Underwent ankle surgery, while RSD was present
 

My story is somewhat long so I will try and make it as short as possible. Almost 1 and 1/2 years ago while I work I fell about 2 and 1/2 feet, landing on my left ankle. I was brought to the ER and recieved an X-Ray it came back as nothing broken. They said it was just a bad sprain and to stay off it, if the pain and swelling didnt let up see an ortho the following week. I was lucky enough to already be seeing a good ortho due to knee problems. Upon seeing him I was diagnosed with a 3rd degree sprain. Basically I have torn all the ligaments in my ankle.
He said PT would eventually be needed to correct this, stating ligaments don't repair themselves due to lack of a blood supply and PT would help the formation of scar tissue in the ankle to support everything. PT was a horrible experience and very painful. Forgot to mention this is a workemen's comp case, so I had them checking up on me. My 1st round of PT lasted about 3 months. Upon going to my ortho again my case manager said my ankle didn't look right and she suggested I have RSD after looking more at the ankle the Dr. also came to this conclusion. After they both told me what exactly RSD was I was pretty scared of what it could turn into. I was assured with the proper PT everything would take care of itself.
Another 3 months went by and I did have some relief, but at this time PT said I had reached a point where they couldn't help me, but I was still using a cane whenever I would leave the house. After talking to my case worker I saw a neurologist RSD was present, but he was unable to provide me with a proper treatement. So We went to the next steep and looked up a very good neurologist in Boston, MA. Lucky for me it's not a far drive
This Dr. was very experienced with RSD and provided me with a good PT treatement. However as time went along it was clear I still had ligament and tendon issues. After spending quite some time in PT for the 2nd time my progress began to slow and halt. I was still using a cane, I had greater range of motion, but the RSD wouldn't go away. Another round of PT was order, finally I had some luck and the RSD started to go away. Now thid became a ligament issue, which PT wasn't helping. I got in touch with a very good surgon in Boston. Upon going over my records he told me my only option was ankle ligament reconstruction surgery, but he was very worried about the presence of RSD. He told me I would be better off living the way it was instead of going forward with an operation since there was a very good chance it would cause full blow RSD and be potently crippling. Having no other options and wanting to lead a normal life again I went with the surgery.
I was told due to having RSD I would have to stay overnight so they would moniter and manage my pain. I had surgery on Oct 27 2008. What was supposed to be 1 day, turnt into 2 and 1/s days due to the levels of pain I experienced. I was on a pain pump, which hardly took the edge off. After the 1st 24 hours I was taken off it and give meds orally. This didn't do anything and I was literally laying in bed in tears till a nurse came and gave me a shot of morphine. This went on for an another 24 hours. On my 3rd day they started to refuse me morphine saying I can't keep recieving it. By this time the oral medication was having some effect, but I was still in a considerable amount of pain. It was decided for me to spend a 3rd night to get it under control, but the attending Dr. or what ever he was said I was stable enough to go home. And I was pretty much discharged against my will.
I spent about a month in bed, only getting up to use the bathroom and wash up. I was on some pretty heavy medication which by this time was working on controlling the pain. When I went for my follow up my surgon said the site had become infected and I was put on antiboitics. This cleared up in a few weeks.
Now a little over 2 months I am NWB when I go out of the house, but I got cleared to WB around the house while using both crutches and in an aircast. I have another appoitement coming up, but I'm unsure how I feel about it. I am still in pain and fear PT may upset the RSD, the Dr. also fears this. Going into this whole thing he was against it saying my odds of getting full blown RSD are quite high since it was such an envasive operation.
I have been trying to find out what I should avoid doing to reduce the chance of my RSD becomming worse, but I haven't out too much on how to exactly stop RSD. Everything I read points to leaving an infected limb with RSD alone, but this is the exact opossite of what PT is. I have to underdo PT to get the ankle moving and healing, but I am weary on how much I should push myself with the treatement.
I realize this is a long post, I tried to shorten it was much as I could while keeping the severity of the issue in context. I hope to get some answers and welcoming into this community.

Crps prevention
 

They are using ketimine pre op infused.. during surgery and after to prevent it spreading and also to prevent it for any surgery .. in some places..it is very effective.. also the ketimine infuson works well for gaining remission.. check Dr. Kirkpatrick in Tampa FL.. google..

Good luck ,
Sherrie

Welcome Lonehunter21!!! I am so sorry that you have RSD, but you have found a wonderful, caring forum that should help you get many of your questions answered. I am newly diagnosed (only one month) so I'm sure many of the other senior members will offer greater insight than I, but I wanted to reach out to you with my own experiences.

I am too tired to locate all of the sites that I have read regarding surgery on an RSD patient, but I have them bookmarked and will post them tomorrow for you. Quick and dirty, if surgery is deemed necessary, it is imperative that you receive sympathetic nerve blocks before, during, and after your surgery to lessen the odds of a flare. Your pain specialist (if you don't have one, you need to find a really good one) should be an active participant in that process.

Also, PROPER PT is necessary......but NOT to the point of pain. You need to try to seek out a PT that is familiar with RSD patients and has successfully treated several already. PT for us is different than PT for others. Again, I will post those links tomorrow (if another member doesn't post them first!). Lack of movement will exacerbate the painful symptoms of RSD. Your time on bed rest or time in the cast probably caused the RSD to flare. I know that I was immobile for only a week after my ankle surgery and the pain and swelling was unbearable. Finding the balance to keep the affected limb(s) moving is a delicate process....moving often and carefully, but with rest in between.

Certain massages that my PT instructed proved very helpful......they are specific massages with the purpose of moving the edema into the lymph system away from the affected area and needs to be done several times a day. It is a very gentle and specific massage....it will not be comfortable, particularly if you have allodynia.....but getting the swelling down will help in the overall healing and mobility. I am still struggling with this issue myself as well as poor wound healing. I am seeing a wound care specialist this Friday to hopefully assist in this process.

PT for us should NOT be tiring, taxing, or aggressive. If it hurts, it should be scaled back a bit to the point where it can be comfortable (relatively speaking.....as NO movement is "comfortable" for us). It takes longer for us to heal anyway due to circulation problems, so it will be a long and arduous process. Do NOT use ice and do NOT allow them to use contrast baths on you. Ice destroys the myelin sheath that surrounds the nerve cells and fibers only increasing the damage. Additionally, it is extremely painful for us.

I hope this helps a bit. Again, I will post the links I have found in the morning. There is also a DVD that I am considering purchasing that deals with PT in an RSD patient. Again, it is critical that your "team" is all familiar with treating RSD and is willing to learn more about it. Each person with RSD is different, so the treatments must be individualized.

Since there is no cure, there is really no way of "stopping" it. We all have to know our bodies and listen to our fluctuating cues. Do not do ANYTHING to the point of exhaustion. You will only set yourself back.

Best wishes to you. I am so glad that you're here and I look forward to following your continued progress!!

Welcome.

It seems triggers vary a lot from one sufferer to another and MominpainRSD has given a pretty good overview. For me very few things hurt much when they happen but the next day or two days later my hand gets very bad. I seem to experience a lot of the immediate effects in my stomach.

I've found ghinko biloba extremely helpful but you might want to clear this with your doc first. I take 120 mg in the morning and 60 mg at bedtime after building up to this for some time. Avoid stress and any painful stimuli like lights and noise (odors). Warm water seems to help a lot though it helps me only if I keep it down to about an hour per day. Epsom salts baths might help. Triggers can be anything and seem to change regularly so keeping ahead of them is a job. For me sodium nitrite even in relatively small quantities would set me off. This is a preservative in all processed meats so was very difficult to avoid. This sensitivity almost went away for a couple years and now seems to be returning a little.

Salt intake might be an issue for some. It's difficult for me to keep my salt levels in a narrow range which the condition seems to demand. For me high blood pressure seems to be a result of the pain rather than a cause but this is something to consider. Most people consume far more salt than they need and this can cause high B/P too.

You should still have a good chance of beating this thing since you've had it less than two years and you almost had it beaten once. Don't give up. There's still life after RSD.

Hi LoneHunter21,

Welcome to kind and caring group of fellow rsders. I'm so sorry you have RSD and has gotten worse after surgery. Mine started the day following surgery, but was diagnosed for 4-5 years. There is one treatment that has been found effective for RSD and it is HBOT. Within a chamber your are given 100% oxygen, pressurized at over twice the pressure we take in 21% oxygen. Mostly they are found in hospitals and a few clinics around the country. They advance healing because the 100% oxygen spreads inside the body,especially in hard to get to areas. I'm going to go for this form of treatment in a couple of months when my Dr. gets them installed in his 2 new clinics. There are good results for many, putting them into remission.
RSD is an autonomic disorder, meaning it affects involuntary organs. Thus, we have increased sweating. We have high blood pressure -sympathetic nervous system, and low blood pressure-para sympathetic nervous system. Skin temperature is effective, fluctuating from hot to cold to hot rapidly.. I have both burning hands and feet and ice cold to the bone hands and feet. Actually I have full body, generalized. I had a lot of massage therapy and pt for over a year for frozen shoulder, then moved to other shoulder more massage therapy and pt Got full range of motion on both arms and shoulders, thru both forms of therapy. I just thought it was something that followed breast surgery for some women. NO RSD So be aware of your others limbs and of many symptoms in other limbs.

I'm so sorry you have this. Please READ READ READ as much as you can, There is a vast amount of experience here, but remember everyone reacts different to various treatments and meds. So be careful in making decisions, and make sure your dr. has experience is the area he is working on.

Do you have a support group on your town or nearby. You can find the RSDS organization and type in your area code and they will tell you the closest location with a phone number of the group leader. They have wonderful presentations by Drs. Pharmacists,, etc. Also can ask arouond for Drs. ETC

Epson Salt Baths can be relaxing, but not too hot. Swimming in 86 degree water or warmer, but me mobile and helped from my feet being crippled. I have one hand partially crippled, but can cut my own food, so it works pretty good. Even warm bath water and working toes hands etc are very helpful.

Please let us know how to continue to do? I'm so sorry you are dealing with this, but and any time you can write us, and we'll be there for you. Take care, Loretta Jewell

I wanted to thank everyone for their posts and support. Like I said its been almost 1 and 1/2 years that I've been dealing with this and it is very frustrating to do through this at such a young age (22). During this time there has been a noticable drop in my GPA and overall drive to do anything. If it wasn't for my girlfriend I don't know where I would be right now. Now that I have had my surgery I am more scared then before, the risk of full blow RSD is quite high I am told. So not only do I have to worry about getting the ankle itself taken care of now I have RSD looming over head. The pain I have been on this whole time has been bad at times, but mostly managable. I can't imagine dealing with full blow RSD.

I understand exactly how you feel. I only have it in my ankle/foot. I cannot imagine how I would feel if it spread and how I would function. However, other people DO have it full body.....and they somehow deal with it (and I commend them for doing so.......such bravery!!). I've decided to enjoy EXACTLY where I am right now......even with the pain I experience. It could be worse, and one day, it may be. I don't want to miss a moment of my life worrying about the future when I could enjoy what mobility I DO have now!! Forgive me for repeating myself here, as I know I've said this in several other posts, but it warrants repeating.

"It may be on the menu, but it is not on my plate today".

I only deal with what I have to deal with right now. Let tomorrow worry about itself. Best wishes to you!! I hope you'll stick around and keep us posted on your progress!!!

I finally had the time to sit down an go through all the posts more and I have some serious concerns. In one of the posts about PT and how ice/contrast baths should be avoided, my 2nd round of PT used ice and contrast baths quite heavily and told me to do so at home. Could this use of ice and contrast baths have lead to my RSD staying around for as long as it has? And if PT starts me on contrast baths and ice what should I do? I was told the contrast baths were good to help stimulate the nevers in my ankle to get them to calm down and the ice was given at the end of the PT to help reduce swelling seeing how I have a severe ligament injury.

Oh GOSH........NEVER let them do ice or contrast baths on you.

"Application of ice exaggerates vasoconstriction, coagulates and damages the myelinated nerve fibres, aggravates the nerve damage and enlarges the area of Mechanoallodynia resulting in bias toward SIP rather than SMP. Procedures such as carpal tunnel surgery for inflammation due to CRPS, arthroscopy, or exploratory surgical procedures, also aggravate the sensory damage and reproduce a similar allodynic phenomenon.

In our study the application of ice for 2 months or longer resulted in a higher percentage of stage III-IV as compared to no ice or less than 2 months treatment(P<0.001). As ice selectively damages and coagulates the myelinated nerve fibers(which are rich in lipids), the allodynia is gradually transformed to thermatomal hyposthesia augmented by ice induced hypothermia."

http://www.rsdconsultants.com/crps_abstract.htm


American RSDHope
RSD - CRPS - Reflex Sympathetic Dystrophy
CRPS /RSD Facts
CRPS/RSDS AND ICE - CRPS AND ICE


CRPS/RSDS PATIENTS SHOULD NOT BE TREATED WITH ICE. NOT EVER!

NOT ICE, NOT HOLD/COLD THERAPY, NOT HOT/COLD CONTRAST THERAPY, NOTHING DEALING WITH ICE AND THE AFFECTED RSD AREA.

NEVER.

EVER.

IT CAN MAKE THE CRPS/RSDS WORSEN AND/OR SPREAD. IT CAN ACCELERATE THE PATIENT THROUGH THE STAGES.

THIS IS EXTREMELY IMPORTANT TO KNOW AND TO SHARE WITH YOUR PHYSICAL THERAPIST.

Ice will only cause the blood vessels to constrict more, reducing the blood flow to the extremities and increasing the pain. It can damage the nerve's myelin sheath (the protective cover basically for the nerve).

Patients can actually have their CRPS/RSDS go into the next stage from repeated application of ice packs.

Please let your Physical Therapist know this, for your sake and others.

For the medical reasoning behind this, please follow this link for one of the better explanations;

Yes, ABSOLUTELY, the ice could have exacerbated the RSD, delayed healing and circulation (already a problem in RSD) and could cause it to spread. If they try to tell you otherwise, print out the information on that link and SHOW them. Most docs and PT have never dealt with RSD before (some have never even heard of it) so they simply do not know. I point blank told my PT, after she suggested contrast baths, that it is clearly contraindicated in patients with RSD. Our bodies do NOT function like "normal" healing bodies......what stimulates circulation in others will halt it in ours and destroy the fatty covering on the nerve cells called the myelin sheath.

I hope you find these links informative.

http://www.nationalpainfoundation.or...calTherapy.asp

Thanks a lot for the info. The DR. I was seeing during my last 3 rounds of PT knew very little about RSD, in fact very little about ankles it seemed. When I reached the point where therapy was no longer helping, I went to him to see what was next. I was told to "deal with the pain and use my cane". I brought up surgery to him and I was told there no ankle operation that can help me, while the majority of my ligaments were torn. Luckly I no longer see him and I am being treated by a very good and well know Dr. He has extensive experience with RSD, said he normally sees a case 1-2 times a month. I will be starting PT soon...I think. I'm pretty worried about it due to the amount of pain I am having. It's been 2 months since my operation and I feel my Dr. is starting to get hestient about refilling my pain meds, for fear of becoming addicted. I have also came across something that I thought was unrelated, but it isn't and thats sleep. For awhile I have been having issues sleeping and staying asleep. I figured it was because of the pain in general, so I would take a pill or 2 before bed (I am currently on oxycodone, I was on oxycotin for the 1st month) I'm not too sure of the dosage right now. But it seems RSD itself my be the problem for my sleeplessness. Is this true and is it something my Dr. can help me with?

A LOT of people with RSD have trouble sleeping.....I'm not totally clear whether it is the stimulation of the nervous system, the pain (even unaware as you move the affected limb in your sleep or the covers touch it), or the changes in the brain......and sleep is paradoxically CRITICAL for those with RSD......it is a time when the body shuts back and rests and heals. I consider proper sleep to be paramount to my well-being.

I take a med that is not usually prescribed for sleep, but works for me. I, too, have a problem waking up after just enough sleep to rejuvenate me (maybe two hours) and then cannot get back to sleep. Pain meds, for some reason, cause me NOT to sleep well.....part of why I hate taking them. Perhaps you could ask your doc for Ambien ER (the ER is extended release......to KEEP you asleep).

Regarding docs that think pain meds (when genuinely needed) are "addictive".......studies have been shown that demonstrate the exact opposite. People that are in severe pain are not going to abuse drugs to get "high"....they just want relief from the pain. Two months is not long enough to become addicted to them anyway, as long as you are taking the prescribed amount.

My PT point blank told me that I needed to take whatever pain meds I needed to take in order to do the PT properly. The PT is critical in getting the affected limb moving, regaining mobility, and proper body mechanics. A limb not being used is a limb that will stiffen up, retract, spasm, and become even more painful and useless. Are you seeing a Pain Specialist??? They are usually more aware of the degree of pain that people with RSD suffer from (moderate to severe......it is the most painful of ALL chronic pain syndromes) and are better suited to prescribe the appropriate meds. Pain control is critical in the overall outcome of your prognosis.

"DRUG THERAPIES

- DRUG THERAPIES ARE NOT A CURE BUT THEY CAN OPTIMIZE PAIN CONTROL AND PROVIDE THE RELIEF NECESSARY TO REGAIN FUNCTION AND ALLOW THE PATIENT TO PARTICIPATE IN PHYSICAL THERAPY.

FOR CHRONIC PAIN PATIENTS, DRUG THERAPIES ALLOW PATIENTS TO REGAIN A BALANCE IN THEIR LIVES AND RESUME MANY ACTIVITIES THEY HAD PREVIOUSLY STOPPED. HERE WE WILL SIMPLY GIVE THE BASIC MEDICATION TYPES, AN EXAMPLE, AND WHAT THEY ARE FOR.

ANALGESICS:

- OPIATE AGONISTS – THESE MEDICATIONS TRY AND REDUCE CENTRAL NERVOUS SYSTEM ACTIVITY AND THEREBY REDUCE PAIN. OPIATE AGONISTS ACT ON OPIOD RECEPTORS TO INITIATE ANALGESIA, SEDATION, AND EUPHORIA. COMMONLY USED OPIATE AGONISTS ARE MS CONTIN, MORPHINE, OXYCONTIN, OPANA, & HYDROCODONE.

- OPIATE ANTAGONISTS - OPIATE ANTAGONISTS BLOCK AND REVERSE THE EFFECTS OF OPIOID AGONISTS BY COMPETITIVELY ADHERING TO OPIOID RECEPTORS. AN EXAMPLE OF AN OPIATE ANTAGONIST IS NALTREXONE.

NARCOTICS – USED TO MASK PAIN BY BLOCKING PAIN RECEPTORS FROM SENDING PAIN MESSAGES TO THE BRAIN. NARCOTICS ARE ALSO KNOWN AS OPIOIDS. THESE ARE BROKEN DOWN INTO THREE TYPES; CODEINE-BASED MEDICATIONS, THE OXYCODONE BRANCH (OXYCONTIN CR and IR, PERCOCET, PERCODAN, for example), AND THE HYDROCODONE BRANCH OF OPIODS (MS CONTIN, VICODIN, LORTAB, LORCET, METHADONE, AND KADIAN, for example).

Most Drs will prescribe the ER (extended release) or CR (controlled release) versions of these narcotics for a more evenly distributed release of medicine during the day.

So what is the difference then between the OXYCODONE Branch and the HYDROCODONE Branch If you search the Internet here is what most of the double-blind studies show: OXYCODONE and HYDROCODONE are similar in analgesic effect, but OXYCODONE is generally as effective at 66% of the dosage of HYDROCODONE. Individual medications may vary and each patient will vary slightly as well but it gives you an overall idea.

ALSO INCLUDED IN THE NARCOTICS FAMILY IS FENTANYL, EITHER IN THE MORE COMMON PATCH OR THE LESS COMMON LOLLIPOP FORM, ACTIQ."

http://www.rsdhope.org/Showpage.asp?...5&PGCT_ID=3822

Search all over the home page of this site. I have found it very useful. Another one to review:

http://www.rsdconsultants.com/crps_abstract.htm

Sorry if any of these are repeats. I am so tired tonight I cannot think straight. I am very concerned about you, and want you to get proper treatment. I am finding that we must educate OURSELVES as much as possible about this disease because WE are our own best advocate.

Doctors really do not know much about this rare disorder. Many have never heard of it. Most have never actually treated it. I read somewhere that an "expert" in RSD (PT in particular) could be considered someone that had successfully treated FIVE RSD patients in their career. Think about that......only 5 in their whole career!!

Do not count on ANYONE treating you to know about or understand all of the intricacies of this disease. I carry a huge 3 ring binder filled with articles, my medical records, pictures, a calendar of symptoms, etc....to all of my doctor appointments. I keep brochures about RSD in there to hand out to nurses that have never heard of it. I spread awareness one person at a time.

Keep asking questions!! We're all in this together!! Take care!!!

Oh, and I promised the link about preventing RSD spread in future surgeries:


http://anesthesia.stanford.edu/pain/...%20Surgery.pdf

Bravery? My dear friend.....Nope. :) LOL It's called...you just get- used- to- it and- OMG -you've- changed- the- way- you- do- things- without- even- realizing- you've -done- it-and-then-cry-like-a-baby-when-your-whole-body-hurts-like-hades. *takes a breath* LOLOLOLOL Like going downstairs on your butt and going up them on all fours just to make absolutely sure you don't put a funny ha ha look I feel UP the stairs move. Which is funny because you don't really hurt yourself, unlike falling DOWN the stairs which could involve funny crunching sounds as bones start sounding like Rice Krispies. :eek: *laughing yet?*

My sincere hope for many is that it will NOT spread at all and they won't have the "joy" of the full body experience. Even though no one can imagine it, as with other things, you find out you deal with it just fine and it really isn't that big of a deal, comparatively speaking. To what, I don't know, but it sounds good. :D LOL

Lonehunter(love the name), I'm not sure what else to add because she*points to Mom* has said everything I would say! :p I'll add though....NO ICE EVER!!!!!!! I know I wouldn't have kept icing my stupid broken(according to the er just "badly bruised"hahahaha) knee umpteen times a day if I had known early enough. I think it's what helped keep my pain level in the stratosphere and maybe helped it spread. (I swear I could hear it going weeeeeeeee in there).

Hugs,

Karen

Hi MominPainRSD, Karen, and Lonehunter 21,

Wow, thank you so very much for all the research and helpful information. I'm going to get RSD folders to pass out too. Already have several.

Lonehunter 21-I had RSD following surgery and didn't know it. Got frozen shoulder and had pt to get motion back-100 treatments, yes, and 100 massage treatments just before the pt, which I paid for. Took meds before pt because of the pain..Shoulder surgery was recommended, but I refused. So glad now as it was 4 years before I was diagnosed RSD, which is now full body-12 years. Yes, it's not good, but I'm so grateful for what I can do, and I keep mobile thru dailey exercise and stretching, etc. Have an great Doc. and husband, daughter and son in law and of course all YOU GOOD FOLKS. Thanks for always being a friend. Take care, Loretta

Hey!!! You go down the stairs on your butt and up on all fours, too??? I have rug burn in places I haven't experienced since I was in my twenties (uh....we won' t go there!!). Problem is you can see our whole staircase from the huge window in the foyer and we leave the light on now so I can actually SEE the stairs. It's a cheap thrill for the neighbors who have now been able to cancel the Comedy channel on cable!!:blush:

And yeah.....how could I possibly have forgotten to mention "NO ICE"??? Glad you filled in that blank for me!! You've got my back, girlfriend!!!:highfive:

I live in a townhouse complete with private courtyard fence and we're at the back so our windows and such don't face anything but the bushes. :D If the neighbors are amused then well, add a little wiggle to your "step" for them! ;) ROFL I was actually kind of embarrassed about the way I had to navigate stairs at first, especially when my friend saw that "move" for the first time. She didn't laugh at all until I burst out laughing at myself! I know the way it looks and I don't give a rat's patootey! If it works, then go with it! :D

I've always got your back! :hug:

Hugs,

Karen