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 09-17-2009, 09:19 AM #1
Coffeebean Coffeebean is offline
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Default I have CRPSII and having surgery tomorrow

I am so nervous because I am scheduled to have an excisional biopsy on my right breast tomorrow. I have put this off for over three months because I fear a RSD flare up in a new place almost as much as I fear getting a diagnosis of cancer. I am going to do it even though I have my doubts. I just need to know the little suspicous spot is out and is properly looked at.

I have been taking 500mg of vitamin C this week and have talked to my surgeon about RSD. I think they plan to put the IV in my foot rather than the arm because my RSD is completely in my left arm and shoulder. I am hoping I can get through this without a huge RSD complication. Sometimes I wonder if I should just let things alone and not tempt fate with another surgery since having an ulnar nerve surgery started up this whole RSD problem almost three years ago.

I would love to hear from anyone who has had surgery since their RSD diagnosis. Was it good or bad and did you take any precautions?

Thanks so much - Lisa
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Old 09-17-2009, 09:38 AM #2
AintSoBad AintSoBad is offline
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Lisa,
I'll keep you in my prayers.
I don't have any experience with surgery since the rsd, but I think that the anesthesiologist needs to know about the rsd.

Hope that everything goes well!

Pete
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Old 09-17-2009, 09:51 AM #3
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Hi Lisa,

I have had 2 knee surgeries, and the 2nd knee surgery made the already prevalent RSD symptoms become even more evident. My doctors and PT ignored my pleas of the constant burn, until the burn manifested into many other RSD by-products.

Your situation is different in that you know the RSD exists.
With that said, Pete gave you excellent advice, and it sounds like you already have this under control.

I will have you in my thoughts and prayers. Remember, it isn't the worst until they prove it is the worst. Keep your chin up, and know you have support here.

hugs,
Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 09-17-2009, 10:17 AM #4
bbpoolgurl bbpoolgurl is offline
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Heart Praying for you!

All of my surgeries and minor procedures have been related to my RSD- nerve block injections and a SCS trial. I have never had a flare-up related to a surgical procedure (though flying for me is a completely different story).

I will be praying for you tomorrow- so that this doesn't increase your pain, and so that there is no cancer. I agree with the previous post, make sure to tell the anesthesiologist/nurse anesthetist.

Praying for you, that everything goes well. I am sure there are many others thinking positive thoughts about this for you too!
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Old 09-17-2009, 11:44 AM #5
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Hi LIsa,
I don't have any experience with surgery since my RSD but I will keep you in my prayers.
Good luck with everything
hopeful
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Old 09-17-2009, 02:25 PM #6
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HI Lisa
I had a THR on 4/13 09 and ive had rsd since 1/109 . I had the surgery without a continous block,,bad mistake,,from what ive been told and from what ive read of your post,with the ketamine,,i truly think your going to be fine,,a biopsy isnt as invasive as a joint replacemnt,,thats what i was told,,mike on this blog is haveing some hernias fixed,,he is well knowledged pm him,,,,,I myself think that you are going to be fine,,and there will be prayers sent up for you,,Christ Jesus is the great Physcian and is over looking your surgery,,,good luck to you,,,,,,,,,,,,,,,,,bobber
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Old 09-17-2009, 08:50 PM #7
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Thank you all for the kind words and encouragement. I have discussed the RSD with my breast surgeon and she was very good about arranging that my surgery be at a hospital that is a bit farther from home but has a particular anesthesiologist she wants to use. I guess she is a pediatric anesthesiologist so hopefully she will be good. I am not going to have ketamine as I have never had it before. I am going to have a regular IV in the foot with extra numbing in the breast tissue. The surgeon said as long as it does not involve a limb, I should be okay.

I will not know for sure until after the surgery. I hope I have made the right decision. The second breast surgeon I saw did not want to do the surgery because of the RSD. He wanted to wait 6 months. I can't move on with my life knowing this suspicious mass is hanging over my head so I made the decision to go ahead with the surgery. I hope it is not a mistake on my part. I kick myself every day for having the arm surgery. I had a great surgeon but the RSD complication came anyway. I just pray I won't have to go through what I went through that first year - oh my gosh - you guys know the pain - I am preaching to the choir on this forum. Only you fellow RSDers know how terrifying that nerve pain is to live with.

Okay, I am going to fill out my forms and try to relax. I feel sick to my stomach from the nerves. I plan to report back on Saturday to let you all know all went well and that we can all make it through surgeries and not face a huge flare. I pray for everyone on this board; RSD is not easy to live with.

Lisa
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Old 09-17-2009, 09:21 PM #8
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Help Best wishes..Lisa

Quote:
Originally Posted by Coffeebean View Post
Thank you all for the kind words and encouragement. I have discussed the RSD with my breast surgeon and she was very good about arranging that my surgery be at a hospital that is a bit farther from home but has a particular anesthesiologist she wants to use. I guess she is a pediatric anesthesiologist so hopefully she will be good. I am not going to have ketamine as I have never had it before. I am going to have a regular IV in the foot with extra numbing in the breast tissue. The surgeon said as long as it does not involve a limb, I should be okay.

I will not know for sure until after the surgery. I hope I have made the right decision. The second breast surgeon I saw did not want to do the surgery because of the RSD. He wanted to wait 6 months. I can't move on with my life knowing this suspicious mass is hanging over my head so I made the decision to go ahead with the surgery. I hope it is not a mistake on my part. I kick myself every day for having the arm surgery. I had a great surgeon but the RSD complication came anyway. I just pray I won't have to go through what I went through that first year - oh my gosh - you guys know the pain - I am preaching to the choir on this forum. Only you fellow RSDers know how terrifying that nerve pain is to live with.

Okay, I am going to fill out my forms and try to relax. I feel sick to my stomach from the nerves. I plan to report back on Saturday to let you all know all went well and that we can all make it through surgeries and not face a huge flare. I pray for everyone on this board; RSD is not easy to live with.

Lisa
You have my best wishes and positive vibes for a great outcome to your surgery..I have not had any surgery since my RSD diagnosis, just blocks and my SCS implant, which I believe didn't further my RSD...it really just takes off on it's own.... I too, agree.. tell your anest. Dr. and have faith in your surgeon... Try to remain poisitve on all accounts concerning this situation and we all be praying for you. Be sure to check in with us with happy thoughts.
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Old 09-17-2009, 10:29 PM #9
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Quote:
Originally Posted by Coffeebean View Post
I am so nervous because I am scheduled to have an excisional biopsy on my right breast tomorrow. I have put this off for over three months because I fear a RSD flare up in a new place almost as much as I fear getting a diagnosis of cancer. I am going to do it even though I have my doubts. I just need to know the little suspicous spot is out and is properly looked at.

I have been taking 500mg of vitamin C this week and have talked to my surgeon about RSD. I think they plan to put the IV in my foot rather than the arm because my RSD is completely in my left arm and shoulder. I am hoping I can get through this without a huge RSD complication. Sometimes I wonder if I should just let things alone and not tempt fate with another surgery since having an ulnar nerve surgery started up this whole RSD problem almost three years ago.

I would love to hear from anyone who has had surgery since their RSD diagnosis. Was it good or bad and did you take any precautions?

Thanks so much - Lisa
Hi Lisa,
You are certainly are in my thoughts and prayers. If a may, when I'm extra anxious, I use meditation and visualization. Like closing your eyes and picturing yourself at your favorite beach, lake, garden it relaxes your sympathetic nervous system. I did have a breast biopsy 14 years ago, but more complicated as also had a mass deep in lymph node group in arm pit. and another mass deep in breast. He went on vacation next day and I had huge swelling and his partner withdrew the liquid with syringe. it was green. meaning infection. I was given nothing and told nothing. It got worse and got frozen shoulder. My Dr. sent me to a rehab Dr. for physical therapy. It was bad-100 therapies. moved to other shoulder more therapy. I didn't know for 4 years I had RSD,
I haven't had surgery since RSD, but did have hand injury and bad RSD in the hand, actually full body. I did have two remissions after each frozen shoulder pt and getting range of motion back.
Are you asking your anethesiologist about anti-anxiety med before surgery. It's important to keep our system as relaxed as possible.
My husband has had ulnar surgery, broken wrist, finger trigger release twice and nothing has every happened- all turned out well.
We will be thinking of you, and please know you are important to all of us and we will be looking forward to your full recovery. Your friend, loretta
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Old 09-18-2009, 12:34 AM #10
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Hi Lisa,
I am sending you support and healing energy for your biopsy! You are making the right decision to go forth with the procedure. It will make all the difference for your surgical team to be united and have a collaborative plan in place!
That way you will feel more confident and relaxed!
I had a breast biopsy many years ago, and because I don't like sedation, it was done with local anasthetics. My left front quadrant was 'frozen' as they say! Because I was awake for the biopsy, the staff was wonderful and they played Barbara Streisand music during the procedure.
Do all you can to relax yourself with meditation, self positive talk, and you will go into this and come out of it with a head start in healing!
think of us, too!! when I have terrible pain days and feel lonely from this very solitary experience I think of my fellow NT posters, and they bring a smile to my face!!!
Hope4thebest
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