Audarah I forgot to say it would make sense to look into the PNS now as you say you have had a session and it helps give relief... unless your doc can for sure tell you things will calm down AND give you a time when IT WILL calm down and heal. other wise why keep waiting ... inquire about PNS with your doctors now . try to find the best . not just one thats near.
PEACE
BMW

Thank you for your reply, Burnt. I am in the Pittsburgh, Pennsylvania area. Just don't send me to UPMC Presby- they are the ones that did this.

Can anyone please tell me if their AD pain waxes and wanes? Do you have days where you have next to no pain ( maybe still the dead feeling) and then days where you cannot even move because of pain? I was told by many that AD pain does NOT wax and wane. Opinions? Experiences?

I do need to find a new pain doc, you are surely correct about that. If ANYONE knows a good pain clinic in the Pittsburgh Westmoreland County or Allegheny County, Pennsylvania- please let me know.

Thanks so much,
Audarah

East coast ...I would suggest out of state. I will hunt some info for you.
My pain dose flare up, I have worse days . the weather affects my pain. stress . some days are hell especially the ones right in a row. I dont know if thats what you mean by waxing and waning. everyone is different. mine is constant numb then flares up with weather, low pressure , storms hurricanes, touching on the area, ... or just cus it wants to be pain monster .
since PNS has helped others I know with, o.n. t.n., bi-lat, atypical a.d. etc... Can I ask why dose it make a difference if you call your pain a.d. . or a-typical ? I myself do not see much difference when it comes to pain. M.S. , R.S.D. , Fibro only the letters are different but that about it.
It is law that you have right for 2ed opinion !! don't settle for going to just anyone. be your own advocate!
PEACE
BMW

Burnt:
You asked why does it matter if I call the pain AD or Atypical.

AD is pretty permanent and doesn't just go away; it is always there and hell on wheels. Atypical? At least that went away from time to time and I had a semblance of a life.

Got you I thought you meant you would only think about PNS if was a.d. sorry I misunderstood. the doc that treated you with direct current facial stim . have they mentioned PNS at all? I am leaning towards Cleveland, Colorado, Cal , . not for the doc. I mean once this is in they are kinda out of the picture for the most part.so leaning towards those areas of country only for the knowledgeable reps that program the units. still hunting info . sorry am slow on it. I have been sick for last couple weeks dx with ulcers and waiting on blood work to come back for other stuff .goin on vac and heading outta state . but will be back soon.
PEACE
BMW

Just another point of view,,,

I think that most of us with AD have been told at one time or another that it was Atypical TN...I agree with BM pain is pain the names really don't matter. I have AD and I have one area that seems to be constant but it does come and go in severity. Some days are better than others,,, the reality is are the meds helping??

If you have had issues with an MD you can always check the TNA website the normally keep a list of MD's that other people have recommended...it's worth a try... also try looking at a pain clinic attached to a major medical facility or a teaching hospital....I think that TN patients, because we are not easy and because of the meds we take and the doses we take them in,,,have a better result in a facility that is more accustomed to dealing with issues like that.... well that was worded awfully!!!! anyway try a large facility if possible they seem to help us better....

If you are looking for info on the PNS feel free to contact me by private message if you'd like...I had mine put in in January,,it saved my life and BM held my hand through out..I was blessed.. I can send photos and explain anything you are curious about...mine is q little newer than BM's so I can help there if you like...just let me know..

Sorry you are going through this but am grateful you are here asking questions...please let me know if I can help....Beth

Just FYI the last doc doing pain pumps and stims in CO left the practice. Patients need to travel to other states now....

There is one of my PNS pals out there having some issues. I wanted to post here since my goal is to keep it real and show the ups and downs. Maybe they will chime in soon . so they have had there final for around 7 months and the middle lead and that area has full force monster pain. (The upper lip and roof of mouth) . I am sure the one I am talking about will read this . so this is for you stick with your plan of going to neuro and the rep/ programmer. It may be scar tissue causing the problem. you have GREAT doc and team . Please stay positive I know with the pain back its easier said then done. I have hope once you get to neuro they will adjust programs and settings . if its scar tissue that may have gotten thick in that area where the lead is they will go in and make some magic. try to relax and only do the things that you have to do.. like eat and sleep listen to some music . and know I am sending positive thoughts, good energy and prayers. stay strong dont give up others have had to have leads repositioned . I try to get others to share the down side and the bad but most dont want to. and thats okay it is a personal choice on what to share and not share in a public forum .. I just want other to know PNS has ups and downs but if we share . we can help others get threw things that may come up .
PEACE
BMW

Trainwreck .it sound like you have been threw a heck of allot of sugeries. I read your other posts.
I favor Cleveland Ohio for docs . thanks for sharing and for the heads up on docs in Co.
would you mind questions about your pns units and now that you have pain pump how it works ? I am to tired and head pounding to think clearly and alert at moment but I have a pns pal going to mentioned state ... maybe info on pain pump could help them or someone else. why did the pns and scs not work long term?? do they know? what maker medtronics? boston sci , st jude??? where is the pump located ??
Sending positive energy and prayers your pump continues to manage the pain monster and you relish in many good days, months and years of having life back.
PEACE
BMW

Howdy BMW, I am sorry it has been a while since I have been around this thread. Things have been kinda "hairy" this summer, thankfully now beginning to fade into memory..... I was catching up on the posts, a good many, and you seem to have been experiencing a dearth of posters who have thoughts from the side of the con rather than the pro regarding SCS.

Although I am not among such posters, how well I have come to know the many who, dealing with SCS for whatever reason rather than RSD, CRPS, or TN, the issues have been similar and troublesome for those numerous "failed" attempts. Some even reaching the end all of surgery to remove units either ineffective or defective. Revision surgery has often been a fall back for surgeons, my own included when it appears the effectiveness of the permanent implant has been questionable...... another surgery, and so many approach it trepidatiously thinking all of the while "why bother?"

Migrated leads, leads not placesd well to begin with, leads swapped out for paddles for better coverage, stim which manifests in parts of the body not even "wired" such as painful chest and abdominal pain manifesting from stim of the low lumbar region, scarring which will not quit and results in impedence of the stim signal, and most recently a stim which illustrates a hiccup behavior on and off again so much so that the patient just turns off the unit because of the aggravation.

The saddest of all are the patients who go for removal of scarred in stim which was either non-functional or hurtful, as hopes are dashed and those feel consigned to misery on meds.

I do feel so deeply for the unsuccessful SCS patient situations as the disappointment is truly palpable. I want to reach out in reality and dispense HUGS to each who is thus affected. All I am capable of bringing to bear are my prayers, so they are poured out in care on behalf of these, hoping ultimately a best solution for the pain will be forthcoming.

One who cares VERY much,
Prayin,
Mark56