Share Resources: Advice from Professionals on Spine Health & PN

Fellow combatants,

Today the Cleveland Clinic sent a link to one of its' podcasts in which Neurosurgeon Edward Benzel provides a variety of advice to those who suffer back pain and want to explore options. Perhaps you would find it as informative as I. Here's the link.
http://my.clevelandclinic.org/podcasts/health-essentials/neck-back-pain-causes-treatment-and-everything-in-between-with-dr-edward-benzel

I've been diagnosed with; idiopathic PN, spinal stenosis, degenerative disc disease & arthritis mostly at the base of my lumbar spine and a tiny bit at my cervical spine. I'm pretty convinced that I have have mild to moderate PN but am suffering and degenerating hard and quickly because my lumbar is falling apart almost day by day. My symptoms are getting worse so fast and seem so related to actions and movements. Does anyone have experience or knowledge of this? Mostly I'm trying to find a path to exploring surgery. I've done PT for years and things have only gotten worse.

@darrenp Have you had a consultation with a spine specialist?

Hi Jennifer,
Yes. My first visit to an orthopedist who is a 'spine specialist' was to see his nurse practitioner. After the evaluation including requisite X-rays she stated that the doc would definitely not consider me a candidate for surgery. They're going to give me an epidural as a diagnostic tool but in their words to be absolutely sure. I appreciate they don't want to cut into me recklessly but am concerned that it's the combination of NP and 'slippage' in my spine that's compounding my problems. Thanks for your interest Jennifer. Now I'm just trying to connect with like patients or docs who understand both issues.

Jennifer,
I paint as well! My niece at twenty has spent most of her time around horses. Cheers to you!

@darrenp Cheers! Painting is so enjoyable for me to express the beauty that I see.

As for your spine question, did the surgeon tell you why you would not be a surgical candidate? Sometimes they back out because they think they can't solve all your pain. You could get a different answer if you got another opinion. No surgeon wants to fail and have an unhappy patient writing negative online reviews, so they can pick and choose which patients they will help and usually, those are the cases that they expect to have better success rates. Insurance companies also record their statistics and rate surgeons, so they are careful with their reputations. An epidural can also be used to weed out patients they don't want to operate on. I had a lot of surgeons refuse to help me because they misunderstood my case and symptoms. I advocated for myself and finally came to Mayo where I was helped and had surgery that solved all the problems. Still, surgery is a big step and should not be taken lightly. There should be a clear need that surgery may be able to improve a condition.

Jennifer,
Thanks for this beautifully articulated paragraph. The ideas here are going to be my MO as I enter more meetings with various specialists.
One take away is that of being compassionate towards the various members of the care team. If they're constrained by reviews and insurance etc... then not considering their predicament will only add more friction to getting the care we need.
To be clear I've only been seen by the surgeon's nurse practitioner. I believe that's the title. She stated that, 'Doctor W (the surgeon) would definitely not consider this a situation needing surgery. ' That's after reviewing my Xrays which show stenosis and Spondylolisthesis a spinal condition where a vertebra slips out of place and onto the bone below it. The problem for me is that they perceive these two conditions as slight enough that they still consider me a patient that should go to PT. For me the challenge is that I'm wrapping up close to five years of PT that for sure has helped but also not. During my four or five years in PT I eliminated a lot of pain but witnessed a slow progression of numbness in feet that went from transitory and only in the left foot to more permanent and in both feet. Eventually it got bad enough that I asked to be seen by other specialists. The neurologist found the idiopathic neuropathy.
I do believe there is a problem that happens because I have both the spine issues and the IPN. At the Orthopedist the nurse practitioner said, 'Oh I'm so sorry you've received that diagnosis of IPN. It can be very debilitating.' Although I appreciate the compassion I had already spent enough time on my own feeling desperate, lost, terrified etc.. about the IPN. I wasn't there that day to discuss it. I was there to get help for my back issues. I sincerely believe the doctors have this opinion that with the IPN I might be in some stage of denial about what's happening to me. I can see it in their eyes as we stare past each other and they express their sympathies and repeat that they won't consider surgery. This points directly to what you've written, that they're potentially afraid that someone with IPN is not going to be a great success story for them. It's obvious that all kinds of things can go wrong. Further disturbing nerves that are struggling from IPN might further disturb them! It's a bit of a conundrum.
I'm certainly not going to push for surgery if there's resistance. I'm not going to rush this.
We're in the process of scheduling me for an epidural. You mentioned this as a system to weed out candidates for surgery. Can you elaborate on that? For example if I get the epidural and there is little response in my condition then I'm assuming I'll get further rejected for surgery. How did that go with you?
Thank you Jennifer! Darren

Jennifer,
I'm also treading very slightly into PT again with a focus on only strength building. I think one of the issues is that in the land of PT they're not adapt with IPN. They had me doing stretches that I believe might have been only aggravating the IPN. Turns out the nerves don't like to be stretched when they're stressed. I'll keep working hard at the PT and see where that takes me but I'll be 'working' the potential for surgery at the same time.
Thanks again Jennifer!

@darrenp Hello Darren. First, an idiopathic diagnosis means they don't know the cause of your leg numbness. Do not let that define you. They are not connecting this to your spine imaging, and it has become an excuse to not look any further. That being said, if a surgeon doesn't know what the problem is that causes pain, you wouldn't want them to take a guess and do surgery. They may not get insurance clearance if they can't explain why surgery could benefit you. Don't feel that you owe this doctor anything. If a spine injection doesn't help you, they would likely blame the idiopathic diagnosis as something unrelated to the spine. If the injection does help, they may not know how to explain why. Surgeons can also postpone surgery by recommending injections, and there are some serious risks to them.

I was in this scenario myself, and 5 surgeons refused to help me. I had cervical central canal stenosis with bone spurs pressing 5 mm into my spinal cord. I did not have any nerve root compressions or lumbar spine problems other than a bulging asymptomatic disc. I had pain all over my body and it could change location of the pain with the position of my neck. It began as an sharp ankle pain if I turned my head to the side, and that pain stopped if I looked forward again. I had 2mm of retrolisthesis (backward slipping) of C5 over C6, and I had muscle spasms in my neck. After the injection, I started charting my pain symptoms as they returned on body drawings, so I knew how fast it was progressing. During that time, on MRIs 9 months apart, the bone spurs doubled in the area where my C5/C6 had collapsed by 50%. As my symptoms progressed over 2 years, I had some numbness and tingling in my lower legs. The pain distribution changed location between standing, sitting and laying on my back. I developed a limp, and leg weakness and had trouble emptying my bladder completely. I could not walk with a normal gait unless my physical therapist realigned my cervical spine, and then I could walk normally again until the next muscle spasm shifted the vertebrae. These are symptoms of cervical spinal cord compression that was missed by all 5 of those surgeons. They expected lower leg symptoms would only be caused by a lumbar spine problem, not spinal cord compression in the neck.

This is called "funicular pain" or referred pain. I had an epidural injection in my neck, and it took away absolutely all of my pain for 5 days. Then pain slowly crept back in over several weeks, and by 4 weeks later, it was the same as before the injection. The doctor ignored the results of that diagnostic injection probably because he didn't understand why. The injection works by reducing inflammation, and that buys a little bit of space for the spinal cord inside the central canal. My compression was early at this point, so it relieved all the symptoms. I was dismissed by this surgeon, and I had to seek a 6th opinion which I did at Mayo. It was in reading a published paper of a surgeon I wanted to see from Mayo that I found the term "funicular pain" and I looked that up. That lead me to medical literature with cases like mine that were described as a "rare"presentation of symptoms of spinal cord compression, and although there is no diagnostic test for this, an epidural injection that relieves the symptoms suggests this is a possibility. I knew in my gut that this is what the surgeons had missed. The proof is in the results of the surgery, and my C5/C6 fusion fixed all the pain I had everywhere, no more leg weakness, pain or a limp.

I found this literature right after I was denied help because supposedly it wouldn't help all the symptoms and I was told I could have an inflammatory problem like MS. There was no imaging suggesting MS on my scans and the doctor suggested a spinal tap to check. No thank you. I discussed with a neurologist who had seen me and a vascular surgeon at this medical center who has seen me for a few years, and no one would help me address the literature with the doctor who missed it and I didn't think he was going to listen to me. They advised me to get an opinion elsewhere. If you try to point out a mistake by a prominent surgeon who missed the diagnosis, it isn't going to go well.

It sounds like you are at a dead end with your surgeon, and a PA shouldn't be making a judgement that should be coming from a surgeon. Only the surgeon can decide if he will or will not operate. I think your best bet is not to waste more time with them. Find another good surgeon for a consultation which you will need to wait for, and then wait again if surgery is offered. You don't need to do the injection unless you want to. I don't think it will change your outcome with this doctor. I don't know the specifics of your cervical issues, but having both cervical and lumbar issues, and if there is cord compression from the listhesis (slipping) may be what the issues are. When I started with Mayo, I sent this literature and asked, is my case like this? That gives them a chance to consider it before it's missed and never to be considered again, so ask upfront.

This is the medical literature that changed everything.

Eur Spine J
. 2010 Oct 13;20(Suppl 2):217–221. doi: 10.1007/s00586-010-1585-5
"Cervical cord compression presenting with sciatica-like leg pain"
https://pmc.ncbi.nlm.nih.gov/articles/PMC3111492/
Do you have another surgeon in mind for an opinion?

Jennifer

Jennifer,
Thank you! You’re volunteerism at this is remarkable and deeply appreciated.
Quick questions before I go too far;
1
I hear these ominous statements about the epidural injections and yet every time I research and read about them it seems very rare that they create complications. I’m not sure what that’s about. It seems like it helped you find your way. Is that right?
2
How did you find out about the spurs? I’ve had Xrays and MRI’s and no one has noted or seemed to have seen spurs. I’m curious if they can be in there without showing up on Xrays or MRIs
3
You talk about switching doctors. I’ve been reading a lot about different practices and curious about contacting others. Do you know anything about looking outside of ones own state? So I found a DR Latov in New York who seems to be exceptional with idiopathic Peripheral Neuropathy but they don’t take my insurance. Would I just buy separate insurance?
4
Was Neuropathy ever a part of your situation?
You’re narrative about spinal issues is very helpful! I do think I’m having lots of complications from spinal issues. I have the diagnosis of IPN, spinal stenosis, slight bulge and arthritis. The thing that to me seems so obvious is that I have arthritis at the lumber regions and the cervical regions where the nerves come out which are exactly the nerves which serve the areas of my body that are having the highest degree of symptoms. The problem is that those symptoms overlap almost perfectly with IPN; numbness starting in the feet and moving to the hands. Sadly I do think I have ‘a neuropathy’ although I’m open to that diagnosis being revisited. However, I am going to look in to more research and with other docs regarding the back issues because of your narrative! Unlike your situation I have lots of numbness and pain that is ‘in line’ with the deterioration that happens with IPN. I have some pain but nothing like what you’ve described. My current thinking is that I probably have similar issues with the spine at different locations as you do but that I also have IPN. My guess is that I could manage the IPN way better if I weren’t struggling with the spine issues so much. Another big piece of the narrative of my back that the docs seem to be ignoring is that of my left leg and foot. I used to play indoor soccer and did this move that started to make my left foot go numb. It happened two or three times over the course of several months before I finally decided to end my 40 year soccer playing. The numbness went away and only resurfaced occasionally. Now however, although I have the IPN diagnosis which is supposed to be very symmetrical I have severe issues with my left foot. I can see that it’s really getting damaged. The toes are curling up ever so slightly because of the muscle and nerve weakness etc… This is another symptom the docs seem to be happy to ignore.

Jennifer, Your story is inspiring. I’m guessing you persevered through some very dark moments.

The following are just thoughts regarding other parts of our dialogue;

Idiopathic
I agree about the idiopathic diagnosis. Boy do we have to watch out for ourselves in the medical field!!
At my first visit to a neurologist and after the conduction study to test nerves in my legs he said I ‘have an idiopathic neuropathy and that it’s a condition that will get worse the speed and degree to which we don’t know and that he could send me to get many expensive tests but that they wouldn’t matter because none of the unknown neuropathies were conditions that could be helped in any way.’ Yikes. I told him ok don’t bother with the tests as that seems foolish to do. Later my regular doctor was reading his notes and asked me why I ‘refused further help!’ What? Astounding! He wrote that ‘patient refuses further assistance or treatments.’ This is something I never said and far closer to what he said. They’re essentially words he put in my head. Prayers to anyone who has been told this stuff and didn’t have the fight left in them to look further. Scary.

Idiopathic PN
I found Doctor Latov who seems pretty compassionate, highly knowledgeable and confident. He’s done some talks on idiopathic neuropathy that are great to listen to. He likes to refer to the term as idiotic pathetic. Basically what he means by that is it seems it’s a way to give up which shouldn’t be a part of this.

I don’t have another surgeon in mind. I guess I’ll begin more research on that now.

Thank you, thank you Jennifer. I’m deeply touched, helped and motivated by your help.
Darren