NMD versus Cervical Spondylitic Myelopathy

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Hagins

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Hello my friends,
I am facing an extremely difficult decision. My symptoms started about 10 months ago and continue to progress. I have a spastic gait, muscle loss, loss of balance that has led to several falls, muscle cramping in my legs and ongoing fasciculations primarily in my legs but also in my torso and arms.

My first medical visit several months ago was with a general practice neurologist who referred me to a neurosurgeon to review my cervical MRI. The neurosurgeon diagnosed cervical spondylitic myelopathy between C4-C5 and C5-C6. He ultimately recommended surgery but could not attribute my symptoms to the myelopathy. My neurologist however believes it is possible that my symptoms are caused by my "slinky neck".

My neurologist also referred me to a NMD specialist neurologist at the Oregon Health Science University in Portland, OR. Over the course of two visits he did a battery of blood test to rule out mimics, reviewed my cervical MRI and did an extensive EMG of my leg, arm and back. He did not present me with any EMG test results but at the time of the EMG test mentioned there were some results that were not consistent with ALS. However, in a subsequent phone conversation he strongly recommended that I not get the surgery and that the myelopathy was not the cause of my symptoms.

My dilemma is that I have the recommendation of the first general neurologist and the neurosurgeon to proceed with surgery and an opposing recommendation not to get the surgery from the ALS specialist neurologist. I understand and accept the fact that ultimately any course of action is my decision and my responsibility. However, it sure would be helpful to have a consistent medical opinion. I have respectfully requested the doctors talk to each other but that does not seem to be in the cards.

I would be grateful for any insight from members of the group.
 

Nikki J

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Hi
sorry this is obviously a very difficult time.

youare entitled to the emg report and given the comment about not fully consistent with ALS it is important to see it. I would also consider a second neuromuscular opinion.
 

lgelb

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I'm sorry for your troubles. You don't want to fall again, so I would get a cane, walker/rollator or wheelchair, whatever you need.

Next, I would get a full EMG report and all your other records, as is your right. You may be consulting someone else and clinics aren't always stellar about sharing records in a timely manner. Also, we can be more useful after seeing your de-identified EMG if you'd like to post it.

As near as I can make out, only one doc is really recommending the surgery -- the one who would perform it, and even he isn't willing to attribute your primary symptoms to it. In spine surgery, we really don't want someone who wants to go fishing.

Your general neuro "thinks" the symptoms might be from your "slinky neck?" -- that is not a surgical rationale. The MND specialist recommended against it, but did he have a suggestion as to other differentials to consider or other next steps?

I removed the diagnosis date from your profile because it doesn't sound like anyone has diagnosed ALS, but even if they have, we would always want a second opinion for that as well, especially given a difference of opinion as you have outlined.

It's a fairly frequent scenario that ALS is diagnosed around the same time the possibility of spine issues is raised. Spine problems are common as we age, so they can be blamed for symptoms that ultimately are found to stem from ALS. We don't have enough information to determine whether that could be true in your case. And of course there are many neurological disorders in between.

In the same vein, I would always see two reputable surgeons who believed that surgery would help and could explain why and how, before signing on to spine surgery, not just because spine surgery is a lucrative, risky and overutilized modality, but because you want to feel confident in the surgeon's expertise and knowledge, to contemplate putting your spine in those hands.

My recommendation is a second and then possibly third opinion on both the surgical and medical sides. Preferably, this could be within a single center, where they would be more likely to consult with each other. OHSU I believe is as good as it gets in Portland, so perhaps the ALS specialist could refer you to a surgical colleague that he believes could help generate a definitive diagnosis, and so on? Or, there is always Seattle.

Best,
Laurie
 

Hagins

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Thank you both for the your response and advice. I have actually had two EMG's tests performed, one on 1/26/21 and a seemingly more extensive one done at OHSU on 5/18/21. Following your advise, I requested my test results and received the results from the first one just yesterday. The more recent one won't be released for at least another week.

I am attaching the ID-scrubbed tests results of the initial test.

Meanwhile, after meeting this week with my "general" neuro (who still feels I should have the surgery) and the neurosurgeon (who describes the surgery as a Hail Mary as far as resolving my symptoms, but is still willing to perform the surgery) I have decided to postpone my cervical spine surgery.

I so appreciate having your feedback... and access to this forum... through this difficult and frightening time.

H.
 

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Nikki J

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I think you are wise to wait on surgery. Once you see the second emg you may know more but another visit with the neuromuscular and a second opinion in that specialty would be my thought unless the second emg takes things in another direction. If there is still any thought of surgery another opinion there too

uncertainty and conflicting opinions are very stressful when the subject is so serious
 

Bestfriends14

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I agree. With your falls and your EMG results, I would get a second opinion from another neuromuscular specialist, before plunging into this type of surgery. Because you have had several falls, you should get a walking aid to keep yourself safe. I'm sorry you find yourself in this position . The conflicting information must be incredibly confusing and frustrating. Please keep us in the loop.

Take care and keep safe.
 

Hagins

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I received the narrative of the results of my second EMG study done about 4 months after the first study. I did not receive the raw data from the test. Do you think it is important for me to request the actual numbers and graphs, or is the narrative enough information for other doctors to use?

I am saddened but not surprised by the results. It seems the significant result of the test is a "suggested diagnosis" of Motor Neuron Disease. Of course one can hope, but realistically I wonder how often does such a diagnosis turn out to be something more benign than the progressive, terminal outcome of ALS?

I am attaching the ID-scrubbed results from my most recent EMG and would appreciate your opinion of its significance. Thank you all.
 

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Nikki J

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yes definitely any second opinion would want the tables as well as the narrative. We would be interested too if you obtain them. The specific muscles and pattern are often more informative than the summart Are you arranging to be seen in an ALS clinic? That should be your next move. This current doctor looks well qualified but I don’t Think ALS is his specialty. If this is ALS remember you are not dead yet and many of us have a lot of living left

keep us posted
 
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