Getting a diagnosis
 

Hi all.

I feel somewhat frustrated. I am new here as some of you already know & have responded to my various posts. For that I say thank you.

A lot of my issues that I have posted dealt with cervical issues; nerve damage as diagnosed by an EMG; and peripheral neuropathy.

Also I have Harrington Rods from about C3 to about T3/4 levels and Harrington Rods from L2 down to the iliac crest area.

Until recently I could not have an MRI due to a Spinal Cord Stimulator implant. But since it didn't work, the stimulator was removed.

I was always told that an MRI gave better readings then a CT scan. But I am having some difficulty with getting a reading using the MRI.

In the cervical area, even though I have the Harrington Rods, they were at least able to get some readings on what the problems were in my neck.

But the issue that I have is in the lumbar area. When I had the Lumbar MRI, due to the Harrington Rods they were unable to read anything. Apparently the rods caused an obstruction, thus unable to really put their hands on what is going on in the lumbar area. I do have low back pain, trouble sitting; probably stenosis from prior readings. There is extreme numbness in my left leg. Not sure it is all casued by the neuropathy and the nerve damage. Is there something else going on and to what extent?

Now the problem that I am having is first I was born with 1 kidney. Secondly, on the kidney that I do have I am in kidney failure/disease. Thus I have been told that the use of "contrast" on me can be extremely dangerous to the one kidney i have. There are ways around this in that there is a medication that I can take which act somewhat as a protection to the kidney. But there are no guarentees. My neurosurgeon is absolutely against doing an MRI With Contrast due to risk factors.

So I feel stuck. I am not aware of any options left on diagnostic testing to get further information on what is going on in the lumbar area.

Any suggestions? I feel I need to continue to explore my options. I don't want to give up hope on finding out what is going on.

Please help with any suggestions.

Thanks again for listening.


Allan

Hi Allan,

Something like this happens with PN patients quite often, and in a way, it has to do with the stages of grief, which can apply to any traumatic life-altering events -- not just death.

Many people (maybe even most -- I went through it) feel compelled -- driven -- to find a cause/reason for their PN, and will expend vast amounts of time and resources on testing in order to find one. Sometimes finding one does matter, but often -- maybe even more often -- if they even do find a cause/reason, they find that it makes little/no difference; the treatment is still palliative -- the same as it would have been had they not expended all the time, energy, resources, and wear & tear (stress) on their systems.

I guess a pertinent question to ask might be, will finding out what's going on in your lumbar area matter, or make any difference in treatment or in the long run? Finding the answer to that may help you figure out what to do next.

I don't think it's giving up hope; I see it as being pragmatic. I still have no idea what's causing my PN, or why my spine is that of a man 50 years older than myself, or why I have IBS, or why a lot of other things... The stress of wondering and trying to find answers was killing me, and in the end, I am where I am, I have what I have, and I have to deal with the present situation and go forward from here. Treatment options for all are extremely limited -- palliative and maintenance for the most part. I just can't dwell/stress on it any further; I have to get on with whatever life I still have left ahead of me and find whatever joy I can.

All this may not help. I do hope that it at least provides something to consider/think about.

Doc

There are times I sit back and think I will never have answers on a lot of things as to what is going on or why it is occurring.

But then I go thru stages of this need to know, need to find an answer. Thinking it's a matter of making the right connection with the right doctor to put all the pieces of the puzzle together.

Yes at times it consumes me and takes it toll on my physically and emotionally. I guess it's in my nature to try and find the answer. Unfortunately we don't always get the answers we want.

It may be, but then what? Finding/knowing a cause doesn't necessarily lead to a cure. If it does, then great. If not, is the frustration any less -- or more?

Believe it or don't, these are sometimes the kinds of discussions I have with my PCP.

"The art of medicine consists in amusing the patient while nature cures the disease." ~ Voltaire

OTOH,
"A witty saying proves nothing." ~ Also Voltaire

Doc

Allan
 

As far as finding out what caused PN; like Doc said...it really does not matter in most cases because it usually comes down to treating the pain no matter what the cause.

As far as the lumbar pain; that is something different. You may have spinal stenosis or problems with the vertebrae, discs, etc. Unfortunately, metal does not allow for having MRI's. I have had spinal surgery/fusion and have rods and screws in the L4-5 lumbar area, as well as surgery to remove some of the laminia covering the spinal cord due to narrowing. The laminectomy was done where the space had been most narrowed. I still have stenosis in other areas. Only the worst area was addressed with the surgery. Unfortunately, no more MRI's can be done because of the metal. You may want to get a 2nd opinion with an orthopaedic surgeon specializing in issues of the spine. I would think there are other ways to determine what is going on in the lumbar area.



Gerry

For me the issue was NOT what was causing the PN. I was wondering what was going on in the lumbar area. I know that when an MRI was done and we could get somewhat of a Dx that there was spinal stenosis. Now with the rods we can't get a clear picture. Has the stenosis progressed over the years? Is there other issues now occurring? That was my concern on getting a reading or not.

The subject did come up of removing the Harrington Rods so that we could see what was going on. But my neurosurgeon and one other doctor, can't remember which one said removing the rods was not an option. It was way to risky to remove the rods. There was a risk of paralysis in going this route. So that option was automatically illiminated.

Maybe there are no answers. But I guess it's human nature in wanted to know what is going on. I don't like accepting that there may be no answer, but I may have to face reality that it is what it is.

Allan
 

I don't blame you for wanting answers regarding the lumbar area. Not sure what can be done; but it seems almost impossible there is no way to find out what is going on. I'm not in favor of surgery; but the problem can be with the discs, stenosis and if there is any way to stop or limit the progression sounds quite reasonable to want to do all you can to find out what is going on.

Gerry

Yes, I realize that. I was just using PN as an analogy for any condition for which treatment options might not vary much regardless of cause, so pursuing a lot of testing might not make much difference.

The way I understand the situation, you can't get an MRI because of the Harrington Rods. They cannot remove the rods, nor do they even want to attempt further surgery (as I understand you) because the risk is too great. (The only exception might be a life-threatening condition/situation.) Maybe I got that wrong or missed something(?)

Ger remarks
If there are, I'm not aware of any. This doesn't necessarily mean a lot because I'm not a doctor. I really hope I'm wrong, but it appears the doctors are stymied as well.

That's what I was trying to get across. I feel the same way about my own spine, and I won't go in to the ten year quest I undertook to find a cause/reason for my chronic cervicogenic/migraine headache complex and where that led (or rather didn't lead).

Actually, I still do look for causes for some of these things, including my PN. The difference from some people is that I don't obsess/stress over it like I've noticed some people do. One thing I've learned from my own journey is that stress(ing) never accomplishes anything, and can be very detrimental. From your posts, I construed that you were (understandably) stressed. Maybe I interpreted that wrong too.

Doc

You can still have the MRI -- just WITHOUT the contrast material. You'll still get an image, and it will be readable. I'm sure they can tell you something!

But like Dr. Smith said, regardless of what they tell you, the ending will probably be the same. You won't be able to do anything about it besides medicate it. :confused: It's like me -- I've been deemed "inoperable" due to my osteoporosis, so whatever happens from here on out, makes no difference. i don't know WHY my doc keeps making me have MRI's. What's the point?? :confused: Maybe he wants to cover his own *****, I don't know. LOL But it costs the insurance company a lot of money, and for what?

Anyway, like I said, why not just have an MRI without contrast? Hugs, Lee

I did have an MRI of the lumbar spine. And NO they weren't able to diagnose anything because of the obstruction from the rods.

It's strange though that I had a cervical MRI and have rods there too. But in the cervical area they were able to get a reading.

So for some uknown reason they COULD NOT get a diagnosis. My question was knowing that I did have stenoiss now that they cant get a reading has the stenosis spread and if so is that causing a problem> And who knows without the reading if anything can or cant be done. Thats what bothers me.

Maybe I should give up the idea of knowing, but theres still that part of me that wants an answer.