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-   -   Update on alan's neuropathy (https://www.neurotalk.org/peripheral-neuropathy/96825-update-alans-neuropathy.html)

MelodyL 08-08-2009 11:15 AM

Quote:

Originally Posted by daniella (Post 549164)
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

daniella 08-08-2009 11:33 AM

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.

BonDon 08-08-2009 03:17 PM

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

MelodyL 08-08-2009 04:31 PM

Quote:

Originally Posted by BonDon (Post 549259)
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

echoes long ago 08-08-2009 07:36 PM

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.

MelodyL 08-08-2009 09:35 PM

Quote:

Originally Posted by echoes long ago (Post 549326)
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.

I have no idea when he is scheduled to have another emg, but I'll tell you something. I never even thought of his having a back emg.

When he goes to his next appointment with his neuro I'll be sure to let him know about this option.

He never has grabbed his back and said "oh oh, the pain the pain". Not once in all our married lives.

Of course, he's 62 and when he gets up, he'll grunt but then he gets going and he's fine.

He's never exhibited any sciatica or any kind of lower back pain (as far as I can remember).

It is something to think about though (getting an emg of the back).

Thanks for the info.

Melody

Trishann 08-15-2009 07:40 AM

I know it can all be frustrating but hope you find some answers. Just thinking about you and Alan, and hope you have a better day today.

Sending blessings, :grouphug:

MelodyL 08-15-2009 12:01 PM

Quote:

Originally Posted by Trishann (Post 552086)
I know it can all be frustrating but hope you find some answers. Just thinking about you and Alan, and hope you have a better day today.

Sending blessings, :grouphug:

Hi there. Thanks for the kind words.

Yesterday Alan and I went to our Dr. Fred. It was Alan's 3 month checkup. He also had an EKG. All was normal.

He had his blood tests results. All was good. He has high iron, but he was tested for hemochromatosis a long time ago, (more than once by the way).and it came back 'definitely not hemochromatosis".

All his other numbers (cholesterol, triglycerides), were all great.

Dr. Fred said "keep eating those sprouts".

I always bring him a bag of my sprouts. He's a health nut so he loves them too.

We are very blessed to have this doctor in our lives. He takes very good care of us.

So thanks so much for the kind words.

Melody

Trishann 08-15-2009 12:17 PM

Melody that is great that you and Alan has a doctor that you are happy with the care, that itself is half the battle.

I have noticed the thread you have on sprout and stuff, that is pretty cool. Learning this stuff is great.

Blessings, Trish :grouphug:


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