Frustrated. EMG + MRI = ??. CT Myelogram?

[Dutch]

I am writing to vent a little frustration and hopefully get some insight from those who have gone before me. For the background, you can check out this thread: Hoping For Insight in Tulsa.

In short:
Following MVA, I've done PT, chiro, etc and have had 2.5 years of chronic neck pain and progressing weakness in my left arm. Pain Mgmt doc sent me for EMG to see about carpal tunnel. It revealed no CTS, but identified motor innervation loss in tricep and he declared a "left C7 mild-moderate radiculopathy". Follow-up MRI shows several minor bulging discs, mild foraminal stenosis at 1 level, mild narrowing of foramin at other levels & facet joint and uncovertebal hypertrophy at multiple levels.

I had some injections yesterday and my pain management Dr. is going to send me for a CT myelogram and refer me to a neurosurgeon (should hear from them Monday to schedule). I had already gotten a referral from my chiropractor and went today for my first consult with the neurosurgeon he sent me to... He reviewed the EMG report, MRI films and performed a physical exam. He then proceeded with the following:

1) He drilled me about the "diagnosis" which was reasoning behind injections and it is clear he thinks it is inappropriate (perhaps harmful) that they have been done.
2) He told me that I should quit taking all of the medications I am on (with Dr. supervision). When I agreed with him that the pain management has been somewhat ineffective and asked him what to do instead, he told me I should get off all the meds and see how I feel. When I asked "what happens if I stop the meds and come back in 6 months with continued high levels of pain?" he told me he doesn't answer hypothetical questions. When I pressed him and tried to respectfully ask him to pretend I was off the meds for 6 months and there was still significant pain and I was in his office again, he just said "there is no organic explanation for your pain".
3) I asked him about the muscle weakness (which is obvious to me and showed in the exam), he showed me how my reflex was within normal range and there was nothing on the MRI, so I have no radiculopathy.
4) When I asked him to explain what was behind my problems, he just got flustered and told me to go to the Mayo Clinic and they would tell me the same thing.
5) He asked me about whether I had "settled my case" or "who my attorney was" and he seemed a little surprised when I told him I didn't have an attorney and settled the insurance matter some time back.

So the bottom line I got from him was:
1) Stop taking all the meds because you don't need them. Your body will produce endorphins without the meds. If you hurt, there's no explanation so just deal with it.
2) There is nothing wrong with you, so stop shopping around for someone to fix it.
3) You can keep seeing your other docs and you might even get someone to do surgery, but you don't need it and it won't help you.

I understand the isue of tolerance and addiction (which is why I have repeatedly avoided the increasing of pain meds - and in fact self-reduced my dose to nearly 1/2 of its previous value about a year ago).

Is there something I'm missing?!? Is the EMG result irrelevant just because my reflex is okay? Is it possible I'm somehow subconsciously causing lost function in my left hand?!? I'm not too proud to accept any answer - I just want to be well and not hurt every day...

Someone please help me.... Something doesn't add up and I don't know whether I have unrealistic expectations that someone can actually fix my problem - or if I must find best way to manage the symptoms until it is far worse - or if I just stumbled across a Doctor with an unreasonable or outdated bias against the condition(s) or the treatment(s) or what....Is this all in my head or should I just accept a life of pain?

Anyone else run across this? I'm more confused and frustrated than ever....

Thanks in advance,
Frustrated in T-Town

[trkdoc714]

Dutch,

Don't be frustrated with the neurosurgeon's answers. It almost sounds like he had the mindset that he was going to be a witness at an insurance trial, eh?

I had a neuro tell me he couldn't see anything to cause my pain either. This was after the CT Myleogram he ordered. He also didn't have the benefit of seeing my latest MRI as the radiologist didn't respond to his request. He acted like this was my fault.

I discounted his opinion as he made his diagnosis based on 75% assumption and largely ignored the CT results that he ordered.

This guy isn't the only neurosurgeon with his shingle out. Get as many opinions as you can before deciding on a course of action. Make sure your choice communicates well and understands your pain and expectations. You'll know when you find the right surgeon.

Good luck to you,

Bob

[spinches]

This surgeon sounds like one of those who is not particularly motivated to work with a patient and find out how to help that person. I have the impression that there may be quite a few like that.

I also encountered a consistent tendency (across 4 surgical consults) for both the neuro and orthopedic surgeons to disregard my EMG results, even though they had requested I have them delivered to their office prior to the consults. They focused entirely on the MRI images and my central stenosis issues. They offered surgical opinions based totally on whether the stenosis was bad enough to do surgery now or later, and at what cervical levels. I had to draw their attention in all 4 cases to the neurologist's conclusion that I have significant loss of innervation in my left arm. When I did, they reacted as though they had not looked at the EMG results. I told them that in fact I have tested my arm strength repeatedly at the gym, and don't find much difference between my left and right arms, beyond what I would expect in a right-handed person. The surgeons all said that this kind of evidence was more convincing or even "more accurate" than the EMG results. I would think that the surgeons I saw would have been very concerned if a patient showed measurable weakness or muscle wasting, based on what they said to me. They all appeared to agree that muscle weakness is a serious neurological symptom, and an indication for surgery.

The surgeons I consulted in Germany and the UK seemed to attach more importance to my arm symptoms than did the local guys in the U.S.

Keep looking until you find a doctor who seems motivated to help you solve your problems, and who is willing to work with you in a collaborative way. You have a right to know about what evidence they would use to decide whether you are a candidate for whatever surgery. All the people I saw were willing to tell me what symptoms they would consider as urgent indicators for surgery, and what I should watch for in the future.

Sandra

[Catherine]

Hi Dutch,

Go ahead and vent! I have a thread on here I titled "Frustration" and I completely empathize and agree with you. I live in a very rural part of Wyoming (most of it is) and the medical community is impossible. My PCP that I have seen for three years formy issue refused to order a new MRI so I could see a good, reputable surgeon and told me "he didn't need a new one, he wasn't ording one", along with all of the statements you have heard, such as "oh you can find someone who will cut on you". I have finally found a Pain Mngment dr that just moved here from Montana who has ordered new tests and done the referral I need to get into Stanford Medical Center.

Don't give up in your quest to find out what's wrong and why you hurt. I have been through 6 Drs. in order to find one who will help. Pain isn't normal and we don't have to hurt. Good luck and vent anytime if it helps.

Catherine

[SemperFi]

Dutch,
Keep getting opinions. I agree that there will be someone willing to do surgery somewhere however it might be someone that can actually help you. It's not that I'd say for certain to have surgery just to keep going getting your diagnostics and opinions at this point.

I had 10 years of lumbar ESIs and have been on low dose opioid pain medicine for 10 years as well. I'm actually very glad I followed my own instincts with regard to not having more surgery even tho I had something like 5 or 6 recommendations that were in agreement for a 3rd surgery but at least the meds and ESIs allowed for the time in between to be tolerable and the autofusion of my own L5S1 area to happen.

You still have options right now.. you still can get opinions and proceed from there so perhaps that's one positive way to look at what is being said no matter who is saying it.

Vent away meanwhile as I think everyone here has been thru his or her own version of the spine patient wringer to some degree! Wishing you better days

[SemperFi]

Dutch,
was trying unsuccessfully to edit one of last statments to the effect that because many if not most of us have been thru the spine patient wringer we do understand the frustrations/feelings that you may or do have so please do feel free to vent away. It can just be such a maze sometimes getting thru all the BS to find solutions.