[MelodyL]

Well, this is an interesting turn of events. I am going to tell you all the whole story and you can come and give me all of your suggestions and comments.

Some time ago, (over 2 years), Alan had a lumbar puncture (ordered by his neuro), and they found protein in his spinal fluid and he ultimately was diagnosed with CIDP (Chronic Inflammatory Demylinating Polyneuropathy) BIG WORDS!!!

His mom had been diagnosed with Guillian Barre when she was 53 years old and died from Cardiac problems when Alan was about 25 years old. He is now 62 (in June).

All during this Idiopathic Peripheral Neuropathy process (which was his original diagnosis over the past 18 years), we often said "Maybe it has something to do with his back (the neuropathy I mean).

Alan has never been the type to say: 'Oh my aching back, I can't stand up, etc. " Never. Nothing like that.

But his neuropathy is between certain toes of each foot. And he gets the burning in the feet when he sits down. NOT WHEN HE STANDS UP OR WALKS. His feet are also completely numb. He had small fiber neuropathy.

So he's had the routine emg's over the years, and the neuro work ups, and when his neuro said "I am giving you the diagnosis of CIDP because of the protein in your spinal fluid, and the IVIG might be beneficial to you."

So he's been undergoing infusions for about 2 years now. He is getting them every 5 weeks.

So yesterday, his neuro went over the MRI that was taken in December. She said "I don't think you have CIDP, I think your neuropathy stems from something in your spine, and I want you to see the back guy again".

He saw the back guy last year (he's seen more than one, but from previous MRI's they never said "oh, here's something, we can do this to help your neuropathy, blah blah". No one had ever said that.

So yesterday she must have seen something because she vehemently told him "Go and make an appointment with the back surgeon and make him see THIS LATEST MRI".

I have the report in front of me, and I'll include some of the findings in this posting.

There are TOO MANY FINDINGS TO BE TYPED HERE. There's mention of (at L3-L4 moderate posterior disc osteophyte complex and hypertrophic changes of the articular facets and the ligamentum flavum resulting in moderate narrowing of the spinal canal without evidence for compression of the roots of the cauda equina. There is bilateral moderate narrowing o the neural foramina, more pronounced on the right.

At L4-L5 there is marked flattening of the disc (and more words including hypertrophy, resulting in moderate narrowing of the spinal canal.

At L5-S1 there is a mild posterior disc osteophyte complex. No significant narrowing of the spinal canal is present. There is bilateral narrowing o the neural foramina, marked on the right and moderate to marked on the left.

NOW HERE IS WHAT GOT MY ATTENTION!!!

A signal abnormality within L4 vertebral body is compatible with the a hemangioma. (This is exactly how the report was typed).

continuing....."Endplate degenerative changes are sen in multiple levels.

The visualized portion of the spinal cord is unremarkable.

Impression:

Multilevel degenerative disc disease resulting in stenosis of the spinal canal and neural foramina.

More pronounced stenosis of the spinal canal it is seen at L3-L4 and L4-L5, without evidence for compression on the roots of the cauda equina.

Severe narrowing of the neural foramina is seen in on the right at L5-S1. Moderate to severe narrowing is seen on the left at L5-S1 and bilaterally at L4-L5.

-----------------------------------------------------------
When I saw the words hemangioma and vertebral body, I immediately looked it up and I googled Spinal hemangiomas, and a whole bunch of info came up including treatment with radiotherapy (which is radiation therapy).

It also states that hemangiomas can lead to benign tumors.

Alan doesn't understand any of this and I don't want to run this by him because I'm not sure of what I'm reading here.

Oh by the way, Alan has 100's of cherry marks all over his body. Aren't these types of hemangiomas. His sister has this also.

So from what I've described here, do you think this hemangioma is causing a pressing on a nerve and causing his PN?

I really don't understand any of this.

What I do understand is that his neuro does not believe he has CIDP, and that she thinks the PN is directly related to his spine, and that she wants the back surgeon to take another look at him. She said "you don' have Large Fiber neuropathy". and he said "oh you mean my motor nerves", and she said "yes, exactly, you have small fiber neuropathy" He has no motor problems by the way, no drop foot, etc. Nothing of that nature.

Alan would never go for any type of invasive surgery. He said to me yesterday. Maybe there is a new non-invasive procedure so they can go in my back, stop the nerve pinching, and there would be blood flow to my feet, and the PN pain would stop????

I have no clue. And believe me, we've been to doctor upon doctor over the past 18 years. They always said "idiopathic PN".

So it's now back to being Idiopathic PN, and he'll be weaned off of IVIG very slowly. She thinks his balance is fine, and there has been no significant difference since he has been on the IVIG.

I thought the IVIG would take the pain away and his neuro said "well, it might, but that's not the norm, IVIG is for the immune system".

So again, we are back to his having a diagnosis of IDIOPATHIC PERIPHERAL NEUROPATHY.

Oh, as far as the foot ulcer is concerned, (he has some kind of bone problem underneath his foot, which necessitates his getting special shoes once a year. He is now due for a new pair.

His foot ulcer acted up last week, the podiatrist debrided it. he healed quite nicely but he has to wear the crow boot, until they make him a new pair of special molded shoes which will take into consideration, his foot ulcer, his bunions, etc.

So when he goes out, he wears the CROW boot and when in the house, well, he doesn't walk around that much. His debrided foot ulcer healed nicely, but then again, it always does. UNTIL HE WALKS ON IT FOR SOME TIME, then it gets all thick and callously.

His neuro told him yesterday. I want to know WHY YOU HAVE THIS BONE THING GOING ON IN YOUR FOOT. So I gather we are back to square one on this foot ulcer thing too!! We have no idea why he has the bone thing going on in his foot.

Alan is not the type of guy to pin down his orthopedist and ask "Why exactly do I have this bone thing going on on the botton my foot, which causes me to have a foot ulcer".

I probably asked that question a long time ago when he first got the ulcer, but I'll be darned if I can remember what I was told.

Too many doctors, neuros, etc. etc.

Oh brother!!!

So I'll update you all when he sees the back guy. and I'll tell you what the back guy says.

melody

[Hope15]

Originally Posted by MelodyL

Well, this is an interesting turn of events. I am going to tell you all the whole story and you can come and give me all of your suggestions and comments.

Some time ago, (over 2 years), Alan had a lumbar puncture (ordered by his neuro), and they found protein in his spinal fluid and he ultimately was diagnosed with CIDP (Chronic Inflammatory Demylinating Polyneuropathy) BIG WORDS!!!

His mom had been diagnosed with Guillian Barre when she was 53 years old and died from Cardiac problems when Alan was about 25 years old. He is now 62 (in June).

All during this Idiopathic Peripheral Neuropathy process (which was his original diagnosis over the past 18 years), we often said "Maybe it has something to do with his back (the neuropathy I mean).

Alan has never been the type to say: 'Oh my aching back, I can't stand up, etc. " Never. Nothing like that.

But his neuropathy is between certain toes of each foot. And he gets the burning in the feet when he sits down. NOT WHEN HE STANDS UP OR WALKS. His feet are also completely numb. He had small fiber neuropathy.

So he's had the routine emg's over the years, and the neuro work ups, and when his neuro said "I am giving you the diagnosis of CIDP because of the protein in your spinal fluid, and the IVIG might be beneficial to you."

So he's been undergoing infusions for about 2 years now. He is getting them every 5 weeks.

So yesterday, his neuro went over the MRI that was taken in December. She said "I don't think you have CIDP, I think your neuropathy stems from something in your spine, and I want you to see the back guy again".

He saw the back guy last year (he's seen more than one, but from previous MRI's they never said "oh, here's something, we can do this to help your neuropathy, blah blah". No one had ever said that.

So yesterday she must have seen something because she vehemently told him "Go and make an appointment with the back surgeon and make him see THIS LATEST MRI".

I have the report in front of me, and I'll include some of the findings in this posting.

There are TOO MANY FINDINGS TO BE TYPED HERE. There's mention of (at L3-L4 moderate posterior disc osteophyte complex and hypertrophic changes of the articular facets and the ligamentum flavum resulting in moderate narrowing of the spinal canal without evidence for compression of the roots of the cauda equina. There is bilateral moderate narrowing o the neural foramina, more pronounced on the right.

At L4-L5 there is marked flattening of the disc (and more words including hypertrophy, resulting in moderate narrowing of the spinal canal.

At L5-S1 there is a mild posterior disc osteophyte complex. No significant narrowing of the spinal canal is present. There is bilateral narrowing o the neural foramina, marked on the right and moderate to marked on the left.

NOW HERE IS WHAT GOT MY ATTENTION!!!

A signal abnormality within L4 vertebral body is compatible with the a hemangioma. (This is exactly how the report was typed).

continuing....."Endplate degenerative changes are sen in multiple levels.

The visualized portion of the spinal cord is unremarkable.

Impression:

Multilevel degenerative disc disease resulting in stenosis of the spinal canal and neural foramina.

More pronounced stenosis of the spinal canal it is seen at L3-L4 and L4-L5, without evidence for compression on the roots of the cauda equina.

Severe narrowing of the neural foramina is seen in on the right at L5-S1. Moderate to severe narrowing is seen on the left at L5-S1 and bilaterally at L4-L5.

-----------------------------------------------------------
When I saw the words hemangioma and vertebral body, I immediately looked it up and I googled Spinal hemangiomas, and a whole bunch of info came up including treatment with radiotherapy (which is radiation therapy).

It also states that hemangiomas can lead to benign tumors.

Alan doesn't understand any of this and I don't want to run this by him because I'm not sure of what I'm reading here.

Oh by the way, Alan has 100's of cherry marks all over his body. Aren't these types of hemangiomas. His sister has this also.

So from what I've described here, do you think this hemangioma is causing a pressing on a nerve and causing his PN?

I really don't understand any of this.

What I do understand is that his neuro does not believe he has CIDP, and that she thinks the PN is directly related to his spine, and that she wants the back surgeon to take another look at him. She said "you don' have Large Fiber neuropathy". and he said "oh you mean my motor nerves", and she said "yes, exactly, you have small fiber neuropathy" He has no motor problems by the way, no drop foot, etc. Nothing of that nature.

Alan would never go for any type of invasive surgery. He said to me yesterday. Maybe there is a new non-invasive procedure so they can go in my back, stop the nerve pinching, and there would be blood flow to my feet, and the PN pain would stop????

I have no clue. And believe me, we've been to doctor upon doctor over the past 18 years. They always said "idiopathic PN".

So it's now back to being Idiopathic PN, and he'll be weaned off of IVIG very slowly. She thinks his balance is fine, and there has been no significant difference since he has been on the IVIG.

I thought the IVIG would take the pain away and his neuro said "well, it might, but that's not the norm, IVIG is for the immune system".

So again, we are back to his having a diagnosis of IDIOPATHIC PERIPHERAL NEUROPATHY.

Oh, as far as the foot ulcer is concerned, (he has some kind of bone problem underneath his foot, which necessitates his getting special shoes once a year. He is now due for a new pair.

His foot ulcer acted up last week, the podiatrist debrided it. he healed quite nicely but he has to wear the crow boot, until they make him a new pair of special molded shoes which will take into consideration, his foot ulcer, his bunions, etc.

So when he goes out, he wears the CROW boot and when in the house, well, he doesn't walk around that much. His debrided foot ulcer healed nicely, but then again, it always does. UNTIL HE WALKS ON IT FOR SOME TIME, then it gets all thick and callously.

His neuro told him yesterday. I want to know WHY YOU HAVE THIS BONE THING GOING ON IN YOUR FOOT. So I gather we are back to square one on this foot ulcer thing too!! We have no idea why he has the bone thing going on in his foot.

Alan is not the type of guy to pin down his orthopedist and ask "Why exactly do I have this bone thing going on on the botton my foot, which causes me to have a foot ulcer".

I probably asked that question a long time ago when he first got the ulcer, but I'll be darned if I can remember what I was told.

Too many doctors, neuros, etc. etc.

Oh brother!!!

So I'll update you all when he sees the back guy. and I'll tell you what the back guy says.

melody

Wow melody, that must have been shocking to hear. What a change. Now it is really making me want to get a second opinion on my back too. Good luck to Alan!

[daniella]

First hello and hope you are good. This is a change of direction and I know how more doctors and opinions/tests are. I hope it gives him relief and direction. This reminds me of Mystery dx where one doc looks outside the box and finds help/relief for a patient after so many years of that person suffering. I wish I had more answers for you but could you call and ask them to talk to you about these results

[mrsD]

I don't know much about spinal issues. But I have a little experience:

1) a person can have horrible test results (xrays or MRIs etc) and still be normal functioning. This is explained by Dr. Sarno.
I have his book, have seen 2 shows on TV about him, etc.
The Mind Body Connection, and others. My tests for example show terrible pathology of the back, and my doctor says I should be not nearly as mobile as I am. It all depends on the individual. Every single human gets back spurs, compressed discs, etc. Everyone gets disc shrinkage, spurs etc.

2) hemangiomas are very common. They do not always cause
symptoms.

Alot of this speculation is highly subjective. I'd really ask where did those proteins in the spinal fluid come from?
Doctors really vary in their responses and belief system. Dr. Sarno who has thousands of satisfied patients, would be someone to read about.

[MelodyL]

Originally Posted by mrsD

I don't know much about spinal issues. But I have a little experience:

1) a person can have horrible test results (xrays or MRIs etc) and still be normal functioning. This is explained by Dr. Sarno.
I have his book, have seen 2 shows on TV about him, etc.
The Mind Body Connection, and others. My tests for example show terrible pathology of the back, and my doctor says I should be not nearly as mobile as I am. It all depends on the individual. Every single human gets back spurs, compressed discs, etc. Everyone gets disc shrinkage, spurs etc.

2) hemangiomas are very common. They do not always cause
symptoms.

Alot of this speculation is highly subjective. I'd really ask where did those proteins in the spinal fluid come from?
Doctors really vary in their responses and belief system. Dr. Sarno who has thousands of satisfied patients, would be someone to read about.

I wish I would have been with Alan when he got these results from his neuro. But at least we get to see THE BACK GUY AGAIN.

Maybe, just maybe, they might have invented a machine where you go in, they scan you (like Star Trek), and they see something and they go "OH!!!! THIS is why Alan has the pain between the toes".

Now wouldn't that be SOMETHING!!!

Oh well, at least he's getting measured for new custom made shoes (specifically they will take into account the foot ulcer, and his bunions and god knows what else is going on with his feet), and he'll be able to get the CROW boot off and put the shoes back on.

But he's okay, and that's all we have right now.

Could be worse.

I like to look at the cup as half full.



Melody

[glenntaj]

--as I discussed some time ago--that it is quite likely that Alan is "co-morbid". He's got symtpoms that may be from two seperate causes--a possible autoimmune attack on some of his peripehrla nerves AND some issues with compression of nerve roots or spine in his lower back--and the effects may be additive, given the possibility of the "double crush hypothesis".

This is certainly consistent with the type of relief he's gotten over the years through neurological chiropractic and massage--enough pressure was taken off to reduce his symptoms--and with his other autoimmune situations. And to get enhanced neural symptoms from more than one insult to the nerves, once there is damage, is not uncommon--diabetics have this happen all the time. (Once there is some sort of damage to anerve, it is much more prone to compressive effects than an uncompromised, "normal" nerve would be.)

Given the area that the MRI is from (lower back), my sense is that if there really was major compromise from the oesteophytic complexes in that area, Alan would be showing more symptoms, especially if the cauda equina was involved--including possible motor and excretory difficulties. But, as Mrs. D notes, symptoms from spinal problems are notorious for not matching up with the MRI pictures--plenty of people have major symptonms with normal looking MRI's, and many with really complicated MRI's have little or on symptoms.

In any case, I'm glad you're getting additional medical opinions (and if you need them, I've got other people who can be consulted).

[MelodyL]

Originally Posted by glenntaj

--as I discussed some time ago--that it is quite likely that Alan is "co-morbid". He's got symtpoms that may be from two seperate causes--a possible autoimmune attack on some of his peripehrla nerves AND some issues with compression of nerve roots or spine in his lower back--and the effects may be additive, given the possibility of the "double crush hypothesis".

This is certainly consistent with the type of relief he's gotten over the years through neurological chiropractic and massage--enough pressure was taken off to reduce his symptoms--and with his other autoimmune situations. And to get enhanced neural symptoms from more than one insult to the nerves, once there is damage, is not uncommon--diabetics have this happen all the time. (Once there is some sort of damage to anerve, it is much more prone to compressive effects than an uncompromised, "normal" nerve would be.)

Given the area that the MRI is from (lower back), my sense is that if there really was major compromise from the oesteophytic complexes in that area, Alan would be showing more symptoms, especially if the cauda equina was involved--including possible motor and excretory difficulties. But, as Mrs. D notes, symptoms from spinal problems are notorious for not matching up with the MRI pictures--plenty of people have major symptonms with normal looking MRI's, and many with really complicated MRI's have little or on symptoms.

In any case, I'm glad you're getting additional medical opinions (and if you need them, I've got other people who can be consulted).

Glenn:

As soon as Alan came home from the Neuro and told me what she said I immediately remembered WHAT YOU SAID, about there being more than one thing going on.

I just now printed out your response, so we can refer to it when needed.

Because I'll never remember an OSESTEOPHYTIC COMPLEX, from a Cauda Equina. lol

What would I do without all you people?

I shall update soon.

Love to you all.

Melody

[Hope15]

Originally Posted by glenntaj

--as I discussed some time ago--that it is quite likely that Alan is "co-morbid". He's got symtpoms that may be from two seperate causes--a possible autoimmune attack on some of his peripehrla nerves AND some issues with compression of nerve roots or spine in his lower back--and the effects may be additive, given the possibility of the "double crush hypothesis".

This is certainly consistent with the type of relief he's gotten over the years through neurological chiropractic and massage--enough pressure was taken off to reduce his symptoms--and with his other autoimmune situations. And to get enhanced neural symptoms from more than one insult to the nerves, once there is damage, is not uncommon--diabetics have this happen all the time. (Once there is some sort of damage to anerve, it is much more prone to compressive effects than an uncompromised, "normal" nerve would be.)

Given the area that the MRI is from (lower back), my sense is that if there really was major compromise from the oesteophytic complexes in that area, Alan would be showing more symptoms, especially if the cauda equina was involved--including possible motor and excretory difficulties. But, as Mrs. D notes, symptoms from spinal problems are notorious for not matching up with the MRI pictures--plenty of people have major symptonms with normal looking MRI's, and many with really complicated MRI's have little or on symptoms.

In any case, I'm glad you're getting additional medical opinions (and if you need them, I've got other people who can be consulted).

This is fascinating information glenn. You spoke about showing more symptoms in the cauda equina. I sometimes get burning in the upper inner creases of my legs and I worry about that. Could that part be my spine? I just don't know.

I hope they are going to figure out Alan's problem soon...

[Twinkletoes]

This is very interesting, Mel. I hope you're on to something that could spell R-E-L-I-E-F for your dear husband.

[MelodyL]

Originally Posted by Twinkletoes

This is very interesting, Mel. I hope you're on to something that could spell R-E-L-I-E-F for your dear husband.

MIGHT JUST BE ONTO SOMETHING!!!

Here's what happened today. I had my appointment with my podiatrist. He happens to be Alan's podiatrist also. I told him that Alan's foot ulcer was healing just fine and that I happened to bring a copy of his last MRI and would he look at it.

He said "sure" and made himself a copy to put in Alan's file.

As he perused the MRI report, he said: "oh, wow, all these bulges, and compressions, want to know what I've found out?" I said 'yeah, what have you found out?"

He said: "It's been my finding that when a person is not diabetic and has neuropathy, much of the time, it can be traced to something with the back, like nerve impingements".

I looked at him and when I said "When Alan gets off of Dr. Theirl's table, and after Dr. Theirl uses his G5 machine on his back, my husband is a new man". He said 'really!!!"

And when I said "And when I give Alan a full back massage and I punch his back and I knead his back and I go up and down his back, he says "all the pain goes away in my feet", Dr. B said "now that's fascinating, I really think something is going on with his back".

I said 'well, he is going to get fitted for new shoes on Tuesday, and he'll see the back guy soon, but I wonder what else he can do".

So he says "why not get him one of those things that they sell in the medical supply store". and he got his catalogue and he showed me a little thing called Pro-stretch. I had seen it in the Physical Therapist when Alan went for Therapy on his foot after his calf surgery.

I said "Oh, I know what this is for, it stretches the whole foot and calf muslce, etc.".

He said "this would be good for Alan, but if you can't get this then put a rolling pin, or a ball on the floor while he is sitting at the computer and let him roll it back and forth (not touching the ulcer), and if he is not rolling it back and forth, (the ball I mean), he can bend his foot forward, and bend it back.

So the lightbulb went off in my head. After finishing up, I went to Modells and I went to their exercise equipment department and they all kinds of little balls. Some were $19.99 and they were called anti-stress balls that you hold in your hands and squeeze. Very gentle little balls.

I found one called "Boddie Ball" and it was $6.99. I bought it, marched back into my podiatrist's office, had the girl go back and show the doctor what I had just purchased and if it would be good for Alan to use while he sits at the computer??

she did and came back and said "He says this is fine'.

So I just got home, unpacked the little bal and placed it under Alan's foot. No shoes by the way, just his socked foot on top of the ball, and he rolls it back and forth or he stretches back and forth on it.

The doctor had explained that by doing this, he's working the nerves up his leg and into his back.

Can't hurt!!!!

I have to yell at him from time to time, saying

START ROLLING!!!

So we shall see.

Hey, if this little ball gives anyone else thie same idea (to roll and stretch), let's see if this helps anyone else.

CAN'T HURT, MIGHT HELP

That's my new motto.

lol

Melody

P.S. AND THISIS FOR GLENN



I had printed out your post, and showed it to the doctor. He made of copy of that too. You should have heard him when I said 'Double Crush Hypothesis" and I showed it to him. He said "FASCINATING!!"
I love our podiatrist.