[gabrielyse]

Hi! I'm a long time reader here but posting for the first time. I'm looking for information on behalf of my fiance. 7 years ago she was in a car accident that ended in a diagnosis of RSD 18 months after the initial event. We've been together for the past 4 years and it has only gotten progressively worse since. We recently moved from NY to NV and she had to abandon her pain management dr. The doctors out in Vegas have been awful, but that's a post for a whole 'nother day. Recently her blood levels dropped to a dangerously low level of a 6 for three months straight and when searching for the cause they found a 7mm ovarian cyst. 10 years ago she had the cyst and left ovary removed due to sever endometriosis, but they would not perform a full hysterectomy. Now, the doctor is leaving that decision up to her... remove the cyst, remove the ovary, remove everything. she is leaning mostly towards removing everything so surgery would never have to be a consideration again. but that means menopause (the second time and at 31) and hormone replacement.

Now the fun part... what to do about the RSD? In the past she had a fluoroscopic cervical epidural done. Because he has such a pain ridden reaction to it, a surgeon decided not to do surgery to repair a labrum tear, thinking it would make the RSD worse. Also she has tried two different rounds of sympathetic nerve blocks never being able to complete all 3 rounds because of such sever adverse reactions.

Her pain management doctor out here is her GP. Unfortunately most doctors will not prescribe her medication as she needs it and most pain management anesthesiologists refused to take her on as a patient bc she refused any more nerve blocks and refused a spinal simulator. Her former dr in NY has spoken with her about a peripheral nerve block to numb her entire lower half... but the last blocks and epidurals caused the RSD to spread to those sites. We've seen things about ketamine online, but not sure of the specifics or how to approach the anesthesiologist about it.

The surgeon has been great about all of this. Scheduling 3 weeks out and calling all her former doctors. Even gave us the number to the anesth. who will be there that day to have a phone consult with before the pre-op. Still waiting for that call back, but in the mean time trying to get as much input as possible. We've both realized this is basically a game of russian roulette, and there are no right answers for any part.

Anyone have any advice or suggestions? Anyone had any adverse reaction due to hormones? She has been receiving testosterone injections and will continue to do so.

[musicgirl757]

Sorry to hear about your fiance's situation. I have RSD and just went through surgery to remove cancer from my thyroid, completely different but still, surgery is surgery and is no friend to RSD. While I can't answer your other questions, I just wanted to stress the importance of loading up on Vitamin C before, during and after surgery. It is very important to prevent the spread of RSD. Surgery actually triggered my RSD. Good luck! I also recommend informing everyone who will be taking care of her during surgery about RSD so that they know. I even asked for a pain consult while in the hospital and was able to get my pain under control with that.

[reluctant@thetable]

Welcome officially. I was in the same spot as your fiance. My PM's nurse practitioner told me there was nothing more their group could do for me. This was after just 2 failed blocks and their recommendation that I get a scs from their partner. My thought- great, now where do I get my care, my treatments, and my drugs from. I jumped ship to a better PM and have never looked back. I travel 2 hrs. each way to see him- that's about as far as I can tolerate. My new PM discussed a possible need to repair my foot and what would happen if I absolutely needed that surgery. He would have started an epidural on me before the surgery and left it in until my foot was healed. The point was to completely knock out any pain perception until the pain was gone.

Prior to my crps/rsd I had a bld. count of 7 (Hgb). At that point I was getting dizzy and faint so I can imagine what your fiance is going through.

What I would suggest is that your fiance's dr. consult a reputable crps/rsd expert if the surgery is needed. Then have them leave the remaining ovary in. That way she won't go through menopause (her remaining ovary keeps functioning but she won't have monthly periods which is responsible for the blood loss). I had my hysterectomy and they left one ovary in. I was thankful every day for a LONG time. It made me a much happier person.

Give yourself a pat on the back for all the support you've given your fiance.

I have read papers by 2 US surgeons who use a procedure which they claim has been 100% succesful in preventing the spread of RSd during operations upto and including amputation
They give a continuos full sympathetic nerve block from 48 hrs pre-op until 48hrs post op.

Look for my post further down on Hospital Protocol and print it out

[alt1268]

I have right foot and ankle rsd. I also had a full hysterectomy due to endometrosis a 3 years ago and actually had no problem with menupausal symptoms until last year, when all of a sudden I was having more then 20 hot flashes in a day.
I had my surgery after I had rsd, but before I was dx. so I did not know any better. fortunately, I had no spread.
Because she is so sensitive, I would say the one dr. is right- have a block done.
Keep us posted on the status and welcome to neurotalk.

[gabrielyse]

thank you so much for such quick responses!! Unfortunately, leaving the ovary in isn't an option, the only option is leaving the uterus in. But compounded hormones can raises your risk of cancer and it leaves the bleeding problem still open, and she really doesn't want to have to need another transfusion.

Her only concern with the block is that the nerve blocks and epidural done in the past caused the RSD to spread and cause such an adverse reaction. She was sick for weeks after each incidence, to the point where one surgeon decided against surgery and two different doctors stopped the blocks mid series.


I'm still waiting for the anesthesiologist to call, but how long can they leave the epidural in after? Also, can you take your pain medication while that is running? I know we need to discuss this further with doctors, just wondering what other people's experiences are. she's on neurontin, cymbalta, percocet and ms contin, all very high dosages and taken frequently, but is the only thing that helps her get out of bed at all or get even 10 minutes of a 6 pain level a day. She had fought taking so much medication but the stress on her body was causing her organs to not work properly- now on the medication everything is functioning properly.


The RSD started in her neck and has since spread to her jaw, shoulder, arm, hand on the left are the worst. She's been fighting it from spreading too much to her back, left hip and left knee. I know she will be devastated if it spread lower or across.

[gabrielyse]

Does anyone know of a specialist in Las Vegas? 6 doctors wouldn't take her case, 1 she left after 2 months and the doctor saying 'the party's over, no more pills' and 1 who claimed he could cure RSD by taking her off all her medication and throwing her in a pool (which didn't even work in the early stages). Her pain management doctor is now her GP who is wonderful.. but in no ways an expert AND doesn't accept Medicaid so I pay for it all out of pocket.

[tkayewade]

I had a full hyst in 08 pre rsd fortunately. I was 33. I am almost 39 now and have never taken hormones. I had stage 1a ovarian cancer. Anyway, I have had 3 surgeries in 8 months. I had wicked spread of RSD already, but I started taking vitamin C and E. I also get the blocks as well. I wish I had a magic answer, but the vitamins do help. They also help when my bird bones break. I must be booted or splinted at least every 2 or 3 months.

[reluctant@thetable]

I had my indwelling epidural for 5 days (not for surgery but as an attempt to knock out the pain). I was able to also receive IV pain medication while the epidural was running. Neurontin didn't work for me but Lyrica did and took its place. I know many people on the boards take narcotics but my PM does not prescribe most narcotics b/c (if I recall correctly) they compete with the endorphin receptors in the brain which make us feel better. He does prescribe a synthetic opioid- Tramadol. I know its very difficult when doctors refuse to treat b/c I've been there. Hang in there. Because your fiance has a willing GP, see if he will contact one of the well-known crps specialist to consult on what can be done for her. I think it's inhumane for the 6 doctors to refuse to treat her and to leave her in the position that she's in- IMHO.

[gabrielyse]

thank you! i'm happy to hear you can still receive pain meds with it in. the neurontin is something she takes in spurts, but 3000mgs at a time or something like that. it causes her to turn into a complete zombie but helps so much with the nerve pain. Lyrica and Elavil never really worked. I think we've both pretty much resolved ourselves to the fact that there really isn't a better solution than the epidural and if it spreads, we deal with it then. And if it does get worse it'll be time to start looking into more experimental/drastic treatments.


I just wish the anesthesiologist would call back!! The anxiety of waiting is the worst!