver biopsy and not as traumatic as a Lumbar puncture either. The LP was the only test that I have EVER burst into tears over. My poor hubby had to come and do it after the resident failed 3 times. Poor resident. His bosses wife bawling her eyes out, bet his hands were shaking, no wonder the poor thing was trying in completely the wrong place LOL. Life is a bit OFF at times .Aly
 
Mast Spinal tap I had kept me in the hospital for 10 days. NEVER will I have one again. One I had caused some sort of spasms in my legs and the doctor was yelling at me to hold still--I had no control over my legs at all--sheesh. I hate doctors 95% of the time
 
That could have been your adrenaline. Mine took a lot longer than expected, and I was stuck multiple times until they finally got my fluid.

Afterward my legs wouldn't stop shaking for at least 5 maybe 10 minutes. Definitely was not fun.

But I agree with what everyone else is saying. Get the EMG done first. Try to get an idea or clearer picture of what's going - before any surgery.
 
One thing we have learned as far as EMGs go -- my husband has had two now. One was early in the diagnosis and one of the results were borderline - that was done by a neurologist - not a specialist in ALS. The next EMG was done somewhere else and they were more precise and even put warming blankets on particular areas to get a more accurate read. Those results were not borderline. Time could have been a factor for it - done a year apart, but just a tidbit of knowledge to consider.

Maybe you can ask how many ALS patients have they tested or if there is any additional ALS education/training.
 
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