NeuroTalk Support Groups - Surgery and RSD- Panic!!! Help

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Surgery and RSD- Panic!!! Help

Well, I had a hip replacement almost 5 years ago which put my RSD into full gear spreading to all limbs. Now my hip is hurting a lot and I am afraid I will need surgery again. I can't live with my hip the way it is. What should I ask or tell the ortho they need to do if I need surgery- Ketamine? Nerve blocks- and will that help prevent spread even though they never worked for me?? I am so distraught- Any insight would be greatly appreciated!!

Debbie:eek:

I don't have any insight but hear and understand yor fears. I guess and I am going to be probably getting a scs but I am going to ask what kind of relief will be there for me if something goes wrong. So maybe you can ask them if you do go in a flare what meds or treatments will be available? Does your ortho know a lot about rsd? If not maybe finding a doc or one of your others to inform him/her so it is like a team approach. I am sorry you have to go through this.

Hey Deb,
Remember in Nov 2005 I had back surgery (3 level fusion) & they used Ketamine during surgery & I didn't have any more spread than I already had. I have RSD in both feet & ankles. It was starting to go into my hands right before surgery but using Ketamine slowed that down. As soon as the burning & tingling started back up I hadi SGB's for 2 yrs in a row & it is just now starting to bother then a bit again. Next visit I will talk to my doctor about starting those up again. The only suggestion I have is that you have them use Ketamine. It did take me all day to wake up from it completely. Meaning surgery at 7am & finally woke up & stayed awake between 9 & 10pm. They did put me in ICU for that duration. But as soon as I woke up they sent me down to my room.

Good luck & am sorry to hear about your hip.

DebbyV

Hello,
I was supposed to have surgery in my pelvic last year but deferred due to the RSD onset. I am thinking it again but scared of the spread. May i ask how many days should i suggest to the doc for katemine infusion? Will insurance cover it?
Take care!
Numb

Dear Debbie -

This is a topic that keeps coming up, and is an important one. One of the key techniques in blocking the spread of RSD in sugery is the use of something called "continuous regional anesthesia" during the procedure. The idea is that while a genereal anesthetic knocks you out, only the application of a local to the affected area prevents the flow of pain processing signals to the dorsal horn of the spinal cord, and ultilmately the brain, which in turn may trigger greater sensitization and the spread of RSD.

A good group of articles in pdf formats on the subject appears under the heading of "CRPS and Surgery" on the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ve/index.html:

Author: Buvanendran A, Reuben SS, Kari M, Kroin JS, Della Valle C
Title: Perioperative Pregabalin Reduces Neuropathic Pain at 3 Months after Total Knee Arthroplasty (TKA)
Source: Accepted presentation abstract for the International Anesthesia Research Society Meeting, March 2008.

Author: Cramer G, Young BM, Schwarzentraub DPM, Oliva CM, Racs G
Title: Preemptive Analgesia in Elective Surgery in Patients with Complex Regional Pain Syndrome: A Case Report
Source: J Foot Ankle Surg. 2002:39:387-391.

Author: Reuben SS
Title: Preventing the Development of Complex Regional Pain Syndrome after Surgery
Source: Anesthesiol. 2004;101:1215-1224.

Author: Reuben SS, Rosenthal EA, Steinberg RB, Faruqi S, Kilaru P
Title: Surgery on the Affected Upper Extremity of Patients with a History of Complex Regional Pain Syndrome: The Use of Intravenous Regional Anesthesia with Clonidine
Source: J Clin Anes. 2004;16:517-522.

Author: Marx C, Wiedersheim P, Michel BA, Stucki G
Title: Preventing Recurrence of Reflex Sympathetic Dystrophy in Patients Requiring an Operative Intervention at the Site of Dystrophy after Surgery
Source: Clin Rheumatol. 2001;20:114-118.

I would definitely check them out. That said, Debby's report about using ketamine as a general anesthetic is facinating, and well worth looking into.

Mike

That is what they did I believe, a continuous infusion of ketamine in the spine altho it did take me longer than normal to wake up.

DebbyV

Thanks so much for your responses! I am going to bring those articles when I go see the ortho- I guess I am jumping the gun but there is something definately very wrong - I just hope it is fixable. I can't imagine going on like this!

Debbie

My husband is contemplating knee and shoulder surgery at Hospital for special surgery. His pain management doc, also at HSS, would be involved. They would bring him in one day before surgery for iv infusions or pain meds including ketamine and he would need to stay for 2-3 days afterwards for more iv infusions. PM doctor is encouraging about the protocols stopping the spread and preventing a flare.

Is your PM dr. by chance dr. Richman? I would love to go there but I don't think my insurance covers any orthos there.....

Thanks for your input

Debbie

One of my docs suggested avoiding all surgery at all costs. (like the axe).

He said iff necessary use an epidural.

I know nothing.

I got RSD in 1995 when I have bunion surgery. I had 18 epidurals and put on zostrix (capsipin) ointment (you can buy it at Walmart over the counter) 4 times a day. I am doing pretty good.

My question is this and I do hope I will receive good info from you all. I was in a wreck in April 08. I have had 3 epidurals and have been doing physical therapy ever since the wreck. I had had a wreck in 1996 (a semi-truck pulled me down the highwary) and it hernidated L-4, L-5 disc. I have been doing well after the physical therapy, etc.

Well, this recent wreck caused me to have a L-3 hernidated disc. This has affected my sciactic nerve in my right leg also. I am in soooo much pain and it affected my bowel, urination, pelvic area, etc.

The doctor said that I should probably have surgery, but he is very cautious since I had RSD and intersistic cystis. Do I understand from your postings that if I use Ketamine or continous regoinal (local) that the RSD will not affect me if I have surgery?

You might want to ask your doctors if they are familiar with a continuous peridural catheter procedure (sympathicolysis). I had one post-surgery in Germany this past fall for 7 days after I had some metal screws removed from my rsd foot. The catheter/pump was filled with 25 ml Carbostesin and 1 ampoule of Sufatanyl epidurally as well as sodium chloride 0.9% with a maximum flow of 6 ml/hour. If I recall correctly they did not go above 5ml/hr in my case as they had accomplished the level of pain relief required. I could not get out of bed to walk on my own for risk of falling, nor could I shower for the whole week. Because I've had the rsd for 6 years they were doubtful I would find any any long term relief, they did however think it would help to prevent the RSD from spreading or getting worse from the surgery which is a huge risk. This is considered the gold standard for treating newly diagnosed RSD patients at this clinic in Germany with many patients receiving very good results.

During the actual surgery we opted for the regional anesthesia as it is believed to be more effective than a a general for people like us. The let me take my ipod in with me and I listened to my favorite calming classical music. I turned up the volume when I realized they were working away on the bones.

I have not had spread or worsening rsd symptoms.

Further to the above posting about this continuous peridural anesthesia, I've been in a conversation with someone offline about the term sympathicolysis, that term is defined as

SYMPATHICOLYTIC Interfering with, opposing, inhibiting, or destroying impulses from the sympathetic nervous system.

"so a lumbar nerve block is a form of sympathicolysis, but short term because it is a single shot, while a continuous epidural block is also a form of sympathicolysis, but longer terms since it is a continuous amount of medication given over a week's time?"

I believe that to be correct.

I thought this might be of some value in helping to understand the procedure.

MsL

Although I'm currently not facing surgery, it's something I fear. I recently fell on one of my affected knees. I ended up being okay but thought I might have fractured my patella. I resisted going to the ER because I knew they wouldn't understand and would at the very least try to ice the knee. I also have OA and fear that at some date in the future I will need surgery. I can't bear to go through all of this again. Thanks for this resource.

For anyone facing surgery here is a good alternate to NSAIDS and other drugs that are hard on our systems, Serrapeptase, I have no side effects from this. I started to take this following my surgery with excellent results! In fact I continue to take it daily because I find it still helps my pain and inflammation. I also developed OA in my RSD foot.

Quote:

The enzyme Serratia Peptidase is marked under many different names, and is well researched in Europe and Japan. Most studies are based on treating pain and inflammation due to physical trauma, especially post-operative trauma. One German study followed 66 patients after knee surgery. Three days after the surgery the patients who took Serratia Peptidase showed a 50% greater reduction in post-operative swelling than the control group (2). Additional clinical studies cover treating sinusitis, respiratory ailments and breast engorgement, and show that this enzyme also induces anti-edemic activity (prevent fluid retention and swelling).

Logical extension of the anti-inflammatory benefits of this enzyme, have lead to such products being marketed for arthritic conditions. One study out of India confirmed its effectiveness on carpal tunnel syndrome (65% of cases showed significant clinical improvement) (3) and new studies are currently being undertaken to confirm its effectiveness in treating arthritic conditions. As well as reducing inflammation, Serratia Peptidase can block the release of the chemical messengers sent from inflamed tissue that signal pain, and so functions effectively as a pain-blocker.

Contraindications:

All variations of Serratia Peptidase will increase the concentration of antibiotics in the bloodstream. While this can allow for less antibiotics to be used, if they are properly prescribed together, it can be dangerous to mix the two without professional guidance. Because proteases reduce blood platelet aggregation they should not be combined with blood thinning medications, again unless under the supervision of a trained professional. All protein digesting enzymes can irritate existing ulcers and should be avoided by those with stomach or intestinal ulcers. And, as a general precaution, if you are pregnant or nursing, consult with a professional before using.

References:
1. Cichoke, Dr. Anthony J: The Complete Book of Enzyme Therapy. Avery Publishing, Garden City Park, NY, 1999, pp 46,52.
2. Esch PM, Gerngross H, Fabian A. Reduction of postoperative swelling. Fortschr Med. 1989; 197 (4):67-8, 71-2
3. Dept. of Neurology, SMS Medical College and Hospital, Jaipur. A prliminary trial of serratiopeptidase in patients with carpal tunnel syndrome. J AssocPhysicians India, 2000 Nov: 48(11):1130
4. Murray, Dr. Michael T: The Healing Power of Herbs. Prima Publishing, Rocklin, CA, 1995, pp 60,65,67.
5. Kee, W.H., Tan, S.L., Lee, V., Salmon, Y.M., "The treatment of breast engorgement with Serrapeptase (Danzen): a randomized double-blind controlled trial.", Singapore Med J., 1989;Feb 30:48-54.
6. Nakamura, S., et al., "Effect of the proteolytic enzyme serrapeptase in patients with chronic airway disease.", Respirology, 2003 Sep;8(3):316-20.
7. Mazzone, A., et al., "Evaluation of serratia peptidase in acute or chronic inflammation of otorhinolaryngology pathology: a multicentre, double-blind, randomized trial versus placebo.", J Int Med Res, 1990; Sept-Oct 18(5):379-88.

MsL

Debbie,
I am sorry that your hip replacement made your RSD flare and spread to all your limbs.
Before you consider another surgery, it would be good to try to find out why your hip is hurting so much. Is a nerve being pinched ? Are your nerves in a flare from something irritating them ?
(first see what you can find out what is going on)

If you do need to have a new surgery, it is a good idea to get an anesthologist that understands RSD. Or try to find one at a pain clinic that you can speak to as to what is the best way to keep your nervous system calm during the surgery and after.
Severe pain can make us do things that we normally would not do.
Try to think this out logically as to what is going on with your body causing this pain.
Is it a new flare ? Has it been a problem ever since the surgery ?
Have you had an MRI or something to see what is going on ?

REiki is a wonderful way of getting our nerves settled down. maybe your nerves are in a flare and need to settle down ??
Let surgery be the last thing you need to do if absolutely necessary.
A good anesthesologist can give you the information you would need to have your surgeon oversee for the person handling your case if you do need surgery.
You are obviously in a whole lot of pain. I hope you can find out what is going on to cause this pain. Ketamine is an old form of anesthesia. So if there is something going on asnethesia is not going to solve it.
If there is no physical reason, then your nervous system is in a flare, and hyperbaric oxygen deep dives will resolve the issue getting oxygen into your cells. Or a Soma body worker can help you get things calmed down also.. I hope some of this information can help you.:grouphug:

Quote:

Originally Posted by debbiehub (Post 315652)

I can't give much insight as I have so many different things going however making sure you have a DR who knows about RSD is the best idea. I have a SCS, just got it in NOV 2008, it helps the RSD but not good on the bones, for me, do some research on the SCS to make sure the DR's know that you know about it. I got lucky and got a good pain center and it was in a team effort between an ortho and the neurologist at my pain center.
tjbird

I have had around 14 surgeries since RSD and I got blocks for most all of them and had no spread. Where I didn't have the blocks I had spread.

I think that the Anesteolgist are more up on RSD nowadays then they use to be and also some are more up on it then Drs.

What I did was tell the Surgeon I had RSD and asked him to do blocks and then when I got in the room to be prepared for surgery, I told the Anesteogist and they have all done blocks with no hesitation.

I know there are new things out there as others have said and I think if you make sure your Dr. and Anesteolgist is aware of the RSD then you should be ok with surgery.

I realize a lot of people say, no surgery. My feeling is there comes a time when you have no choice on some issues.

Ada

Sorry I missed this post. It has been a while since we have talk. Would you please update me and let me know how you are doing?I am so sorry to hear of your continue struggle with this. Im thinking about you, I'll call soon.
Gentle Hugs :hug:
Di