Doctors can be mistaken. After all what you get from them is only an "opinion".

PN typically, over time spreads and involves other parts of the body. Mostly the hands. But anywhere sensory nerves are, there can be effects. Postherpetic neuralgia is a good example.

So if Alan NEVER has symptoms somewhere else, after all these years, one would still think-- the back/sacrum or spine.
Whether this is "fixable" remains in the doctors' domain.

Get that Vit D test. See what happens when you fix any deficiency there!

I don't consider myself serious now with PN, like I used to be.
But I have it in my hands AND feet and always have.
All the causes of PN affect the body globally... not just the feet.

I'd also be interested to see how that foot cream works for him.
The arginine in it.... so keep me posted on that.

yup, get him back to the gym, if he can find a Pilates instructor to work with it may well be beneficial......and as far as the sun goes, we are talking 15/20 minutes a day at full sun.....with a fair amount of skin exposed.....not enough to burn.....but up here in our latitude, supplementation is really necessary.....B12 is prob. not his problem, but that test is open to faulty results.....good luck

Glenn:

Translate what you wrote into a paragraph that I can bring to his neuro on the next appointment (or Dr. Fred for that matter because he's going there soon).

Exactly what kind of imaging thing SPECIFICALLY, should be scanned.
We'll bring this to the doctor and request it.

thanks VERY much.

Oh, and Glenn: You wrote the following:

"I have a documented 2cm leg length discrepancy, left shorter than right, and it throws off my posture. "

Why wouldn't a specially prepared left shoe, that has an inch or more height added to it, well, wouldn't that make your legs even, and then reallign your body (or whatever point I'm trying to make)??????

Melody

Melody,

What I believe Glenn is saying (and I should let Glenn speak for himself) is that the MRI's of the lumbar spine do not cover the sacrum or coccyx. I am only adding this because I had to have 3 different MRI's done at once. He is right; they can't catch it all on one MRI. Xrays just won't show the soft tissue or rather nerve impingement. I would also ask for them with and without contrast.

And I sort of went through this very same thing Glenn is speaking of. It took my spinal PM and Urogyn to sort the whole mess out. But I thank God my own spinal PM was not one of those who thought, as Glenn states, that the sacrum is immoveable. And, then followed the nerve blocks and very specialized PT which is too graphic to go into here; suffice to say it worked!

Anyway, I believe Glenn is correct when he says this may or may not be Alan's problem. But again, I was basing what I said from reading your post about Alan's previous MRI and I tend to agree.

And one more thing. I really like my own Neurologist but she has been wrong on occasion. It is possible as Glenn states that I do have idiopathic small fiber PN. But it is very, very odd that every time I get facet injections in various areas, an RF or even a block of the ganglion impar my feet improve tremendously. So, again...just my thoughts since really, every test I have ever had excluding a punch biopsy showed nothing.

--but everyone knows I'll chime in anyway.

Too many orthopedic specialists and other doctors read the gospel about how 95% of the time sciatic nerve distribution problems are traceable to radiculopathy at the L5 or S1 nerve root levels, so they don't think to look lower.

But in the lumbosacral plexus, the sciatic nerve (and others) has contributed communicating fibers from many levels, including lower ones such as the S2 and S3 nerve roots. But a standard lumbar MRI only images down to about the S1 level, and since the the S2, S3 and S4 nerve root areas come through the sacrum, the triangular bony area that is held between the iliac hip crests, they are not imaged. AND, since the sacrum is a fused, fixed bone that is held rigidly (in "normal" people) to the pelvis at the sacroiliac joint, and doctors have been taught it rarely has problems, they don't think to look there, and often dismiss the possibility even if you mention it.

But there are certainly cases of sacroiliac joint dysfunction, in which the sacrum has more "play" and move more than it should, and this can lead to nerve impingment. One would think that docs would be more open to examining this in cases of traumatic injury, such as motor vehicle accident, but I've found even then they're hard to persuade ("that joint is the strongest in the body", etc.). It takes an open-minded doc to have that lower area MRI-ed. Many will take plain X-rays to look at the hip joints, but few will look directly at the sacroiliac joint area and the sacrum specifically.

(Sorry this isn't one paragraph, Mel--but you might want to print out the whole discussion, as well as some of the articles about sacroiliac joint dysfunction on our Spinal board.)

And, yes, Mel, with my leg length discrepancy, I've thought about a lift for the left shoe. I've tried a few of the commercially available ones that slip inside shoes, but they don't seem to help much, and they slip around a lot. It may well be that I will have to have one specially made--or have shoes specially made (that gets really expensive, since you can't really have it done for only one pair).

Fortunately, I have now found a physical therapy practice which seems to be sympathetic to the idea of sacral problems secondary to malrotation/malpositioning and is working with me in that area--myofascial release, nerve gliding, etc. They can clearly see my hips are not exactly even, and that when I lie down my legs are not even. (It "feels" as if my left leg has been "shoved up" into my hip joint and rotated about 10 degrees to the left. I don't remember a specific traumatic event, but I have done lots of running and basketball playing over the years.)

In any case, it takes an open minded doc to really look into that area--perhaps a physiatrist or more osteopathic person. But any condition that is altered significantly with different positions cries out for that sort of structural analysis.

Glennaj: (and thanks to everyone else who responded).

I am printing out your post and hopefully Alan will bring it to his doctor (who may or may not do ANYTHING).

Thanks much

Melody

So Kathi:

Am I to understand that when Alan goes to Dr. Fred (later on this month), and he brings these two print outs (of this topic), that we ask Dr. Fred

"We need an ortho guy who will do MRI's of Alan's Sacrum and coccyx.

Is this right?

Also, and this is a good piece of info

When I first married Alan, he used to drive his car every day and he broke every driver's seat of every car he had.

EVERY ONE!!!

They all were tilted to the left. They NEVER WERE IN THE ORIGINAL POSITION. You know what I mean? When a driver gets into his car, and buckles up, well Alan's seat was broken because he was a 300 lb man and he would move the seat constantly.

I used to say "how the heck can you drive a seat like this?" and he would ALWAYS SAY 'I'm used to it'.

Every single seat wound up looking the same way.

He quit driving about 8 years ago because he couldn't feel the pedals.

If we find a person to do these MRIs, and somebody says "ah, sacrum and stuff, now we know, well, if they do this, and Alan does PT, does this mean, he will get the feeling back in his feet, and the tingling will go away??

This seems UNLIKELY.

Melody

Melody,

First I want to say thanks to Glenn...he did an excellent job of explaining. I am just sorry I butted in.

Secondly, I am laughing about Alan and the car seat. Please know I am laughing WITH you...I have the same problem! The only difference is my car seat does not tilt to the left and, not to be rude or anything, but I am not overweight. I think what happens is that of course I am using my right foot to drive so I probably LEAN to the left a little more and even when I use my coccyx cushion.

Okay, I would simply ask the Ortho doc about the MRI you had posted and MENTION the L5/S1 (lumbar/sacrum). It would be up to the doc of course if he wanted to proceed with this. The reason my spinal PM did all 3 is because during an injection of the L5/S1 I guess he could see my tailbone. He asked me when I had broken it. I was like...WHAT???!! And he showed me right there on the flouroscopy machine the two places where it had been fractured. Long story but I am totally clueless as to how that happened. In the interim I was having pelvic pain and of course my feet burned and hurt like the devil. I also had a feeling of a cell phone vibrating in my feet and my left leg. So, you just have to know that everything from the waist down has gone kaput! Anyway, he wanted to see where all the OA was PLUS if there was any nerve issues further down...as Glenn is speaking of and there is. My coccyx too.

Anyway, don't let the doc dismiss it away. Based on the MRI you posted for Alan there are issues. Maybe the doc is just saying it isn't bad enough for surgery I don't know. But I wanted to ask...is this ortho doc a spine specialist? There are OS's and then there are OSS's. And don't let the Neurologists dismiss it either. This is one reason I stick with my SPINAL pain management doctor. As he says, the neurologists know the nerves but they do not really know the spinal nerves. Honestly, I am finding that to be somewhat true. Boy, that didn't sound very nice. What I mean is...my own Neurologist is good but honestly she is kind of clueless when speaking to her about the spinal issues I have. So, I would just print off what Glenn had to say because, speaking strictly for myself, those facets are just killers. All summer long I was in agony with burning and bad pain my feet. But I should add I also had sinus tarsitis in my left foot. And a shot of cortisone took care of that problem fairly quick.

It is just odd to me that bi-lateral facet injections and an subsequent RF did and does the trick....but it does come back when the medial branch nerves regenerate.

Okay, back to Alan and the nerves. I don't know if it would ever go away. I think it depends on what the problem is at whatever level. That's why these injections are DIAGNOSTIC as well as therapeutic. Sometimes they work great and provide great relief and for others they just don't help.

So, the best advice I could give is just to ask the doc again and tell him what we have said here. I know when I asked my PM recently if there was anything else we could do about my own facets. He basically said no....it would be a fusion which is what he is trying to keep me from for the time being. On the other hand, there's my husband with a huge herniation but it has the potential to dry up and go away with time; taking the pressure off of the nerve roots. But that's not true of the facets which is why I keep getting the medial branch nerves ablated. And, well, as I sit here and type there is no back pain and definitely no burning, tingling or pain in my feet.

Well, I rambled enough, I think what Glenn and I are saying...is just don't rule out those sacral nerves. Oh, and oops, another question. Does Alan ever have the feeling of walking on marbles or something similar. I had that too and it was driving me crazy. It didn't hurt it was just annoying like I had marbles in my shoes. But that feeling is gone now too.

Hi.

And don't for a minute think you are butting in. You keep sharing your info. It's IMPORTANT.

For example, the marble question.

Just asked Alan. NO MARBLES.

lol.

And guess what? His medicare HMO denied payment for his orthotics, (we appealed, and we lost, and now it's up in front of some big Kahuna appeal board). Their reason. "he's not a diabetic, and his shoe does not come with a brace".

NOTE THAT I SAID THEY WON'T PAY FOR THE ORTHOTICS. These are INSIDE his shoes right?

THEY PAID FOR THE SHOES.

They are NOT paying for the orthotics.

I had a chat with the lady at the orthotic company who said the following:

"you think THIS IS STRANGE??? I've heard of insurance companies paying for PART OF A BRACE BUT NOT THE WHOLE BRACE, and the best one yet was

They paid for one hip replacement but not the other.

But the best was from my 82 year aunt who lives in upstate New York, and is going deaf.

Her insurance company won't pay for a hearing aid.

Why??

THEY SAID IT'S COSMETIC!!!

jeez!!!

Melody