Alan had 2 nerve cond and 1 emg today!!
 

Well today was the end of the journey (as far as doctors go, I mean)

Alan had thought that the tingling between certain toes of each foot was an indication of nerve compression, then we both went on the internet and saw a procedure performed by a surgeon where he UNCOMPRESSED the strangled nerves. We contacted Alan's orthopedic surgeon, asked questions and Alan was referred to another neurologist.

Today was tha appointment. We were in his office from 3:30 to 7 p.m. That's how thorough he was.

At first a technician performed a nerve conduction study which was nothing that I have ever seen before. He made Alan grit his teeth, hold his arms up, and clasp his hands together and try and pull them apart. Doing this for one second intervals. Never saw this before.

A very thorough test.

Or so I thought. The neurologist walks in (he was going to do the EMG). He looks at the screen and does not like the way the nerve conduction test was performed SO HE DID HIS OWN. That's right, same procedure, same griting of the teeth, holding hands together.

Then he did an EMG. Then he did a complete neuro exam. I don't think Alan has had this kind of exam (well I don't believe he ever had had it).

The guy was THOROUGH!!

And he asked LOTS OF QUESTIONS about Alan's family background, his sister, our son, ALL KINDS OF QUESTIONS.

So at the end of it all, I really hoped the guy would turn to us and say

AHA!!! I know why Alan has neuropathy.

He did not say this.

He did say .....

"Alan does not have CIDP"

So I said "so ,are we back to Idiopathic once again?" and he nodded sadly.

I said "But there IS a cause, right?, but we don't know it, right"

And he said 'Exactly".

That's when I said the following:

"Okay, you don't know WHY he has this, but can't you do something about the pain, the tingling between the toes?" We had gone over that Alan had formerly used the fentanyl pain patch, the other stuff, and that it all made him ill, and I asked him the following (I've also asked this of other doctors but now at least I know why they all said "no, we can't do that".

I asked "Can't you just take an injection of lidocaine, or botox, OR WHATEVER can be used to numb the nerves that are causing the tingling?"

He just shook his head and said "no, it won't work". And I said "why not?" and he said something to the effect of that Alan's feet, well the nerves in his feet have died, or they are so badly damaged, that, well PAIN IS A GOOD THING, it's a sign that some of them have not died.

I said "I know that you think pain is a good thing, but to Alan, PAIN IS NOT A GOOD THING, isn't there an injection that will numb the nerves?"

He said that no, that in Alan's case, the nerves are so damaged, that the signals are misfiring (I really did try to remember everything the guy said but we are talking over 3 hours here and I want to get the facts correct.

He also said that there is no operation, no surgery, there are no compressed nerves in his feet, that he has very very bad peripheral neuropathy, that he's surprised that he walked as well as he could, that he should continue to walk, that it's good for him (even if he does have an ulcer), his ulcer was debrided last week and it looks good.

He looked at it and asked why they could not operate on the reason that Alan has the foot ulcer and I explained that the doctors don't like to operate on feet with as bad neuropathy as Alan and he nodded and said "right, because infection can lead to amputation.

So I again said "So what do you have for pain"? and he said "Well, Alan doesn't like the pain meds that are available", and I said "no, the pain meds don't like Alan". He shook his head sadly.

So this had to be the most thorough exam, and oh, I forgot. The doctor said

"Since Alan does not have CIDP, he should not be getting IVIG".

Alan is getting an infusion this Saturday. It will probably be his last I have no idea. I asked the doctor "Don't you have to be weaned off this stuff?" and the doctor said "No, nothing will happen".

Is there any truth to this.

Alan is doing it every 2 months now, and he said he has 2 more treatments to go. Can he just stop this infusion thing?

Anyway, I did try to remember everything that happened.

We came home, I made him a nice dinner and told him. "We are not done, you just continue to take as best care of yourself that you can, and I'll do the nutrition part of all of this". He laughed.

So that's all!!!!

Hope all are well.

Melody

Melody,

Did Alan have a Nerve conduction test of the spine?

This might be one cause of his neurothapy.

I know that he was hoping to find some answers about the pain he is experiencing. Did the Doctors mention any damage to the back?

Take Care.
BonDon

More specifically--
 

--in the process of doing the needle EMG/nerve conduction studies,did they do Alan's paraspinal musculature in the lower back?

This might point to disruption of signlas between the nerve roots and the nerves they serve that eventually go down the legs. (I just had one done for my weird leg/sacral/pudendal thing going on--all normal--and though it's not the most pleasant thing in the wrold, the discomfot is generally fleeting.)

As I've written before, I've always thought that Alan might have mutliple things going on--I still think that an autoimmune etiology for some of this is likely, given his other medical history, and that there may be "double crush" exacerbating the symptoms if there's any compression at all in his lower back or in his legs (speaking of which, does he have a recent lumbar MRI?).

Hi to both of you!!!

He has had a recent MRI of the back. He's had MANY mr's of the back. We went to the 4t back doctor about 2 months or so ago. He completely ruled out the fact that his neuropathy might be related to his back.

He said "I can tell you definitively!!! It's NOT his back"

And the neurologist yeaterday said "There is NO compression", his feet are (for want of a better word), disintegrating. He sat there and demonstrated that way way down the road (because this is a slow progressing neuropathy, the bones in his feet will simply go 'SPLAT. Because now he has no arch. The nerves in his feet are slowly dying. He said that when they die completely there will be no pain, and he didn't elaborate further. I can tell he was holding back for fear that Alan might get so depressed. (I saw this in his eyes).

The thing that struck me was that one of the last things he made Alan do was go into the corridor and walk back and forth and do stuff with his hands. I saw the look of amazement on the doc's face and he said "He walks pretty good". I could tell he was thinking "this guy can walk???" that well??"

Alan used to drink in his 20's. He used to black out. I never knew this because I met him at 32 and he had also given up smoking. So he smoke and he drank from his teens to whenever he stopped doing this.

I have no idea if this behavior contributed to his neuropathy and we'll never know. At present there is no test to definitely say "yup, THIS IS WHY HE HAS THIS".

Not gonna happen.

I also have no idea if they ever did a paraspinal musculature thing.

I know that last night he said to me "Melody, I can only imagine what it must be like to be electrocuted and I hope I never have that experience".

Also, we explained to the doctor that when Alan is upright, or walking, HE HAS NO TINGLING BETWEEN THE TOES. Only when he lies down, or sits down.

Now when you've told this to 11 doctors (give or take), and the final guy (who is the head neurologist at this hospital, and who MUST know his stuff, right?), because he is also a muscle specialist, well, you simply have to throw up your hands and say "well, the medical field is NOT going to be of service to us, we have to TAKE CARE OF THIS OURSELVES".

I shall continue to take care of him and myself. I am now using a product called Healthifeet and will follow instructions and massage it for 5 minutes twice a day. It's supposed to maintain good fot health.

Alan said to me last night "I guess I have to start looking at the scooter store"??? I said 'not on your life, you know what you have to do"

He said "yeah, I have to start exercising and move my body".

Years ago, when he was actively going to Dr. Theirl, and he went to the gym and did whatever weights he did at the gym, well, even though he still had the complete numb feet, he felt 100 times better. But then he got the foot ulcer.

So now it's all debrided and I rub vitamin E on the outside of it to keep the calluses from forming so hard.

I was told to do this by an physical therapist years ago, when he had had the operation on the muscle in his calf, so it would alleviate pressure on the foot ulcer. That operation failed, but he had to go to physical therapy. I would often go with him and it became a social event, and I watched the therapist do his thing on Alan's calf. He then said 'Melody come over here".

He showed me how to put Vitamin E over calluses and it would help break them down.

I am doing this faithfully.

We haven't gotten to the end of the road YET.

But what I really want to know is the following:

Can a person abruptly stop IVIG after being on it for 2 years. He is now getting it once every 8 weeks.

After this weekend, can he just stop? The neuro guy he saw yesterday is forwarding his results to his IVIG prescribing neurologist.

Can Alan call her up in a few weeks and say "this guy said I don't have CIDP, and I shouldn't be getting IVIG because it is NOT WITHOUT RISK (his words exactly)."

Can Alan then ask her if he can stop IVIG all together. Or (if any of you know), does he have to be weaned off.

We don't want him to go into any kind of shock or withdrawal. I have no clue about this and I get so many different anwers from various people.

Anyway, thanks for all your help and good info.

Melody

Glen:

Alan just asked me "Would Stem Cell therapy help me?" I said "let me go and see if there are any clinical trials done ANYWHERE in NYC".

Didn't have any luck in that department but what I found interesting (and I think I understood one percent of the whole article was that there is SOME interest IN SOME WAY TO BLOCK NGF.

From what I'm reading they are saying that using NGF can treat pain, or it can block pain (extremely confusing).

Anyway, since Methyl B-12 helped ME so much and I explained to Alan, that it's NOT A QUICK fix, but since there is NO MEDICAL help for him at the moment, he can try doing what I do, in the hopes that DOWN THE ROAD, his nerves might regenerate and stop misfiring. He did try the B-12 when I tried it but he stopped in 2 weeks because he saw NO results. I told him "it doesn't work that way".

Might we give this a try in his case? We really have nothing to lose.



So let me get back to that NGF article. Here's a segment from that article: What are your thoughts? (when you have a moment, lol)

"Given the neuroprotective versus algogenic effects of NGF, would NGF itself, or an anti-NGF strategy be of functional use in the treatment of neuropathic pain? The use of NGF itself as a treatment for neuropathic pain may be of benefit because of the pathological conditions associated with the injured nerves. Indeed, a number of studies have observed benefits of NGF treatment on neuropathic pain. However, there is also logic for trying to treat neuropathic pain by blocking the actions of NGF. This theory is justified by the rationale that uninjured fibers have an increased availability of NGF, because they are competing with fewer fibers for any target-derived supply. In addition, reactive Schwann cells in the damaged nerve begin to synthesize large amounts of NGF. Indeed, NGF overexpressing mice display a marked hypersensitivity to both mechanical and thermal stimuli after CCI, suggesting that excess NGF may enhance neuropathic pain behaviors (137). Several groups have therefore tested the use of anti-NGF treatment in models of neuropathic pain. Anti-NGF antibodies are able to delay the development of neuropathic pain behaviors after both CCI (138), and SNL (139). In addition, in a rodent model of spinal cord injury, in which neuropathic pain behaviors developed bilaterally, anti-NGF attenuated both mechanical hyperalgesia and enhanced neuronal responses in the spinal cord (140). Despite the apparent success of anti-NGF treatment observed by a number of groups, neuroprotective effects have been reported using other neurotrophic factors. For example, exogenous glial cell line-derived neurotrophic factor administration attenuates both ectopic neuronal firing and neuropathic pain behaviors after SNL (141). It is therefore feasible that a combination of anti-NGF with glial cell line-derived neurotrophic factor would have additional efficacy in the treatment of neuropathic pain.

Thanks much
Melody

Charcot's foot
 

I wonder.... did Alan ever have a B12 test?

I think 2 weeks is not enough time if someone has low B12.

Also, has he had his Vit D measured? Time is showing that this is a definite factor in pain perception and overall health.

I would think Alan doesn't get outside in the sun much.

hi there

Just an fyi, the gritting teeth and clenching and pulling hands is usually done to potentiate reflexes. It's the only way that the reflexes in my legs can be detected, so I automatically do that when I have my reflexes tested. I have to do both at once for them to find my reflexes.

I have not had it done during an emg, but I am guessing that they would do it to strengthen the nerve signal so they can measure it.

I asked if a nerve conduction study could be done on my back, and I was told that the nerves are too deep to be able to measure them that way. So, I think the only way to check for a compression is via the MRI, which it sounds like Alan has already had.

Great that you have found such a thorough doctor - and yes, I think you are right, there is a time to accept that the cause will likely not be found, and the only thing that can be done is to live well despite the disability.

cheers
raglet

No, he was indeed tested for charcot. He doesn't have it.

Alan NEVER goes in the sun, he's too fair.

And his B-12 was perfectly normal. He is NOT a diabetic either.

So tomorrow he starts the B-12 like I do.

We shall cross fingers and toes.

Melody

Well...Mel..... if Alan never goes out in the sun...his D would be very low. With all the tests and medical stuff he has had done,
this test may be the most important!

Have you watched the video...newly released based on the newest research?
http://www.youtube.com/watch?v=TQ-qekFoi-o

And BTW....you should get this evaluated as well!
Diabetics can benefit from the new research too.

Hi.

I just got out one of his blood tests (this blood test, tested for EVERYTHING).

His B-12 was 1252 (so I don't think that's his problem).

I'm checking on that youtube link.

Thanks much

Mel

Mrs. D.

I was in the middle of watching that Vitamin D video on youtube when the youtube link gave me an error message. I tried to go back and it's still giving me that message. I'll try again later.

I just asked Alan "What is your Vitamin D level" and he said "Dr. Fred would have ordered that when I get my blood test every three months".

He doesn't know his level. I have most of his blood work right in front of me and I can't find any Vitamin D. Level.

I actually have this one gigantic blood test that gives everything from Hemogram, Automated Differential, General Chemistry, etc. etc. Can't find his D level.

Does it just say Vitamin D level, or is it another terminology?

Thanks much

And be sure, when Alan goes for his blood test in about 2 weeks, WE WILL ASK FOR A VITAMIN D LEVEL.

Thanks much

Melody

Here is the testing information:

http://www.vitamindcouncil.org/healt...eficient.shtml

Here is another one explaining stuff:

http://www.naturalnews.com/027345_Vi...ure_blood.html

Melody,

I was reading an earlier post where you had mentioned an MRI of Allan's lumbar. Also, I noted Glenntaj's post here on this thread.

Just my two cents worth...

My feet will just kill me at times UNTIL I get bi-lateral facet injections (I noticed Allan's MRI noted facet hypertrophy along with issues at L3/L4/L5 and S1). I just has a bi-lateral facet rhizotomy not more than 3 weeks ago. My feet feel great!! And it is not just the steroid they injection because that would wear off in less than a year. And where I ache and burn strictly follows the L5/S1 dermatome. It is funny because I never feel pain in my legs. It seems to bypass them but sitting and driving will absolutely kill my back and my feet of all things!

And, I will just add, my EMG's are ALWAYS normal and I have had plenty. My Neurologist also tried to tell me it was strictly PN. But, honestly, I don't believe it. This is the 3rd time I have had an RF and each and every time I have it done my feet feel 100% better. It is just that the nerves regenerate in about a year and I have it done again.

Anyway, just a thought if nothing else works. But I tend to agree with Glenntaj and the other poster...look at the lumbar/sacral spine with a GOOD spinal pain management doctor.

Why would Alan need a good spinal pain management doctor? He has absolutely no back pain.

And he DID GET AN EPIDURAL injection YEARS AGO when we began our journey, and he went to various orthopedic back specialists (because he was certain that the PN might be coming from degenerative discs (or something). One spine guy (after all the mri's and such), said "Okay, let's try an epidural, maybe THAT WILL STOP THE PAIN IN YOUR FEET'.

Did absolutely nothing.

Oh, just wanted to add, in your post you mention that you ache and burn. ALAN HAS NONE OF THIS. No aching, no burning, Just severe tingling between certain toes. Only when he lies down or sits down. Not when he stands or walks. I asked the doctor and he said "when he uses various positions, the nerves fire differently. Alan's nerves are ALL DAMAGED"

I think he's done FOR NOW!! (with doctors I mean)

But thank you very much.

Okay, it was just a thought based on my own experiences. And what you had posted about his MRI. I really believe, as Glenntaj pointed out that some of this could be from his spine. Tingling IS a symptom of lower back issues and is something my spinal PM always asks...if I have any tingling ANYWHERE. Sometimes I can feel a buzzing or tingling in my left lower leg and ankle. Anyway, my one and only lumbar epidural didn't help either because it was determined eventually it was coming from the facets; mainly L5/S1 but the levels above are bad too. Anyway, just a thought...I hope Alan can find some relief.

Hi again.

Alan has been to NUMEROUS back specialists. They all took their own MRIs. They ALL came to the conclusion that Alan's tingling has absolutely nothing to do with his back. Now we are talking examinations, workups, x-rays, mri's, the WORKS.

He even went back to the same guy twice in two years because his neurologist said "I want you to go back to this guy, I want to make absolutely sure this has nothing to do with your back.

So we went (a few months ago), bringing the most recent mri of his lower back, (among all the other mri's and reports).

The guy sat with us and showed us WHY it could not be Alan's back that was causing the tingling. Don't ask me to repeat what he said because it was all Doctor Speak. but I do remember he said "I can categorically tell you, that Alan's foot problems have nothing whatsoever to do with his back.

So unless there is a Dr. House in my neighborhood who has some device from Star Trek that can scan Alan's body and show absolutely every blood vessel, nerve, .....etc. etc..(and I remember asking one of his ortho guys just such a question), and he looked at me and said "No, such a device does NOT exist". well, I guess we are just stuck in limbo.

Maybe in 2010?????

One never knows!!

lol
Melody

Hey, I've never had an abnormal nerve conduction test--
 

--or, for that matter, anything abnormal on a lumbar MRI. Nor do I have any lower back pain, and I am always negative on the provocative position tests used to show lumbar radiculopathy (nerve root compression)

The problem, though, is that these scans don't go down far enough.

I have a documented 2cm leg length discrepancy, left shorter than right, and it throws off my posture. One can actually see the hips are tilted when I stand. It is my theory that what this may be doing is causing both facet joint problems and/or problems in the SACRAL spine. The S2, S3, and S4 nerve levels all contribute to the sciatic nerve through the lumbosacral plexus, and therefore to sensation all the way down the legs to the feet.

Admittedly, too many doctors take the dermatomal charts literally, and think only L5/S1 levels are involved that low, but dermatomes have considerable overlap and individual differences. The trouble is often to try to get doctors to consider problems in that area. They think the sacral spine is an immovable object, unlikely to be malpositioned. But torquing forces in the pelvis, hypermobility of the sacroiliac joint. etc., can certainly change its position enough to possible impact nerves that go through it.

It's certainly possible this has nothing to do with Alan's sensations, but it may be worth imaging of the area to make sure (and no just through simple X-ray, either).

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.

Kathi pretty much explained what I was saying--
 

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

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. :o

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