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 09-03-2017, 05:07 AM #1
LIT LOVE LIT LOVE is offline
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So, I received a cancer diagnosis and I'm having surgery in a few weeks. Staging isn't done until after. I'm not sure yet if I'll be able to receive Ketamine at the time of the surgery or not. Anyone else had to go through this while having active CRPS and willing to relay info? If so and if you'd rather pm or email, that's fine as well. Thanks in advance.
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Old 09-03-2017, 06:44 AM #2
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I am so sorry for your cancer diagnosis. I have had a hysterectomy but that was due to endometriosis. But I don't take ketamine so I can't give any advice on that. If I were you I would talk to you pm dr who administers the ketamine and any other pain meds you take for your CRPS and make sure he talks to your oncologist about how to treat your CRPS while going through surgery for your cancer. I would also make sure the hospital staff is aware of your CRPS and the meds you need to have to manage it as well as the meds you may need for your cancer. Again I am so very sorry for your cancer diagnosis and am sending many heartfelt prayers your way.
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Old 09-03-2017, 12:32 PM #3
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Dear LitLove,

I am so very sorry to hear your news. Know that many are thinking of you and sending prayers and positive thoughts. I hope that everything goes as smoothly as possible for you.

I know that you know the value of good self-care. Be gentle with yourself as much as you can during this time. Try to keep (legitimate, understandable) anxiety in check to lessen it's impact on your well-being. Though you cannot control what is happening, you can control your response to it and keep yourself as well as you can. I am glad you reached out. We are with you.

If possible, have a pre-surgical consult with anesthesia. The other option is for your surgeon or PM to write orders detailing what you need during and after your procedure. This is commonly done and shouldn't be a problem.

I am praying that you to have the best possible outcome, are kept comfortable and heal quickly. Please keep us updated when you can.

Sending healing vibes and many, many soft hugs,
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Old 09-04-2017, 05:13 AM #4
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Try not to worry, I know it's easier said than done, but you really have no other option. Stressing out will do nothing beneficial for you.

I had brain surgery without an issue, also a pre-operation and several follow up cerebral angiograms, I have one scheduled this month.

I always request pediatric needles, cameras, etc. and I tell every staff member that I have CRPS. I write CRPS/RSD on my limb to remind the staff they must be careful moving me.

That said, in my experience no one seemed particularly interested in my CRPS spread fears. I sincerely wish we had our own lobbying group.
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Old 09-04-2017, 11:45 AM #5
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Perhaps a nerve block for the surgery could help? It was something my dr said when I was considering surgery.
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Old 09-04-2017, 08:59 PM #6
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Quote:
Originally Posted by LIT LOVE View Post
So, I received a cancer diagnosis and I'm having surgery in a few weeks. Staging isn't done until after. I'm not sure yet if I'll be able to receive Ketamine at the time of the surgery or not. Anyone else had to go through this while having active CRPS and willing to relay info? If so and if you'd rather pm or email, that's fine as well. Thanks in advance.
Hi Little Love,

I'm sorry you have to deal with cancer as well as RSD and all the complications that brings. I agree with the others that when dealing with multiple specialists across different conditions which interact it is important to get them to communicate with each other and ask them to copy each other into letters/report. I haven't been in your situation so I'm not sure how relevant my experience is.... Recently I had my neuro stimulator and battery removed I couldn't have opiod pain relief because I was on low dose naltrexone for RSD so instead my specialist gave me IV ketamine for a few days as an inpatient. I think I had a normal anaesthetic for the procedure. I have had many unavoidable surgeries including an emergency caesarian since having RSD. The only one I had an issue with is a thoracic outlet release surgery (my hand was going blue) where they did damage to the nerve. It spread the RSD to that side however the spread and nerve injury improved a lot with therapy. I remind myself before surgery that the anaesthetic is there to disassociate my brain from my body during surgery so they can do what they need to safely. I think it's important you feel confidence in the anesthetic used. I think having ketamine afterwards would count as another protective measure as your brain is not registering the pain of the surgery. From memory,my RSD specialist said there is a 15 percent risk of spread with each surgery so that is an 85% risk it won't spread with this surgery. I would ask your RSD dr about whether any special measures may help reduce the risk eg nerve block as well as anaesthetic or post surgery ketamine, epidural etc. There are some recommendations for surgery on the RSD sites. Other than post surgery ketamine I've only ever had normal anesthetics. It would be interesting to hear from people who used the RSD guidelines about their experiences.

I hope it all goes well for you and you can feel comfortable with the decisions you make in partnership with your health professionals. Wishing you a full and speedy recovery.

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Old 09-04-2017, 10:23 PM #7
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That was a good reminder about the pediatric needles, thank you Bio!

I am having an epidural along with the general and I'm requesting a K I fusion as well, but I'm not sure if they can accommodate that or not yet.

I am very susceptible to spread. Even an iv in my "good hand" has caused scary flares in the past. I've gotten very good at calming things down over the years, and even had surgery on my "bad" limb years ago which went well, but this feels like new territory.

And while I understand the cancer is the priority, I'm equally concerned about spread or an escalation of my CRPS symptoms. I'm not all that functional but I've learned to cope with the pain I do have. I have spread to my jaw and if I'm careful not to flare it is just low grade pain. If I eat the wrong thing or talk for too long it can be a total monster. Breathing shouldn't hurt...

Anyway I've already had a few scary episodes where for a few days I had difficulty walking from pelvic pain. Worst case scenario my pain doc can do blocks or k infusions in outpatient surgery.

This is a reminder to those that have irregular periods from your meds, CRPS, or just because, you need to ask about taking hormones before you have a problem...

Thanks again for the replies.

LL
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Old 09-05-2017, 09:04 PM #8
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Hugs. I am so sorry to hear about this new diagnosis. I don't have much to offer that hasn't already been said...but you are in my thoughts and I will be praying for you.
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Old 09-07-2017, 06:22 AM #9
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I am so sorry to hear about this diagnosis. Wishing you well. And I hope surgery goes well. It is a pretty big surgery to undergo.

Good luck, and stay strong; hang in there!
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 09-24-2017, 03:21 AM #10
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Finally home. The great news is the cancer was isolated and I won't need chemo. The bad news is I woke up from anesthesia screaming about my shoulder on my "good" arm. It caused a tear in my rotator cuff and set off a horrific flare which was compounded by iv's and blood draws and blood sugar testing. My stupid, stupid self forgot to ask for a small needle at admittance and ended up with an 18 gauge for 6 days... You can imagine the swelling, pain a d bruising. I had a satellite ganglion block Fri which calmed it all down and I'm hoping it will stay calm and the arm function will improve with time.

Thank you all for your well wishes once again. I know I've become less active this past year but this forum continues to be an ongoing place to turn to those who can only understand what we deal with everyday, let alone when the you know what hits the fan.

LL
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