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 09-01-2013, 04:44 PM #1
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Default prevention from RSD flares

Hi All,
I will need to have a hysterocopy ( procedure) to remove tumor/thick lining in my uterus. It takes about 30-45 minutes, no cutting but scraping. How do i prevent any major RSD flares? What is the chance of getting a major flare? For those who had this kind of procedure or other minor surgery, did you use any pre-caution. I would appreciate your feedback so that i can discuss it with my OB/GYN.
Thanks.
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Old 09-02-2013, 08:16 AM #2
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I'm sorry...I don't have any experience with this myself.

What I have read from others in the past is that they get a pre-surgery block before any sort of necessary surgery. This, I have read, has the best chance of minimizing the risk of spread.

Unfortunately...there is still a risk of spread...which is just the nature of RSD. Even a bump can cause spread.

I would say that to prevent flare ups/spread...you are going to want to make sure you have some sort of sedation. You want to be as relaxed as possible and minimize the stress going in. There is always a risk of spread...but it doesn't happen every time to every person with RSD who has a procedure done. If this is something you need done, then you need to have it done.

Hope someone with more experience and knowledge about specific meds for a block can pipe in and share their experience.

Have you talked to the doctor about your concerns about spread/flares? Did they have any suggestions for you?
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Old 09-02-2013, 08:47 AM #3
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What you need is a continuos Full sympathetic nerve block, for amputations it's from 48hrs pre to 48hrs post. For you I have no idea how ;ong it would need to be for
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Old 09-02-2013, 09:53 AM #4
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Default Hi Numb

I don't blame you for being concerned. Your OBY may not have adequate training on doing surgery on someone with RSD. You need to seek a professional with great knowledge of RSD to work hand in hand with your doctor. There are medications I know that they have used during a proceedure so you don't get a flair up. What doctor do you see for your RSD?. This would be who I contacted first with your concerns. I wish you all the best. ginnie
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Old 09-08-2013, 03:51 PM #5
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Hi All,
Thanks for those who had replied to my thread! Due to insurance change recently, i currently don't have a pain doc to work with. However, i had reviewed notes from Dr. Pradeep Chopra, Asst. Professor at Brown Medical School, regarding pre-op, intra-op and post-op suggestions.
For pre-op, start gabapentin or pregabalin 2 weeks before, Minocycline 1 day before and continue for 2 weeks after, Vitamin C 500 one daily-start day before surgery and continue for 45 days after surgery.
For intra-operative, use IV Ketamine as part of anesthesia, apply synera patch or some numbing medicine patch over IV site before insertion of needle, IV must be inserted with minimum trauma, epidural or spinal anesthesia, if lower body surgery,
For post-op, continue low dose IV ketamine in the recovery room for a few hours-very important, continue minocycline, gabapentin/pregabalin, vitamin c and continue epidural anesthesia for pain control, if inserted pre op for at least 24 hours.
I have some questions:
Have any one use the Synera patch, how long you have to put it before numbing takes effects.
What is the difference between epidural and spinal anesthesia?
Will the doc willing to try low dose IV ketamine in the recovery room? What dose is low dose?
How is it possible to request continue epidural anesthesia for pain control for 24 hours? Normally, they would like to discharge patients shortly after the procedure. For 24 hours, is it possible to go home with it?
I would really appreciate your feedback especially for those who had already had surgery experience. We all may encounter surgery in our life. Our goal is to prevent RSD spread or flare if possible.
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Old 09-09-2013, 06:30 PM #6
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Spinal anaesthesia is the same as epidural anaesthesia. The anaesthetic is injected into the epidural space within the spinal column, by needle which goes in between 2 vertebrae. Normally, the anaesthetic is injected in a single dose to provide an effect for a pre-determined period of a few hours. If it is expected that it will need to be "topped" a number of times or if the anaesthetic is going to be required over 24 hours or even several days, a catheter is inserted into the epidural space and is left in place. Then further injections can be made or a continuous pump attached without the need to make several separate injections into the spinal column, each of which carries some risks.

There is a high risk of infection making its way into the epidural space when an epidural (or intrathecal catheter as its known) is left in place for a period of time - it leaves a route to the outside world open - so it is not without increased risks. Epidural anaesthesia normally also means you are incontinent for the duration of the epidural so a urinary catheter and urine collection bag are required. You would not be able ro go home with it. Other arrangements may be required to stimulate and manage bowel motions if the epidural is being left in place for several days.

If I understand your original post, you are having your procedure carried out without an abdominal incision - you said it is being done by hysteroscopy. It sounds identical to a d&c. This means that the likelihood of developing CRPS in that area is reduced. There is normally very little or no pain and just some discomfort with this procedure because there is no incision made either internally or externally. I suspect that the multiple procedures and precautions you have listed are aimed at more "traditional" surgical procedures requiring incisions and the inevitability of cutting pain sensing nerves. I am not in any way trying to minimise the procedure you are having but I think the risks are much lower so you may find that not all of the pre-emptive precautions are needed. There are also always risks associated with these interventions so the pros and cons all need to be weighed up with your doctor - the risks may outweigh the potential benefits.

Hope that helps a bit.
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Old 09-09-2013, 06:36 PM #7
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For me to do things like that, they start me on ketamine a day before then put me to sleep along with ketamine still running and lots of IV pain meds. If its a lower body then they do the epidural and leave it in at least a week after staying in hospital along with the ketamine and IV meds constantly running. Which works really well for me I actually come out of the surgery smiling then crying.
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Old 09-09-2013, 11:38 PM #8
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Any needles used should be pedeatric ones to reduce the risk of the needles caosing flare ot spread
Print this out and send or take to them

Hospital ProtocolRSD/CRPS Patient:
Handle With Care!
The Joint Commission on Accreditation
of Healthcare Organizations has man-
dated the healthcare institutions that
they accredit to assess and treat your
pain. Pain is now to be assessed as the
fifth vital sign. Patients have the right
to demand pain control and to be pain
free.
Reflex Sympathetic Dystrophy(RSD) also known as
Complex Regional Pain Syndrome (CRPS) is a chronic
condition characterized by severe burning pain, pathological
changes in bone and skin, excessive sweating,
tissue swelling and extreme sensitivity to touch. People
afflicted with RSD/CRPS are extraordinarily sensitive to
certain stimuli, such as touch, movement, and injections.


Patient Tips

1. Bring a written copy of your medication regime. It
is important to verify whether your medication regime
can be taken care of solely through use of the hospital's
pharmacy. Some medications may not be part of the
hospital's formulary.
2. Avoid having ice applied to the RSD-affected limb
3. Instruct all hospital staff to always ask before touching
you!
4. Request that the surgery protocols be adjusted so
that the pre-op shave be done after anesthesia
(catheter is in place for epidural or whatever). It feels
like a lawnmower has been run over your legs when
they shave without anesthesia.
Patient Room

1. Whenever possible patient should be in a quiet part
of the hospital
2. In a semi-private room, patient should be in the second
bed to avoid inadvertent bumping
3. A Zone-Air bed should be used (adjust mattress pressure
to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have
warm blankets
6. Foot Cradle to hold bed linens off body area (will
diminish tactile stimuli)
7. Frequent linen changes may be necessary due to
hyperhidrosis (increased sweating).
8. Allow family members to bring in clean sheet and pillowcases
for patient. Hospital sheets are not soft and
can irritate the skin.
9. Place a sign above bed designating affected limb
Procedures

1. Perform a phlebotomy on unaffected limb only
2. Use Pediatric needles (any trauma can cause the
spread of RSD to a new site)
3. Warm Alcohol or Betadine wipes with warm running
water on outside of package before opening package
(these wipes can be very cold to the patient)
4. If PICA site is available, see if blood can be obtained
from PIC instead of using vena puncture technique.
Blood Pressure and Pulse Rate

1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected
Transport

1. Ask what kind of help the patient needs when transferring
to a stretcher or wheelchair (simply touching
arms or legs may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding

1. Be careful not to touch patient extremities with bedside
table
Patient Identification

1. Place red bracelet on unaffected limb
2. Place red dot sticker on patient chart
PO Box 502
Milford, CT 06460
Toll-free: 877-662-7737
info@rsds.org
www.rsds.org
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Old 09-10-2013, 07:01 AM #9
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Hello Numb,

I do hope this procedure doesn't cause a flare of your symptoms. I don't recall reading where your RSD is located but, I am assuming it is not in your uterus. If that is true and you aren't currently in a flare then the risk of this procedure causing a flare/spread is reduced. At least when I had a hysterscopy years ago it was done through the cervical opening therefor no cutting (as you mentioned). So the best advice I can give is to really make sure you are hydrated prior to the the procedure for the ease of IV placement. Asking for plenty of warm blankets so you aren't cold while you are in pre-op. If you are anxious maybe ask your doctor about prescribing something like valium or similar medication that you can take the morning of to help you relax. Keeping any type of pain well controlled prior to and post will be of great benefit as well. I would also recommend soaking in a warm tub with at least a cup or two of epsom salts the night before to reduce any inflammation and increase your magnesium levels.

Is the doctor who is performing this hysterscopy familiar with your RSD diagnosis?

Take good care and try not to worry to much - wishing you a speedy and uneventful recovery!
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Old 09-14-2013, 12:14 PM #10
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Ive had a histeroscopy. It is done right and you get the continuous spinal block then you should be ok. Im not saying it will be completely fine. Everyone is different with CRPS. I had to have a lot of cysts removed when I had mine done and it took my dr longer than the typical 30 to 45 min. She was also only able to remove the ones on the left side of my uterus. I had alot of them and still do. This was also before I found out I have CRPS, so I didn't get the spinal. The good thing is I didn't have a flare and my pain lvl which has always been high and didn't move. Just be warned. You have this done you might get pregnant. I love my babies even the one im pregnant with now. But they were an unexpected delight from the surgery. Dont go into it being scared. Tell the anesthesiologist that you have CRPS and that they need todo a continuous spinal and they will. With this little one I wont have a csection. I didn't with his older brother either, but I will tell them about my CRPS and about the continuous spinal block. Keep positive.
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