Mel,
If it were me, I'd get off the 'cause' kick. It does nothing more than cause (no pun intended) anxiety and stress, which is not good for PN- that's proven!
Do what makes you (Alan) feel better and live with it.
Get on with your lives and try to live as normal a life as possible.
Concentrate on the things you can try to do something about (healing the foot).
Believe me, once the 'acceptance' mode kicks in, you'll both be better off.
Never be complacent, always be aware of new and better ways to diagnose, but stop going ga-ga nutso about finding the cause. Your posts seem to be highly detailed, and anxiety ridden- whether its you or Alan. Let it lie.
Just MHO.

Melody so sorry about all the roller coaster information you are getting from your doctors, sounds like the doctors are not sure what is causing Alan's neuropathy. I know that we like to know what is causing it so that we can stop it from doing more damage, but for some reason many people just don't get the answers, but thumbs up for you and Alan for continuing to try.

Glad to hear that Alan does get some relief with the Chiro.even though it is temporary. Those temporary relief is what gives us hope and maybe some normal life can come back.

Trish

Thanks Trish for your kind comments.

Each day I give Alan a full body massage. He says "all the blood seems to go into my feet and all the pain goes away".

Some days are better than others. The weather has an affect on his neuropathy also.

And this morning he went to bed at 7 a.m. and he was jumping around in the bed saying "oh my god, my neuropathy is killing me".

I just massaged him, he went off to sleep, I got up and went out for breakfast. He seems to sleep better during the early daytime (as to many others who have neuropathy)

It's not a one size fits all syndrome, is it?

I hope you are having a good day hon.

And thanks again.

Melody

Melody first hello. I am sorry about your husband and the continued struggles. You are an amazing wife. I am clueless but mean well ? is the metronics a pump or the spinal cord stimulator? I thought the pump sends medication through ones system and the scs is what changes the signals and sometimes causes tingling where the pain was. I was suggested though now it is on hold the scs so that is why and also know someone from here who just got one after the trial.
You are so right this is not one size fits all and part of the frustration is what works for one may not for another. Hope you are taking care.

Hi Daniella:

No it's not a pain pump. It's an implantable little device with some wires that seem to be threaded around the spinal column and the wire (or wires), deliver electrical current that deliver stimulation (for want of a better description), and the electrical stimulation sends pins and needles down the thigh (this is what the neurosurgeon explained to us as he was holding the Medtronic device in his hand).

I then said "oh it doesn't deliver pain meds?" and he said "no, this is not a pain med delivery system". He also said "We give you a trial week first and if it works, we implant it in the body"."Some time it works and sometimes it doesn't"

At one of our neuropathy support group meetings, there was a guy there who had peripheral neuropathy and he had the device implanted. It was the second time he had to do it because the area of implantation gave him a bad infection and they had to remove it, clear the infection and reimplant a second device. He pulled up his shirt and you could not see anything.

I remember when Jerry Lewis spoke about it and he gave it rave reviews. But then again, Jerry Lewis had AWFUL back pain and this medtronic device saved his sanity. (his words).

I never forgot that. It was MANY years ago. I have no idea if Jerry Lewis still has this thing implanted in him.

Also, I asked the doctor this question: "do you mean to tell me that when you implant this thing, and the pins and needles go down the leg, THAT IT STOPS THE BURNING IN THE FEET??"

He replied "yes, sometimes it does exactly that".

Just wanted to make that clear.

Take care, Melody

Hi. Yes that is what I was suggested. There are 2 makers medtronics and ans and the choice is usually what the doctor doing it uses. Both have a video you can watch to see more what it entails. Of course it is bias cause it is made by the company but you can see more about it. I know a girl who has one who really has got her life back with it. She used to be in wheel chair and now is walking etc. I do know some though where the condition has spread. It is so hard to know cause we are all different in how we respond. I know someone who just got it from here. I will ask her though cause she just had the perm 2 days ago and is having some issues. The temp they do first which is not implanted but that allows them to see if you get any relief at all then the perm can be tried which is implanted. I have RSD which it seems more people get the scs with though the lady who got it 2 days ago has PN. If I can help in any way let me know.

Melody,

Read your post about your Husband Alan. Sorry to hear about his problems

Could you tell me if his Nerve test showed any problems with his spine, and if it was progressing?

Like your Husband, I am trying to find answers. We all need to have hope that things will improve.

Hope is what keeps us going.

BonDon

Hi there.

Well, he has had SEVERAL emg's and he was told that he has Peripheral Neuropathy, he has small fiber neuropathy (he thinks he has large also but I'm not sure about this). His feet are completely numb by the way.

I don't know if his emg showed anything to do with his spine, because the emg was done on his feet.

Melody

the next time he has an emg/ncs have the lower back added to just doing the feet...that was how they ruled out my back as causing my pn. i have a number of herniated or bulging disks in both lumbar and cervical.

Bob:

You wrote:

"Your posts seem to be highly detailed, and anxiety ridden- whether its you or Alan."

Sorry if my posts are detailed. I thought that is the purpose of these threads, ...to share info and get some answers.

And it wasn't OUR IDEA to go to the back doctor. It was HIS NEUROLOGIST's idea. She made the appointment. Alan and I felt we had to go because his neuro said "I believe it's your back that is causing the neuropathy".

And I can assure you that neither of us is angst ridden. We go about our business each and every day and make each other laugh. You only have to read some of my posts to realize this.

And we attend the Neuropathy Support groups as often as we can. I bake muffins and everyone seems to enjoy them.

I am not the kind of person who goes around with a pessimistic kind of attitude (althought I certainly am entitled to do so due to the fact that we have a son who is no longer in our lives. That is enough to make anyone ANGST RIDDEN.

But I digress.

No more detailed reports, I can assure you of that.

Melody