Rsd
 

I am hoping someone can help and explain Rsd questions.

Had Surgery both feet at the same time Nov.2009 Heel spurs and plantar fasciitis. Since June I had 9 shots in my feet and one in each ankle for a total of 11. The last 4 was after surgery. I told her I was getting worse. I was on steroids 3 times. 3 month of diclofenac.after surgery. Pain pills non stop. After surgery I told her when I went back that my feet really hurt, the heel are numb and I am in worse shape since the surgery. She said she was no worried about the numb feet. So she sent me for a nerve and muscle test. They came back that I had a problem. The neuro. said I had tarsal tunnel and it was her problem. So I went to her more shots and pills. But I was not happy with her so I changed to a new foot doctor . He is now running blood test and sent me for a bone scan. I had a copy of the bone scan sent to my house, It said I should follow up with RSD.

So I'm taking ultram and it is not working at all. The pain and swelling plus the burning is in both of my feet and ankle area. Since the nerve test my right thigh will not stop burning. I was wondering if I had surgery some time in the future will it start burning and swelling there also. Or if i get any type of injury will it spread?

Hope I get answers from the doctor on Wednesday. But I thought I might get help from people who suffer my RSD.

!2 years ago I had surgery the accessory nerve went crazy. It was shoulder surgery. It made my neck pull to the tight they did say rsd. They also said dystonia. I have been going to a chiro. for many years. He seems to help.

That problem seem to slow down but I'm worried if it will once again act up. It has always bother me like a tooth ache. But you go on. But the feet it is harder because I need them to walk. What are the best pills?
:confused::mad:

Rsd
 

I also have RSD that began by having surgery for bilateral hammer toe's. The Surgeon cut thru the nerve on my small L toe,from then it spread up my left leg,then to the R side. Now it is all over my body. Has your Neurologist given you an EMG? I really cannot tell you what meds will work for you,because everyone is so different.The first thing that I did when I wanted information about RSD was to just type into my computer (What is RSD?) You will find alot of information there. Also just by reading alot of the post's on the top when you sign into this sight. If you what to talk more please feel free to pm me! Welcome to this warm and loving group here! Breezy55 :hug:

I have nerves in my feet that have a problem. The nerve function should be at a six the neuro said it is at ZERO. Did the doctor who cut on my foot do the damage or was it just bad luck. Either way I will never get the answer.

Hi Nanapickle, I'm sorry for your situation. It sounds like you are saying you were diagnosed 12 years ago following shoulder surgery. Rsd can calm down or even go into remission, then with new injury, surgery, or even an injection or blood draw, it can cause it to come out full blown.
It's always recommended to never have surgery after being diagnosed with RSD, unless life threatening. If absolutely necessary, there are preventive procedures, which RSD specialists work with the surgeon ahead of time.
It sounds like you are having symptoms of RSD arise following the surgery.
You definetly want a RSD Dr. to treat you. You can go to RSDSA.com and put in your zip code for close RSD Dr. or support group, A good site with lots of questions 146- and the Dr. answers is rsdrx.com Go to puzzzles list. Dr. Hooshmand spent 40 years in rsd and is now retired, but has his website up and also a referral to another Dr. in Florida.
Let us know how you are doing. When I was diagnosed in another state, I came back to Arizona and found good neurologist and good orthopedic dr. who had a physical therapy group that knew RSD. It's been 15 years and have use of both feet and one hand and 50% use of other hand. A couple years ago, my toes started curling up off the floor, my neuro gave me exercises to do everyday in the pool and after 4 months, they were touching the ground again. I'm very grateful to have full use of my feet. The one hand had wrong diagnosis and delay of pt treatment. For me, massage therapy was a lifesaver to my limbs and body. Also very important is desensitization.
Take care, one of your new friends, loretta with big soft hugs:grouphug:

Hi Loretta, thanks for the information that you gave me. You said that your toes curled up and didn't touch the floor. The Dr. wanted to know why my toes were pointed up. My husband said that my toes point up. My sister illaw tried it and said she couldn't even get them to do what my toes do.

Another question, when I drink something cold with ice , it is like brain freeze when you eat ice cream to fast. Has anyone had this problem?

Dear Nanpickle -

Sorry to hear what you're going through.

I totally agree that you should see a pain specialist ASAP, although I am not aware of any search engine for RSD doctors on the RSDSA site, as Loretta suggests. (More on the RSDSA below.) The best "doctor finder" I know of, showing the names, addresses, etc. of those pain management specialists who have been board certified by the American Board of Pain Medicine (ABPM), the group that oversees all pain management fellowships in th U.S. (And it's a certification that is only given after the doctor completes a formal residency or fellowship in pain medicine and then sits for an 8 hour written exam. This is in contrast to another "certifying" organization that requires no formal training in the field.) This link lays out who they are http://www.abpm.org/about/index.html and here's their search engine http://www.association-office.com/ab...dir/search.cfm Just fill in the blanks and go. For RSD, I would lean away from someone with a background in physical medicine, in favor of someone coming out of neurology or anesthesiology. That said, there no guarantees on bed-side manner. :winky:

When you do see a pain specialist, I would strongly urge you to raise the subject of commencing a series of lumbar sympathetic blocks as soon as possible, when all evidence indicates that a sustained course of blocks (injections of a local anesthetic and possibly a steroid, under fluoroscopy) matched with coordinated PT - working you the hardest the day after a block - can provide sometimes permanent relief if (and only if) initiated within the first six months or so of the time the pain first set in. The Reflex Sympathetic Dystrophy Syndrome of America (RSDSA) is an excellent source of information, http://www.rsds.org/index2.html with has a nice little article for patients, Clinical Q & A: Can there be too many sympathetic nerve blocks for the treatment of CPRS? by William E. Ackerman, III, MD, RSDSA Review. Winter 2008 at http://www.rsds.org/1/publications/r...inter2008.html

Similarly, you should be aware that one of the most important treatments out there right now (and becoming more widely available) is the “low dose” or “sub-anesthetic” iv infusion of an anesthetic called ketamine. For a good general discussion of the topic, again written for the layman, check out Overview of Ketamine Infusion Therapy by Philip Getson, DO, RSDSA Review, Spring 2006, Updated October 7, 2008 at http://www.rsds.org/3/treatment/ketamine.html I would also urge you to consider the possibility of getting “low dose” ketamine infusions sooner rather than later, where there is at least a strong suggestion in the literature that people are more likely to go into essentially permanent remission, as opposed to relief for a few months, if they begin treatment within a few - say 8 - months after being afflicted, but in any event before it's spread to any other sites on the body. Kiefer RT, Rohr P, Ploppa A, et al, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients, Pain Med. 2008;9(1):44-54, 51–52, FREE FULL TEXT at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf:

Correll and colleagues reported significant pain relief in CRPS patients after prolonged infusions of subanesthetic racemic ketamine [12]. All of these reports suggest that ketamine may be more effective in earlier and more localized CRPS. A systematic investigation of the analgesic potency of ketamine for severe, long-standing, spreading refractory CRPS has not been reported. We sought to investigate this question with this pilot study. After completion of a series of four patients who showed no clinical or positive response by quantitative sensory parameters, the investigation was terminated. The discrepancy of the therapeutic efficacy of ketamine in different groups of patients might be explained by the degree of severity of the CRPS that they suffer. Our patients had either long-standing and generalized CRPS or a rapidly spreading form (one patient). All of our patients had failed numerous standard treatments. The extent of prior treatment in the previously reported trials has not been reported in detail. In Correll’s study, CRPS was of relatively short duration (8 months or less in 20/33 patients), which suggests that these patients were less severely affected than those comprising this series.

* * *

The importance of the time of administration of ketamine and its effect on pain is suggested by the success of memantine and ketamine in reducing phantom pain if given perioperatively but its failure to modify established pain [30–32]. The effectiveness of ketamine in early vs established long-standing CRPS pain has not been studied by randomized controlled trials.

Notes
12 Correll GE, Maleki J, Gracely EJ, Muir JJ, Harbut RE. Subanesthetic ketamine infusion therapy: A retrospective analysis of a novel approach to complex regional pain syndrome. Pain Med 2004;5:263–75. [FREE FULL TEXT at http://www.rsds.org/2/library/articl...20ketamine.pdf]

30 Kiefer RT, Wiech K, Topfner S, Unertl K, Birbaumer N. Continuous brachial plexus analgesia and NMDA-receptor blockade in early phantom limb pain: A report of two cases. Pain Med 2002;3:156–60.

31 Kiefer RT, Wiech K, Dieterich HJ, Birbaumer N, Unertl K. The NMDA-receptor antagonist memantine for prevention and therapy of phantom limb pain. Anesthesiology 2003;A:1009.

32 Dertwinkel R, Heinrichs C, Senne I, et al. Prevention of severe phantom limb pain by perioperative administration of ketamine—Results of a pilot study. Acute Pain 2002;4:12–6.

And don't believe any scare talk about ketamine being a neurotoxin. I am advised that there hasn't been one reported case of neurotoxicity in the medical literature for over 30 years!

Believe it or not, seeing a good pain specialist, this early on in the course of your illness will make you more fortunate than many. Good luck!

Mike

fmichael...

Do you have any experience in SCS? Or trials? JHU wants me to be their trial on the benefits of SCS and install a trial on April 16. I need to meet with them four times in a 16 week period. I am the first candidate. Any advice?

Dear Kim -

No personal experience, sorry. I never got beyond a TENS unit myself. And from what I understand, they stop working for everyone in about 3 years or less and have to be taken out. Some much sooner. The only really good thing I've heard about them is that in a Sandinavian study, they were able to put kids into complete remission with them, but if anyone is going to come out of this, it's usually a kid anyway.

If you use the search function looking for thread with SCS in the title, I'm pretty sure you'll pull up a boatload of experiences.

This is a study you may want to look at, van Eijs, Smits H, Geurts JW, et al
Brush-evoked allodynia predicts outcome of spinal cord stimulation in Complex Regional Pain Syndrome type 1, Eur J Pain. 2009 FREE FULL TEXT at http://www.rsds.org/2/library/articl...JPain_2009.pdf in order to see whether you may "fit the profile."

That said, I seem to remember seeing something about how the folks at JHS were using SCS to advance an "on/off" paradigm of CRPS but I can't find it off hand. I'll let you know if I do. Good luck!

Mike

Dear Nadapickle
Im sorry to hear about your condition,,all the advice from everyone above seems to be a very good course of action,,,Sadly,,it does sound like the ssigns of RSD,,,and as everyone has said,,its crucial to get on it now,,there are alot of avenues to go,,as mike said and others,,try the blocks,,and as for the meds,,,everyone is different,, also remember,the bone scan,is a diagnostic tool,,but there are alot of different readings on a bone scan that the DR looks at,,,loss of bone density and atrophy and hot spots,,,but theres also a grph on there to ,that I [think] shows something to do with the spread that they look for on the legs,,if your doing a lower scan,,I had one done,but i forget wgat he mentioned about those reading,,,Theropy is a great tool,,but it appears in your condition ,that is hard to do,,even if you can wiggle or do ankle pumps,,I pray that you get relief,,,it sounds like your still in a acute stage from nov 09 . RSD wise and surgery wise,,,Please let us know how we can help,,and dont be afraid to ask anything