Nervous about surgery
 

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.

lHi Andrea,
I'm sorry you are going to have to go thru another procedure. It's good you are starting to research your options now, having time on your side. It would be wonderful if you can have ketamine, since you have already experienced success with it. Just one suggestion, could you call your anesthesiologist and ask for earlier appointment, cancellation? That way you would have more time in case he doesn't or isn't willing to use ketamine in his coctail. There is a good website by Dr. Hooshmand in Florida that is now retired. www.rsdrx.com Another Dr. took over his practice I believe. I'm going to research that site for pre-surgery drugs. The RSDSA organization takes phone calls. I went to their annual meeting here in Scottsdale, AZ 135 attended the patients day and The next day was for Drs. But if you look up RSDSA, they have a phone number where they take calls. If I find something, I'll PM you. I just remembered, someone on this forum
had their Dr.. call Dr. Schwartzman in Philly and he was more than happy to share what they use before surgery. Hope the best for you. Let's keep in touch, so we can know
you get the information you need before surgery. Take care, loretta

loretta
talk with your anathesa guy and dr about a continous block after surgery. im due for surgery in 4 weeks to for a THR revison ,ive got to talk to my surgeon in about it too,
Remember that God is with you and our prayers are going up with you too. pm me when you want to and keep us posted
bobber

Andrea, I will keep you in my thoughts and meditation prayers. I feel so bad for you having to endure another procedure. I am here for you:hug:

thanks you guys for ur support and suggestions. i don't think i can change my appt with anethesia tho, since they're kinda rushing the date for surgery so i can be done with recovery by the time school starts (i'll be in the hospital for a week then recovery time is 4-6 weeks) at the end of august. so i'm cutting it close!

i do know my surgeon is going to talk to the pain management team and see what they say as well- good thing about being at stanford, having all top departments in every field.

what's a continuous block?

Hi Andrea,
 

I'm sorry to hear you are going through this. It sounds like you have been through too much already.

As far as the Anesteologist, he comes out to talk to you before you go into surgery. Tell him that you have RSD and if there is anything he can do to keep it from flaring or spreading. They haven't failed me yet with any of my surgeries.

Good luck on the surgery and let us know how you do.

Ada

I'm so sorry you have to go through this.
I had surgery several weeks ago on my ankle. I have full body RSD. I live outside of Cinncinatti OH and I went to the best hospital in the area. My anesteologist called Dr. Schwartzman (I use to see him every six months he wants me to go to Germany for his coma treatment). After the surgery they did a ketamine infusion and my RSD didn't flare.

I wish you the best of luck and I will be praying for a full recovery.
Take care,
Sherrie

Hey Andrea, man that sounds like a doozy of a surgery!

I dont have any ideas on what to do for the RSD, but you can count on some serious prayers from my house. :hug:

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 agree with Allen!

Lots of Prayers from me, too!

Keep the Faith!

Pete

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.

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

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

about meds
 

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

thank you for all the advice, i've known for a few years that this surgey would end up happening. my peds gi, the gi "graduated" to, and the gi at stanford that i now see all agree it would have happened eventually. I'll be at stanford hospital where i used to be seen at the pain clinic, so my surgeon is going to speak with them as well. i have already informed my surgeon i have a high tolerance to drugs, and will remind him at my pre- op appt next week. I have spent a lot of time in hospitals since i was about a year old, so i am very familiar with most drugs and how they work for me, along with how to deal with doctors and the staff. whether or not they like it i will make my point across haha. i am very firm about what works and what doesn't. my doctors are very caring and understanding, and they know how much i have been through and they all trust my judgement. as far as my liver goes, i have been told since i was put on the list when i was just about 10 that eventually i will need a transplant, been told by stanford, my gi's and ucsf. not that by any means i want to have it, but for the most part i'm almost rather just get it over with. i know that i can't request to have it done while i'm still young and what not, but i've been prepared for almost 16 years to have it done. i'm more worried about my rsd spreading and coming back than i am going into liver failure and needing a transplant. i'm a bit backwards but what can i say lol..

once again thank you for all your advice!!! i very much appreciate it

what's a spinal?

i had all my pre op appts yesterday. and it is very possible that i will be able to get a ketamine infusion during my surgery. so i'm stoked on that. i just have to discuss it with the actual anesethia doc when i meet him before i go in. i made sure to tell them that my left arm is completely off limits. i think i might write DO NOT TOUCH with a sharpie down my arm just in case haha.

I just wanted to send ya some well wishes and let you know I was thinking about you and your upcoming surgery.

I just had surgery on Monday (my first since the RSD diagnosis) and know know how un nerving it can be. Thankfully my anesthesiologist and surgeon knew at least little about RSD/CRPS and did their best to attempt to make things go as smoothely as possible in terms of placing IV's, etc. The surgery triggered a nasty auto immune flare up (part of my RSD/CRPS), but, on the upside, it didn't trigger too bad of a flare in my abdominal CRPS.

Praying for you !

:) L2L

I've had CRPS type II for 4 years following venipuncture injury to right arm. It has since spread to the right side of my body. Just before my hysterectomy two years ago, at the suggestion of my surgeon, I did write "no IV right arm" on all the IV sites on my right arm, wrist, & hand. No problems with the surgery.

yaa, i'm thinking a nice fat sharpie, like for a poster board, and from shoulder to hand writing "DO NOT USE"

I just wanted to send thoughts and hope things begin to look up soon. It sounds like you have been through so much and are a fighter. Many better and healthier wishes

thank u so much!

they actually have been looking up, i ran into a guy i went to hs with (graduated 2 years ahead of me) on my birthday, and we had an awesome date monday night that ended up lasting till 2 am. and we're going out again tomorrow, and he knows about the surgery coming up and it didn't make him stand offish at all like to keep gettin to know me and hanging out. which i thought it might since i'll be recouping for so long. but nope, he's sticking around! super cute too btw haha!