Post Herpatic Neuralgia plus Ramsey Hunt Syndrome, contacted after shingles which was not diagnosed by 5 doctors in a hospital and 2 small strokes, how does one cope with this infernal pain, it has been going on for 1 year 6 months and not getting any better, I have been prescribed every treatment know to my Pain Management Clinic and my GP, this even included Morphine which did not work, the only suggestion is from my neurosurgeon who wants to give me a Phenol injection into the ganglion which can have horrendous side effects, including more paralysis, meningitis and ulcerated eyes, has anyone had any success with anything, please do not suggest sleep as the pain wakes me after a couple of hours even after taking sleeping tablets and diazapan. any help greatly appreciated
Hi jane sorry to hear that you are in so much pain. I had shingles a year ago and then i came back without the rash. But now I have nerve pain in my hands legs etc. my head itches it burns just random things are happening to me. The other day part of my nose felt numb at the tip. Once 2 of my fingers went numb for 10 -15 min.
Any idea what this could be? I already had 4 mri and emg test and tons of blood work all of it shows clear
hi Jane,is this injection also called a sympathetic ganglion injection?i think this may be the same thing i had done.i had the symp injection.this is used for pain control (will only work for that tho if your pain is being sympathetically generated)and is also used as a diagnostic tool.
just what is ramsey hunt syndrome?what overall symptoms are you actually having and where?also where exactly were your two strokes located in the brain?was there any actual affectation of the thalamus?if so,this can cause its own type of pain syndrome called central pain syndrome.this is a very nasty burning stinging pain that also makes the skin extremely hypersensitive to even a breeze blowing over it.i ended up with this in my L arm after the spinothalamic tract within my spinal cord became damaged.the same thing can happen to people who have had actual strokes that affect the thalamus.this could be part of your problem if the thalamus was affected by one of the strokes somehow.
unfortunetly,as you have found out,narcotics don't work well at all on neuropathic type pain,which is what you appear to be suffering with.believe me,i can sympathize unfortunetly.just what other meds have been tred on you to try and control the pain,besides the MS?this type of pain actually responds best to anti siezure type meds such as neurontin,topomax,gabitril lyrica...there are many of these types of meds on the market rigght now that could offer some good relief.methadone is also supposed to be a wonderful med for neuro pain as well.this is one med i have really been contemplating using on myself for my pain.the tricyclic anti depressants like elavil(amytriptaline)work well too although these turnes me into a zombie no matter when i took them,day or night.the results were the same for me.most of the anti siezure meds are not quite that bad.if you have never tried any of these they could be something worth giving a shot anyways.
i am sorry i don't have a whole lot better advice for you.every injection has inherent risks to them but if these are done by someone who has alot of actual hands on experience and also using flouroscopy(an imaging technique that allows the doc to actually see the placement of the needle inside)the actual risks are minimal.i have probably had every concievable type of injection done on my spine at some point in time just trying to manage a ton of nasty pain caused by a damaged c spine and spinal cord.so far so good on the complications thing.
i certainly hope you can find something that will work on your pain.i know how much it really sucks to live with.good luck and please keep me posted on how things go.Marcia
Shimz,have you ever actually had an MRI or MRA done on your brain?when you say that every test came back clear,have you actually seen the reports,espescially the MRIs for yourself or is this just what your docs have told you?just wondering since most docs really never actually tell you everything that is listed in your rad reports,just the info that THEY feel is important.if you haven't seen them you need to obtain your own copies.it really does sound like you may have something else going on than what you mentioned as just being post shingles pain.
exactly where did you have the shingles at and where are you currently having this pain?shingles will usually just follow the actual dermatome that the virus has been sitting on as far as that innervating nerve root.so generally it will only be one specific area and does not "spread" out at all to other areas.any neuro/nerve pain would be within the actual borders of that innervated dermatome.if your pain is actually out of that dermatome then there is something else probably causing it besides post shingles pain.marcia
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.