NeuroTalk Support Groups - Nervous about surgery

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Nervous about surgery (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/90792-nervous-surgery.html)

Hi bobber,
Sorry you have to have surgery also. What is THR revision? Hope all goes well for you too. Take care, loretta

Continuous nerve blocks?

Hi Andrea,

It sounds like you have a very complicated medical history and your upcoming surgical procedure must be very scary for you.

Quote:

a continuous block is were after the surgery the anesthesiaiogist contues to pump anestha into the surgery site to keep the rsd from knowing there was trauma done to that area,,they ussually will run it for a few days after surgery,,ive heard from sevearl here who had it done and it worked and the rsd didnt spread,,,im due for surgery in 5 weeks,,im going to try to have it done as awell,,,,,,,,,,,,,

I had a week long continuous (peripheral) nerve block done post surgery last year following a surgery on my RSD foot. It is my understanding that these blocks are typically done for upper or lower extremities so I'm not certain it would be effective in preventing spread where the intestines are involved. I'm no expert but I think ketamine infusions might be a better course for you in your circumstances.

I'm very happy to know you are at Stanford where you can be assured you are in the hands of experts. You are in my thoughts.

Best wishes.

MsL

Dear Andrea,

Wow, you have had a lot to deal with so far.

Many times on this board I have read that when a patient needs a protocol for something to do with RSD they contact Schwartzman in Philly, and that his office couldn't be nicer when they respond to those requests.

The best of luck to you, you will be in my prayers, please keep us posted on how you are doing.

Sandy

Thanks everyone for your suggestions and words/thoughts/prayers. I have a pre-anethesia and pre-op appts next friday so i'll make sure to bring all this info/suggestions to both the anethesiologist and the surgeon.

So sorry you have to go through this. I wish you the very best. I have read a lot of places that research has shown that high doses of vitamin c following an injury can prevent RSD. I don't know if it would help if you already have it, but it probably couldn't hurt. Hope all goes well. good luck.

I am sorry you have to go through more. I hope you feel better soon and have healthier/happier times. I don't have much input other then to state your fears and concerns to the doctors who will be doing it and also maybe they could speak to your pain doc or who your major rsd doctor treating you is. Many thoughts

Hi Drea :hug:

When I had my hysterectomy last year, I had ketamine and morphine through IVs and 20mg endones on request, which was quite often in the first few days. The morphine drip stayed in for I think the first 3 days, the ketamine for 5 or 6. Both really helped with my post op pain, as well as my RSD pain. And I second the comment about Vitamin C, that definitely helps the body heal and to prevent the RSD spreading.

I'm sorry you've got to go through this, on top of everything else you've gone through. I'll keep everything crossed that the surgery goes perfectly and your recovery is smooth. :hug:

x Kate

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Originally Posted by Cake (Post 531336)

ps Oh, and I think they left the spinal running for a day or so, as well. I was very well looked after! lol

lots of love and thoughts

I can say that I am sorry for your plight. I can say this....get a second opinion for sure.... As a nurse I see this kind of surgery all the time....and I see them post and pre surgical. I also know at my hospital some surgeons are better than others. Ask around and find the best....I would even suggest touring the hospital and talking to the nurses...we are in the know!
I also see people with liver transplants and liver failure. If avoidable...don't do it. But at the same time I have seen life changing results from people getting transplants...and they do great!
We actually have a couple nurses that I work with that have a bag, and they lead normal lives and even have children. I guess it is a matter of weighing your options.
I do want to say that my heart goes out to you and that most of the docs and nurses I know are caring and understanding so after the surgery AND before make sure not to be afraid to have all of your questioins answered. You can even ask to see someone who may have had it done and talk to them. I know at my work we have a support system for that. You could get to know the real life skinny about what to expect pre-and post hospital.
Lots of love,
Feel free to pm me if you have and technical questions and I will answer them to the best of my knowledge.
Jennelle

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Originally Posted by msdrea83 (Post 528055)

I have to have a pretty big surgery on July 17, an ileostomy- where they remove part of my small intestine that is bad and reconnect it to my side and i'll have to wear a bag (pretty gross and so not looking forward to it). I have also had cirrohsis of the liver since i was a little over a year old so this kinda complicates things, as well as having a colectomy when i was nine (full removal of my large intestine). Because of my liver i have developed varacies (areas in my spline and esophogus that are problimatic for serious bleeding), I haven't had any problems with these since i had the colectomy at which point the ones in my esophogus burst and i threw up a pint of blood (EW). so i saw a heptologist so i could get an ok for the surgery and he gave me a 25% chance of going into liver failure and mortality rate. but oddly enough that doesn't really bother me as much as the possibility of having the surgery and possibly having the rsd spread to my abdomen/internally.

any body have any suggestions of preventative drugs/injections i should ask for while in the hospital? i have a pre anesthesia appt in about 2 weeks and i'm going to ask to get ketamine as part of what they use to knock me out. figure i might as well try to get a k infusion that's gonna be covered by insurance while i can. since its put me in remission i don't see why it wouldn't prevent me from spreading... but if the anethesia doc doesn't go for that i'm very open to other suggestions.

Okay forgot to address this....ask for a pca (patient controlled anelgesia) they set up a machine that give continuous narcs and then a boost if you push a button. Also, make sure they give you something for nausea....IN RECOVERY.... such as reglan or zofran. Pain control will be huge... let them know which narcs work best for you or the doc will just give you whatever they want....PLUS ASK BEFORE THE SURGERY WHEN YOU MEET THE SURGEON! Toradol is a wonder drug and can be given along with narcs safely (like IV ibuprofen but better) but if you have bleeding problems not a good choice. Vistaril is great for nausea for your hospital stay plus it makes your narcs work better....hence better pain control.
Hope this helps
Jennelle

Quote:

Originally Posted by msdrea83 (Post 528055)