Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-14-2012, 07:34 AM #1
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Question RSD: Hysterectomy and Prolapsed bladder

Has anyone had a hysterectomy and/or surgery for a prolapsed bladder that was dx with RSD prior to either one of these surgeries? Also, do you have CRPS I or II?

My OBGYN has recommended both of these surgeries for me and has stressed to me how that in combination it will be a MAJOR surgery. That was in 2010, and I KNOW that I really do need them both more than ever. I have a prominence of CRPS II in my legs but it has progressed to full body over the past 18 months or so. To say I’m hesitant and worried would be an understatement. What to do, what to do?

I would love to hear any feedback / advice. Thanks in advance!
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Old 09-18-2012, 06:40 AM #2
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I had a hysterectomy 2 years before I was diagnosed with RSD and just saying from a "healthy at the time" woman, it was absolutely one of the best things I ever did. I could not imagine going through the menstrual pain every month along with the constant pain in my legs, let alone the extra water weight that I would have had. To tell you the truth, I was one of those women who thought I wouldn't feel sexy again afterwards, boy was I wrong! My husband said just the relaxing of my body in general, because I didn't have uterine or bladder pain during sex was a turn on for him....now, of course we have had to figure out how to get around my leg pains, but we have had fun experimenting..good luck!
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Old 09-18-2012, 11:29 AM #3
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Hi Vrae! I was diagnosed with RSD 21 years ago. I had a hysterectomy and o-rectomy 16 years ago. It was the best thing I ever did. I do not know if any of the pain I felt was RSD related or not, but that particular pain went away when they removed everything. I did not experience any RSD complications from the surgery. My RSD spread came much later when I injured my hand, etc...

Good luck!
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Old 09-18-2012, 11:50 AM #4
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Default Dear Vrae

I had prolapsed, and had several other proceedures at the same time. With RSD, you need to find a doctor that will work in conjuncion with your surgeon to address the RSD issues. There are medicines for surgery, that will not trigger a flair. One I know of is Katemine. Keep asking question, and don't submit to any surgery without second opinion, and a specialst in RSD. I do wish you all the best. ginnie
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Old 09-18-2012, 01:29 PM #5
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I was dx'ed with RSD in my left wrist/hand 6 years ago. Thankfully, I had had a hysterectomy a couple months before my wrist injury, but a year ago I had to have the remaining ovary removed. My OB/GYN and I discussed the possibility of surgery causing an RSD spread, but decided it was necessary. Sadly, my fears of spread were confirmed, though I was in denial until a few months ago...kept trying to convince myself it was just normal post-surgery sensitivity. But I knew it wasn't since it was the same burning, sandpaper-across-a-sunburn scraping that's in my hand.

But, even though mine spread, I know the surgery was necessary. If you really need that surgery (and it sounds like you REALLY do), then you probably should have it. The RSD may not go there, but if you don't take care of the other stuff you're still going to be in pain and possibly causing more problems. Not telling you what to do, but just saying if it were me I would most likely have the surgery and pray for strength no matter the outcome.
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Old 09-20-2012, 02:50 PM #6
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Thank you all so very much for your feedback! I really do appreciate it!!
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Old 09-20-2012, 05:35 PM #7
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You would want to consult with an anesthesiologist that has RSD experience. A sympathetic block (via flourishing) that would last a few weeks post surgery would be a good idea, as well as additional blocks as needed. A Ketamine infusions a week before the surgery, Ketamine as a part of the anesthesia, Ketamine infusions once a week post surgery for 4 to 6 weeks would be ideal. The big thing is to have insurance pre-approvals for whatever you and your team of docs decide you need. Especially considering you already seem susceptible to spread!

You won't have time or be well enough to deal with fighting with your insurance after your surgery, as you know. Hopefully, you won't have a hard time, but better to be safe than sorry.

Good luck!
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Old 09-20-2012, 09:49 PM #8
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I saw my PM yesterday and asked him a similar question. I have a foot injury that can take up to 1-1/2 yrs. to heal. My crps has been diagnosed for just under a year. Treatments that I've had do not last very long. I questioned whether the original injury is interfering with my recovery or inability to progress. I asked my PM if I should get my foot fixed with careful anesthesia before, during and after. He told me that if surgery would be required they would send me home the next day with an epidural in place and running at home until my foot had healed. (ugghh). He also referred me to a different foot and ankle surgeon to get a second opinion because my first surgeon said he could not operate on me because he would make the crps worse. The fun continues... (heavy sigh)
On a brighter note, I had a hysterectomy done a number of years ago before I had crps. It was one of the best decisions I ever made. I didn't need my uterus anymore and begged my md to take it out. I told her it was like an unoccupied hotel room that would never be rented out again so what was the point of keeping this problematic organ? I had a morphine block anesthesia that was left in for 24 hrs. I went home the evening after my surgery and only required Advil for pain. Highly recommend the morphine block with general anesthesia. For months, I was thankful for the surgeon on a daily basis. Now, over a decade later, I think weekly of how grateful I am to my gynecologist for doing the hysterectomy for me. (Mine was medically necessary and my gyn told me she knew my life must have been miserable for quite a long time.
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