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Old 07-16-2011, 10:43 AM   #1
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PHN - post herpetic neuralgia

I have been suffering excruciating pain for almost 5 years now with phn.
I have been through all the medications and the thoracic steroid injection with a pain specialist. He now has me scheduled for a spinal cord stimulator next week. This really scares me. I had horrific pain with the thoracic steroid injections.
My pain runs from the middle of my chest, under the left breast, under my arm, to the middle of my back.
Has anyone had a SCS implanted, or been through the trial test? Please tell me all about it. Did it help?
Look forward to your response!
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Old 07-16-2011, 05:16 PM   #2
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Re: PHN - post herpetic neuralgia

Sorry to hear about your pain...I understand that Postherpetic Neuralgia can be very painful and is a complication of shingles as my friend has this...how long ago did you have them and have the symptoms of this may I ask?

I have not had the SCS (I have had 3 cervical fusions) and neither has she...but I know many on here have...and as I'm sure you know...just like with anything...you will hear good experiences and bad one's....unfortunately medicine is not an exact science...yet....So I certainly hope that yours will be a success!!...

Since the pain from that effects your nerve fibers and skin...I'm hoping that the SCS will be helpful for you as it is used a lot for nerve pain type issues...

I certainly hope they also have you on a nerve pain medicine like Lyrica, Cymbalta, or Neurontin to ease some of the pain as well....Those are the 3 most effective medicines specifically for that purpose...

It's really about finding a good combination to help with your pain as one specific thing is not likely to do all the work to lower your pain to a decent level...so even with the SCS...most people stay on the nerve medicine as well....the more modalities you use in conjuction the better. I'm sure you know that one medicine isn't meant to take all the pain away but just knock it down a level or two..

Do lidocaine patches work at all for you some too?

My friend uses Lyrica, Lidocaine patches, a tricyclic antidepressant in low doses, as well as takes Percocet as the opiate...All of these together help her manage her pain to a good level of a 5 on the pain scale...the good news is that they are healing up and the Dr. says in most all cases it does go away...even though it can take months or a few years in some cases...she is mid 40's so wasn't even thinking about that this could happen...

I'm sure others will come along to help...just wanted to say hello and don't be discouraged as it's the weekend if the responses on here are a bit slow...

Sadly...it's a good reminder for someone who is 60 or older to ask about the vaccine Zostavax to help prevent shingles or Postherpetic Neuralgia....

Wishing you well!...

Last edited by Ilovemycutedog; 07-16-2011 at 05:17 PM.

 
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Old 07-17-2011, 08:44 AM   #3
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Re: PHN - post herpetic neuralgia

sorry you even have to suffer with THAT level of sick type pain. i have whats called central pain syndrome caused by spinal cord damage(surgical) that feels exactly the same as what shingles can leave behind as stinging hyper hell 24/7, it just never ever stops. i was just wondering if you have even tried the TENS unit FIRST here before even thinking of going with anything that will actually be inserted right into your spinal cord? if you have not yet tried the TENS first just to see how your pain would even respond TO what is electrical stumulation and impulses you just truely need to. this would at least give you a much clearer idea if this would or could make it worse in some cases.

going to that SCS is just a huge and very invasive procedure that does insert electrodes into the outter layer, (the arachnoid i believe)of your actual cord. and it does have potential side effects and consequences just like any other procedure too. you just really DO need to think this thru and try that TENS to see if you have not yet done so, just to know what it feels like and if it helps at all. and if that actually helps, it could be better and safer to stick with THAT at least for now instead of going right TO the much more invasive surgical aspect of the SCS. while the SCS can be a total godsend for some people, one person i know actually ended up with RSD from their SCS implant. this just 'can' cause damage from this too since this just IS the actual cord were talking about at all that this gets placed into. its just a pretty big and important decision since you would not ever be able to have ANY types of MRIs done either if it gets implanted(just a small part of other changes) among other "possibles'.

have they mentioned possibly doing just like an RFA where they would simply burn out that nerve root that the shingles crap is sitting on in i am thinking your upper level T spine given where your pain is showing by dermatome? the thing here is, while you HAVE truely been suffering with this hell for a long time, it STILL can remit itself too yet. shingles is something that can pop out and stay for a short length of time or or longer, but it still can return to it's 'sitting place' on the actual nerve root at any time too. even after this many years.

you just DO have some level of options here before consenting to that level of actual surgical procedure, esp if you have NOT yet tried at least that TENS unit to see? if not, DO for your sake, hold off on that SCS until you have at least had a chance to see how THAT actually works for you, or burning that nerve out as a possible . its no problem to just cancel any procedure scheduled and wait and see how other possibles simply work. you just DO really need to try the TENS first if you have not. mine works sooo well on my RSD pain flares that are insane and do NOT at all respond to anything we have tried either. this is all i actually use for this pain, just that TENS. my central i use that wonderful lidocaine. they have the patches and an ointment form too.

i am not trying to freak you out here, just hoping that you HAVE or will at least consider the RAF or definitely have tried that TENS unit BEFORE going that route, thats all. like i mentioned above, while the SCS can be a total godsend for some peoples pain, it also can create even more issues and pain for you to have to deal with too, and your doc should have told you this too.

i do think there are actually many more people up in the back boards up towards the top here who have had the stims implanted who could also give you some really actual tried and true advice about the SCS. they seem to have alot more posts up there on this i think than any other place on these boards that i have seen over many years here anyway. so you may want to also pop up there as well.

this just really does come down to making the best and most fully informed type of decision for you. i just think, if you have not yet done or contmplated the options i mentioned, you still do have them as possibles to try, thats all. this SCS will simply be placed pretty high up in your spinal cord, so it IS a bit more to think about. but DO check out that back board too for info,K? good luck with whatever you decide to do there updated, marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 07-17-2011, 08:13 PM   #4
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Re: PHN - post herpetic neuralgia

Hi Updated, my name is kelly. I have RSD and I had a spinal cord stimulator implanted in dec 2010, The TENS unit is similar to an SCS kind of, But for me I could not tolerate the TENS because I am very hypersensitive due to the RSD. The leads go into the epidural space in your spine, I was very scared to do the trial. But am so glad I tried it the trial is not very invasive and you will be pretty sore the first night but after that its just kinda tender for about 3 days. I would go with the trial to see if it helps. I already have RSD so the surgery to implant my permanate stimulator did cause my RSD to spread to the surgery sites, but I am thankful still that I have it. I am now able to walk with a cane, where as before I could not!
Kelly

 
Old 07-18-2011, 07:07 AM   #5
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Re: PHN - post herpetic neuralgia

sorry your RSD actually spread kelly. exactly what level or levels is your SCS implanted at? i have personally contemplated this soo many different times over the years since my RSD popped out on me post cord surgery since they just had to 'hit' and damage my SNS along with a few spinal tracts too. do you still have to take any meds for yours or did that scs actually pretty much take care of that? how much 'more' did your RSD actually spread to? alot or just a little? did the SCS take care of THAT post surgical spread too or not? just wondering.

i have been doing a combo of getting the sympathetic nerve blocks along with the TENS for my pain. while i DO have that nasty hypersensitivity too, becasue of another stupid 'syndrome' i aquired from the same surgery called brown sequard, my ability to actually feel certain things like hot or cold or pain going INTO my body, i am able to tolerate the TENS, but only if my hot/cold burn crap stays down. if i have to ramp up my TENS too high i DO create this insane spasticity, and thats when i go in for the symp blocks. these will usually(after like 4-6 days of insane UP with that hyper hell and burn), it will go down again and i can usually once again use my TENS for about six months with no real issues. had you actually tried a series or two of symp blocks BEFORE you went to the SCS or not?

with my already present cord damage, i am scared to death to have ANYTHING even close to my cord or any 'procedure" done anywhere in there. i am glad you found something that simply allows you a better quality of life kelly. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 07-18-2011, 08:51 AM   #6
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Re: PHN - post herpetic neuralgia

Hi Marcia, My scs is for my left foot and leg I also have a program for my right foot and leg just in case my RSD spreads there. The exact level I am not sure my leads are just below my bra line though. The scs takes care of that burning pain and the feeling like my skin is splitting open from RSD it also helps the stabbing pain. the SCS does not help with the muscle spasms or the deep bone crushing pain.

When my SCS was implanted I was able to come off my neurotin and elavil completely, I did still take the percocet and zanaflex. But my RSD has also spread to my right arm and hand and now to my eyes and in my incision sites, so I am back on neurotin no elavil though and I use a ketamine compound cream on my incision sites which works really well. My SCS rep will be at my next Dr. apt. to adjust my SCS settings so I can get coverage to my surgery sites.

Yes I had numerous nerve blocks both lumbar and stellate ganglion sympathetic blocks, Ahh they were wonderful but would only last 3 days. when RSD spread to my left arm and hand the nerve blocks put it into remission that was a year ago and it is still in remission, why they didnt work for my other RSD areas I have no idea. My Doc doesnt want to put in another SCS for my arm and hand because My RSD is prone to spread with surgery.
The SCS is so different from the tens its actually inside where you feel the vibration. It is so hard to explain, I still ask my husband "You cant feel that?"
I understand your fear, already having problems with your cord, and I cant say that if I were in your shoes that I would still do it. I only know that I am so glad I overcame my fears and did the trial, You have to listen to that gut feeling and do what you believe is right for your body. Definately dont go through with it because your doc is pressuring you. Only do it if it feels right for you and you are comfortable with the idea of surgery.
kelly

 
Old 07-21-2011, 05:17 AM   #7
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Re: PHN - post herpetic neuralgia

Ilovemycutedog, In answer to your question: I got shingles 4 yrs & 9 mos ago. Shingles & blisters lasted about 3-4 weeks. Had severe pain, like lightning bolts. Could not even let clothes touch my skin. After shingles rash cleared, severe pain continues. Had to resign from work. Yes, I have been on the usual meds, like Lyrica, Elavil, Cymbalta and others. Tried different pain meds. Had 2 thoracic steroid injections (horrible pain). Refused the 3rd injection (Dr agreed). Physical therapy (caused pain). TENS Unit (no help). I still have swollen area on chest from inflammation. Presently I use the Lidoderm patch, Endocet and Morphine.
The pain never goes away. The dr. wants to try the SCS. But funny thing, he said "no" to the SCS all along until now.
Tell your friend the shingles will heal, uaually within a couple of weeks to a month. One good thing for her, it is unusual for someone under 50 to get PHN (when the pain continues after the shingles heal).
Thank you so much for your response to my message.
Hope hou are doing well after your 3 cervical fusions.
Best of health.
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Old 07-21-2011, 11:50 AM   #8
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Re: PHN - post herpetic neuralgia

Dear Marcia (i think), I'm new and have not figured all this out yet,

Yes. I have tried the TENS Unit, but it makes the pain much worse & I have to take the unit off.

You describe exactly my feelings about the SCS maybe causing other problems. I worry that it may cause scar tissue to form which creates more
pain in some people, to the point that they have to have surgery to remove the scar tissue-----more interference with the spinal cord. I worry about the lead movimg out of place. Maybe puncturing the spinal covering and allowing spinal fluid to leak. And as you mentioned, I worry about not being able to have MRIs if that becomes necessary. Also I'm concerned about the vibrations near my heart. I worry about the tunneling to place the wire & leads of a permanent SCS.

I feel that I am rejecting the possibility of total pain relief being offered to me. Plus the fact that I could maybe get off of medications, all of which sounds good to me.

I do try to think this through. In fact, it is on my mind all the time. But I still go back and forth on the issues. I considered the RFA (& ablation to cut the nerve or chemical to "kill" the nerve). But I read on this site of someone else's really bad experience with RFA. Also my pain dr. discouraged this, saying that the nerve "can" grow back together & cause worse pain than ever. There was so much pain (!) with the steroid injections that I don't think I could take that again & the dr. said I wold have to be awake and alert to help him guide the SCS into the right place.

It's been five years that I keep believing this pain will relent itself & the virus return to its "sitting place" on the actual nerve root. But its been so long----
Right now I use the Lidoderm patch, Endocet 4xday & morphine at bedtime.
As I express myself to you, I lean more toward putting the procedure off &
getting a second opinion. I get little info or support from my dr.

I think that I may inconvenience the dr. or make him upset with me by cancelling this procedure which I have already done one time. After all I do need him, my pain dr. I may want the SCS later. But he offers little support and very briefly answers my questions & does not give side effects to me.

Thank you very much for your kind support.

I also would appreciate any other comments from you.

Hope you are doing well.

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Old 07-22-2011, 08:01 AM   #9
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Re: PHN - post herpetic neuralgia

just wondering updated(and thank you soo much kelly for YOUR info too) if the doc has mentioned anything to you about a possible medication pump(intrathecal), and yes, while it would be a bit more invasive but what i have heard, much less risk of overall complications, and its placed into the lumbar further down,and NOT AT the actual level where you would be having your pain and leads placed with SCS. the differences in these two units is with the medication delivery, you can use ALOT of different meds like prialt(something i have ALWAYS wanted to try but its only that one way delivery), that is made from of all things, sea snail venom, but it is like 10,00 times more powerful than morphine and CAN hit pain like with the generator you are describing too? but alot of different meds can be tried and if i am remembering right, with that intrathecal pump, once you remove it, nothing actually stays behind like with 'cemented in' leads/paddles of the SCS does? do not know that for certain(DAVE/SHORELINE can you pop in here???). but there is shoreline here who i KNOW has had one of the pumps( and probably others too), but i just know for certain shore has one, and for quite a few years too, placed that i think up until he went that route could never ever really get his pain managed. he had to start pain management at a much younger age than most of us, so he DID have the opportunity to try various meds and other stuff just to even 'try' and obtain any real relief, but also had to seriously fight just FOR any real relief back then too. not to mention that 'stigma' of being i think only in his early 30s and trying to get any doc to just even 'try/and fully even believe' to really treat his levels of very real pain. he definitely would be worth asking about the pain pump(you could post a thread titled ' does anyone have/use the pain pump?" that may help getting some responses from those here who just have this or have used it too?

i just do NOT think they would have to actually place this as high up as the SCS would have to be either? anything just being placed that higher up within the cord really does just carry more real risk only because of the higher levels, but for me personally just scares me since i DO already have spinal cord damage right at the c 8 thru T1 nerves from a resection of a glob of blood vessels that left behind some seriously sick crap, damaged systems like my sympathetic and one particular tract called the spinothalamic which carries that pain pathway to the pain receptors in our brains as well? this particular damage is what generated MY screaming sting hell called central pain syndrome, that, trust me when i say, it IS about as close to what you actually have in your skin that one can get. just hyper to everything, esp light touch even more than 'pushing into the areas' would be(actually has a name called "gamma pain') and it is just "there, 24/7 since i awoke in the dang recovery room back in 03. i describe this as like a severe second degree burn(along with everything that just COMES with that level of burn too) that even the breeze lightly blowing over it will send it over the freaking top? it just NEVER ever wants to stop torturing me.

your leads for the SCS, just considering your actual dermatome involved would just have to be placed at THE actual level or above it with that SCS. more risk the higher up you go, ya know, vs lumbar level with the pump?

but the amazing 'amount' of what would constitute and actual 'dose' can also be wayy higher than what you would even be able to take orally since this is delivered directly INTO the spinal cord itself so it hits that CNS within like less than a minute? you also do not actually even 'feel' any of the like fatigue, definitely NO actual type of a 'high' or other side effects you can get from some of the orals out there either since this totally bypasses the stomcah/GI tracts too.

the other upside to the pump vs SCS is if this pain or some other 'new pain' from alot of potential scources were to end up attacking you(hopefully not) the SCS would HAVE to be adjusted and with new leads placed to to even cover that vs what you already just 'have there" as a pain pump that would cover everything that comes off or from within our spinal cords too? just becasue it IS a more consistant delivery directly into our CNS, where narcotics just 'do their work'. and all that would need to be 'done'would be at the pump/fill end, no surgery.

and do NOT ever 'worry' about what any PM or surgeon or doc 'feels' about you having to cancel ANY dang procedure that YOU yourself simply have not yet completely made up your mind about yet. this just IS a big deal, and any PM should just 'know that'? thats his problem, not yours. every patient simply has the right, before ANY surgical procedure to know as much as you possibly can to simply make that 'best possible INFORMED decision for YOU" before you consent. and he knows that too.

while just about any real surgical procedure, or anything that even just involves actual cutting into our skin, also just carries inherent risks with it too(but within that spinal area? a bit more fear will naturally be much more 'there'). its just being the best informed patient that one can be, and asking whatever dang questions you want and need answers to too that matters most. AND of course getting the clearest explanations possible from that surgeon or PM. YOU are going to be the one living with whatever you decide in YOUR body, NOT HIM(being your OWN advocate, in other words). so take your time to really see what IS availiable and could be much less risky that could still very well manage your pain too.

there just are a couple of ways you could manage your pain depending, that one just does have much much more real flexability in covering any newer pain vs the other that would require yet another surgical procedure to 'try and cover' too? just something else to consider that would also not HAVE to be placed as high up in your spinal as the SCS would too. and THAT is something, trust me. i hope i have not confused you even more about your decision hon. just wanted to let you know that you do most certainly have another more fuller coverage option availiable that you can try many many times the normal oral dose allowed with too and that wont give your those same types of side effects as orals. and i personally have heard soo much 'good' about that prialt that i wish i could try that stuff just to see what it could do for me(i also have RSD in my R knee on down too that does not really respond to narcs either). if this was my decision, i WOULD go pump before SCS for where i know they would also have to simply place those leads much higher up in my lower c or upper T spine levels just to hit the central i still have in my arm on the L side. like i mentioned above, tho i am not 100% certain about pump placement, i am pretty certain that this just DOES get placed much much further down like lumbar level and not AT like the C-T spine where MY pain and yours(upper T) would need to be treated too?

just some stuff to ponder. but do NOT allow a 'set surgical date" to actually 'dictate' what you have done. never go that route, ONLY if you just happen to really 'feel' fully informed at that time. you ALWAYS do have just AS the actual patient, the very last say in doing ANY level of surgical procedure no matter what, unless of course it is life or death which this definitely is not. your PM will get over it just ducky, trust me. all you need to tell him is that you simply are not ready at this point to go that route fully until you have simply explored THAT procedure much more in depth and also are looking at other 'possibles too. that should be more than enough for him to just be fine with the delay.

you just DO need to be absolutely certain that this just IS by far, the very BEST option for YOU, thats all. every potential more in depth PM procedures like these just have up sides and the down sides(just comes with the overall territory). its when those up sides really are more positive for YOU along with considering the down sides that you have pretty much arrived at your decision. i DO wish you luck with this decision hon. you just need to do what is right for YOU and your pain process(es). good luck, and DO keep us posted on all things there too,K? marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 07-22-2011, 04:27 PM   #10
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Re: PHN - post herpetic neuralgia

updated, There's someone with the user name of "maltluver" that has a pain pump. She's usually on the back board, and sometimes she's here too. I haven't seen her on recently though. I think Marcia's suggestion was a good one. With a little luck, maybe both will respond!...janiee

 
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