Living in limbo

[fortitudine]

I am what Mark calls an"outlier" - not typical of spine patients. He asked me to post my latest findings, just to prove that there are no right answers!

Five years ago, I was diagnosed with moderate to severe cord compression at c3/4/5 and DDD everywhere. I was advised to have surgery immediately by several NS. However, the slight symptoms I had disappeared. My own local NS eventually agreed that there was no urgency, a good thing as he proposed a very drastic preventive multi-level fusion.

However I had meanwhile found Mark and Dr. Bertagnoli who advised that surgery was probably a good idea and recommended a much less invasive surgery. Various circumstances forced me to postpone the surgery with him several times over a 2 year period. As I was feeling 100 percent I asked if perhaps I might avoid surgery for a while and was given a cautious green light to "watchfully wait".

I just had an update from Dr.B./F.M. who advised that while there did not appear to be any progression on my latest MRI, the degeneration is usually progressive - i.e. at some point I will have to bite the bullet. In the meantime, I should continue having an annual MRI and sending it to them to review.

I'm physically active and haven't changed my lifestyle at all. So - here I am, watchfully waiting and spending a lot of time in denial!

[sahuaro]

Puzzling but wonderful, Fortitudine. What tipped the balance for me were changes in my EMG and subtle but increasing weakness in my arm, rather than visible MRI changes. So I hope that you will have follow-up neuro evals as well as annual MRI's. With luck, you won't have to bite the bullet for many more years if ever!

[Cindylou]

fortitudine,

I'm showing my ignorance here, but I still don't understand what "outlier" means. If you were having no symptoms, what lead you to a doctor 5 years ago to begin with? If I had no symptoms, I would be skipping the lights fantastic, no matter what the MRI or Cat Scan were showing, so you must have had some "symptoms" to even be given a "diagnosis." Are you following me? It's late. I'm tired, granted. So forgive me not understanding this. But, I would be lassoing the moon if I had no symptoms, irregardless what the MRI/Cat Scan revealed. What am I missing here? Unless I were shitting myself or peeing myself, who gives a ripping, roaring f___ what the tests show? Forgive my french!

Cindylou

[Terry Allen Blackburn]

An outlier is someone who falls outside of the norm of what the tests or procedures would normally dictate as a usual course of action. It is on the outside, of a bell curve, in a normal statistical variance.

I hope that is as clear as mud.

I hope this continues for you where you are a continual outlier.

Terry Newton

[Cindylou]

Thank-you Terry!

Cindylou

[dshobbies]

I'm envious. I only wish my symptoms hadn't become severe. I think I would have been content to live with limited pain/disability but my symptoms were quite definitive.

Knowing what I know now, I'd put off surgery as long as possible/probable.

Good going!

[ImpOssibleOne]

Good post. Just goes to show that you can have a totally wretched looking MRI and be pain free. My husband got a freebie once because he knew some people where I was having mine done and his results were incredible. His discs were dessicated, bulging,impinging on this and that...just all over the place bad....yet he's totally pain free.

I suppose more importantly it shows that MRI's are only so useful in diagnosing the pain culprit.

[fortitudine]

I went to my doc with some minor issues - a bit of numbness on the side of my thumb, a bit of a sore neck/shoulder, plus a bit of tightness in my hamstrings which was bothering me when I walked. I was sent for an MRI and voila. There was some edema in the cord which may have induced the symptoms. They mostly resolved. I don't know why. I have now had at least 6 MRIs and depending on who reads them the signs are more or less significant.

I still sometimes have some muscle pain in my shoulder and occasional twitches in muscles but otherwise am 100 percent. Lots of crepitus.

Sahuaro I'm curious about subtle weakening. How would I tell?

[mmglobal]

This is a very interesting case. I've had dozens of conversations with many different neurologists and surgeons. There is clear cord compression and associated changes to the myelon. Some surgeons look at it and are certain that surgery should be done to minimize risk. We hear things like, "if you get in a fender bender or slip and fall, you may be paralyzed." Others say, with no symptoms, why do surgery? Everyone seems to agree that if neuro symptoms are advancing, surgery post-haste in indicated. One thing I know for certain is that there is no one size fits all in spine. Nobody knows the best path. Nobody knows the timeline.

If she were to have surgery and it makes her worse, she'd never know how many years she could have continued with little or no symptoms.

If she waits and is ultimately left with neuro issues related to the spinal cord compression, she'll never know if doing the surgery earlier would have made a difference in the outcome.

If she waits and has surgery at the onset of advancing symptoms and has a great outcome, then she'll know that she chose the best path in her individual case.

I hope that she gets to wait, then never needs surgery!

I'm not sure which path I'd choose. I'm waiting for my surgery, but I do NOT have spinal cord compression like she does... I get to make the quality of life decision without worrying about myelomalacia and permanent spinal cord damage. (He said as he is waiting for NEW cervical MRI... last one almost 1.5 years ago.)

Interesting discussion... interesting case... hits close to home for many of us.

Mark