PHN

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I have suffered with postherpetic neuropathy for 1 yesr I have been looking into Stem Cell therapy. I have found 2 doctors who claim results, 1 indicated that he could not help the other will not return my calls even though they advertize stem cell treatments for PHN. Has anyone had any experience with this approach.

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  • Posted

    I also would love to know if anyone knows more about this.  All the doctors I have talked to want to do cortisone type shots or nerve blocks.  I will have to get pretty desperate to try that.  I am in the US.
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    • Posted

      I went the "Pain Doctor" route. It consisted of medication and cortisone shots and about $7k later I said no more. I have a business and have to work everyday and cannot be half out of it on drugs. There are currently doctors and clinics doing stem cell pain therapy for athletic and accident injuries. I went to one in Charlotte NC and though he was very through in his evaluation he was up front and said he did not think the type of stem cell procedure he was using would be effective and he had never treated PHN and was not sure how it would work. 

      I found another, R3stem cell, https://r3stemcell, and their site says they treat PHN. I contacted their office in North Carolina and they said they were not aware of the protocol but they would get back to me the same day, that was a week ago. In all fareness it is Christmas holiday time. My next approach is accupuncture. I have read where there has been success with this. 

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    • Posted

      I know alot about desperation.  I have tried a cervical block and an orbitial nerve block.  Neither of them ddi a thing.  I had one doc who wanted to do a nerve block where they go in through the neck.  But one doc was frank enough to tell me even if it worked, it would only last for a couple of weeks.
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    • Posted

      That's what I was afraid of!  Thanks for responding.  From what I have gathered from this forum at this point is that really nothing works on nerve pain.  The only thing that has help me so far is Charley's comment on training one' s brain in such a way to minimize the pain by distraction.  This has gotten me through the bad days but sure doesn't help my social life!!

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    • Posted

      I have lived through this for 8 years now and it still bothers me as much as it did when I first got over the shingles rash.  Maybe even more.  I don't know where your pain is, but mine is in my eyebrow, forehead and scalp. My best temporary relief comes from brushing my head hard with a hair brush until the nerves are raging and then applying a topical cream.  The best cream I have found is T-Relief, a point ointment I order on line.  That generally gives me a couple of hours, sometimes more.

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    • Posted

      I have the pain all over my right side from the waist up front and back.  Your idea of brushing is similar to my rubbing a cool wash cloth over the pain, air drying and then applying the lidocaine cream.  Works for awhile and seems to quiet the nerves.
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    • Posted

      I get it on-line.  Using Google, I look for T-Relief.  It is a red, white and blue plastic tube.  It is a homeopathic ointment  It says "Arnica+12" on the side of the tube, below the name.

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  • Posted

    Please let us all know if you have luck with acupuncture.  It has also been suggested to me but I have never heard of anyone who had it for PHN.
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    • Posted

      Hi Ruth:

      I had 8 acupuncture treatments, 2 per month for 4 month.  At first I thought it was going to work.  But, as the treatments progressed,  there was less and less impact on my daily pain.  After the 4th month I gave up.  

       

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  • Posted

    I have not heard about stem cell working on PHN.  I did a quck check in Utah and Nevada and could not find anyone who would offer the treatment.  
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  • Posted

    Hi Frank,

    No, I've heard nothing about it, and I've worked in the medical field as a psychologist for many years, specializing in chronic pain and other issues.  Interesting!  I'll be interested to hear what you find if the docs get back in touch with you. 

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    • Posted

      I began by searching stem cells and phn. It looks like there is some research done at Cleveland clinic, Mayo and another in California. None of them seem to give anything concrete. They have been successful in treating sports and accident injury pain but nothing directly related to PHN
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  • Posted

    My husband has suffered severe PHN pain for the past 12 months. He is on high dosage gabapentin, together with amitripyoline and oxycodeine, also capsI Caine cream. Frankly, nothing seems to have helped stop the really agonising pain he is in all the time. He paid for 6 acupuncture sessions a few months ago but that made no difference either. At last, 6 weeks ago after a 5 month wait he got an appointment at the NHS pain clinic, seeing an anaesthetist consultant. He prescribed Idocaine 5% patches. The area affected is in the middle of his back and on his front left chest area, and I stick one patch over each place. He has them on for 12 hours then he must have 12 hours without them. The result has been quite amazing. My husband says he still has a constant dull ache and occasional stabbing pains, but the pain levels are so much less severe. We just hope that, with all the budget cuts in the NHS, the GP will be able to continue to prescribe these patches as they have made such a massive difference to my husband's day to day life, not to be suffering so and even crying out in pain. We know they are very expensive, about £70 for 2 weeks supply, but we really thought there was nothing out there to help with this agonising PHN pain. I can't remember reading about Idocaine patches on this forum . They may not perhaps work for everyone but I would certainly suggest that you try them if you can as they are certainly helping my husband.

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    • Posted

      The 5% prescription patches were minimally helpful, but for me did not last 12 hours and after repeated use burned my skin.  Also they didn't stay on well and I thought they were messy.  That said, it's wonderful if they work for some.  Anything to get relief.  The lidocreme I get that is 4% without a prescription works better for me.

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    • Posted

      I agree the patches are difficult to keep on. I have to use adhesive surgical tape all around the edges to keep the patches in place - a very fiddly job! My husband has been using the patches for about 6 weeks now and fortunatrly has had no bad reaction on his skin. The lidocreme sounds interesting. Are you in the UK? If so, could uou tell me how much it costs please.
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    • Posted

      I don't know about the UK, but in the US you can buy lidocaine gel in any well-stocked drug store.  I used it for years.  I also used Aspercreme, which works better for me.  Both are cheap here. 

      Aspercreme has 10% salicylate, the active ingredient.  Some people on this site have talked about Dencorub Extra Strength Heat Gel, which has 26% salicylate.  I have not tried it.  It may or may not work better than the Aspercreme.  With Aspercreme, I can sleep much better.  It does not rid one of the pain, but in my experience nothing does.  It tends to work immediately for me. 

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    • Posted

      I am in the US .  I get mine on amazon.  1.75 oz cost under $10.  Called pain and itch relief with 4% lidocaine.  I also have pain on my back and underarm and right front.  I live alone and apply it on my back with a long handled wooden spoon.  Really helps with the pain and itch.  Maybe you could order it.  I don't know how that works.  Good luck.  I sympathize with him.

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    • Posted

      I have tried the Lidocaine patches, they seem to help, but removing the patch was too painful. I now use a Lidocaine 2.5%/Prilocaine 2.5% cream applied every 4 hours. I also take Gabapentin 600 every 6 hours. I think I will try the Aspercream too, just to see which is better. I had to get rid of all cotton, it was like sandpaper, now I wear only synthetic microfiber clothing.
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