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.

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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