[numb]

Hello Everyone,
I have RSD in my hands/arms, feet/calves for more than 2 years now. I tired a couple of sympathetic ganglion and lumber blocks and oxygen therpay. I had some relief for a few day at best from the sympathetic nerve blocks. I had very good relief from the oxygen therapy for a good period of time. For now, I have managed my pain with medication, mainly Lyrica. My pain is manageable. Should i stop trying other invasive procedures or continue to pursue other treatment options hoping for a remission?
Have anyone try other types of nerve blocks such as cervical/lumbal epidural, caudal, paravetebral or brachial plexus blocks containing local anesthetic and corticosteroids. I got this information from an article written by Hooshang Hooshmand, MD and two other doctors. If you have tried these options, would you please share your experiences.
Take care,

[loretta]

Originally Posted by numb

Hello Everyone,
I have RSD in my hands/arms, feet/calves for more than 2 years now. I tired a couple of sympathetic ganglion and lumber blocks and oxygen therpay. I had some relief for a few day at best from the sympathetic nerve blocks. I had very good relief from the oxygen therapy for a good period of time. For now, I have managed my pain with medication, mainly Lyrica. My pain is manageable. Should i stop trying other invasive procedures or continue to pursue other treatment options hoping for a remission?
Have anyone try other types of nerve blocks such as cervical/lumbal epidural, caudal, paravetebral or brachial plexus blocks containing local anesthetic and corticosteroids. I got this information from an article written by Hooshang Hooshmand, MD and two other doctors. If you have tried these options, would you please share your experiences.
Take care,

Hi numb.
I'm sorry you have RSD, I'm sure you will get some comments on your question. I wasn't diagnosed for 4 years, my treatment before I was diagnosed for frozen shoulder (really RSD) was physical therapy and massage therapy, tens unit, I went into remission twice-now full body-14 years. My Dr. just built two clinics with HBOT? Is that what you had Hyperbaric Oxygen ? I'm planning on having a series done/ I've been seeing him for 5-6 years. He is neurologist, psychiatrist and pharmacologist.
I almost went to see Dr Hooshmand about 8 years ago. I often refer his puzzle list to newbie's. Thank you in advance for answering my question about your oxygen treatment and how many sessions did you have? and length of time. Take care, loretta

[numb]

Loretta,
I had a total of 50 sessions ( 2 series) of hyperbaric oxygen therapy. I had my first 30x within months after RSD dx and i had significant relief. Then i had my second 20x early this year because my RSD had flared up after a very painful nerve block done in my pelvic area in 10/08. However, i did not obtain the same good result as the first time although i still had good relief. My ears could not tolerate the pressure the second time and thus i had to have ear tubes put in before proceeding the therapy. The tubes affected my hearing and i had a lot of ringing in the ears. After the oxygen therapy, i decided to remove the tubes. Unfortunately, the benefit resulted from the second set of oxygen therapy was pretty much erased by a moderate impact car accident. It was a hit and run because that young man with no insurance. I was so...... upset. I don't think i can afford anymore hyperbaric oxygen therapy anymore. I have a installment plan set up to pay for this. The doc who prescribed the oxygen had mentioned there is a maximum sessions he would prescribe due to the side effects. I think he mention he would only prescribe 50x.
I hope this help,

[Mslday]

Hi numb,

I had a continuous peridural block after I had surgery in Germany on my RSD foot that was mean to remove offending screws from a badly botched bunion surgery.

I'm a lay person so I hope this makes sense but in essence the concept is that they accessed my sympathetic nerves from the peridural colum in my spine with a catheter, and injected and numbed my leg from my hip down for 7 days after I had some metal screws removed from my rsd foot. The catheter 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. Because I had the rsd already for 6 years at that point they were doubtful I would find any any long term relief. The good news was that they did however think it would help to prevent the RSD from spreading or getting worse from the surgery which is a huge risk. They kept the medication modified so I would could still manage to walk (only with assistance) and not loose my bowel functions. Both doctors and nurses were surprised I had not been offered this treatment here in Canada when I was first diagnosed. Apparently it's a gold standard treatment for newly diagnosed RSD patients in Germany. That knowledge after the fact sent me into depression for some time.

I was taken to a small a regional hospital in a small town in the north of Germany called Schleswig, close to Keil where one of the top world renowned RSD researcher works. My husband has met with him and they keep in regular contact now. All the medical staff at this small regional hospital were very well versed in RSD as a result of this affiliation with the Kiel University. We paid privately or I should say my husband paid because I'm not working currently. It was his connections that got me there and he took me to the best. The local paper came to interview me because they were so impressed that I would come all the way from Canada for treatment but as always they over blew the realities of the treatment. It was more about publicity and promotion for the hospital and the headlines were over-hyped about my "cure".

The good news was that I did not have any nasty RSD spread so I think in essence the results were a success. Surgery on an RSD limb is possible despite what my Canadian doctors dreaded, and their fear of the unknown that denied me the possibilities of a quick recovery from a bad surgery gone wrong.

I know this doesn't answer your question and I don't know all of your particulars but it's sound to me like you may have centralized RSD. Try to find someone who fully understands how to treat you from that perspective.

Hoosman stuff was ahead of his time and he was great but it is dated now. He is formally retired so look for doctors who are currently in practice and up to date on the latest research. A good starting point being in the USA is RSDSA.org, contact Jim Broach if you get stuck.


I wish you well

MsL

[numb]

Mslday,
Thanks for your reply! What do you mean by centralized RSD? Does it mean the full body RSD? Do you know whether or not the US doctors offer the peridural block? May i ask what was your cost for the peridural block in Germany? How is it different from Katemine infusion?
Please inform,

[Sandel]

Hi Numb,
Blocks.. I have only had lumbar sympathetic blocks, started too late to put me into remission too, they did help to relieve some of the bone crushing cold that was taking over my right leg though.. it was hypothermic cold.. now it is just cold alot, but nothing like before the blocks.

LSB's started at 9 months post RSD, stopped at 12 months.

But wow for a few months after they stopped the blocks my right foot was staying VERY hot, it had caused what another doctor called a virtual sympathectomy from too many blocks, though it didn't last too long and came with it's own set of problems.

Mslday hi,
I have never heard of that (German) treatment for early RSD and I too am in Canada.

They have alot of treatments that I would love to have here.. have you looked at parkcanada's website? they have alot on Dutch/German research and treatments.. I go there and sigh with envy.. I would probibly not be in the shape I am in today if I lived there I think.

I am also very glad it helped prevent spread during your surgery.

be well all,
sandra

[Mslday]

Originally Posted by numb

Mslday,
Thanks for your reply! What do you mean by centralized RSD? Does it mean the full body RSD? Do you know whether or not the US doctors offer the peridural block? May i ask what was your cost for the peridural block in Germany? How is it different from Katemine infusion?
Please inform,

Hi Numb,

I use the term centralized because I think it better describes the progress of the how RSD seems to manifest in many of us. I have a friend here who has been seeing Dr Schwartzman for a few years now and he diagnosed her as having centralized CRPS. It was because of her relationship with Dr. S that our doctors here in Vancouver set up the protocols and started giving lidocaine infusions to many of us RSD patients.

I honestly don't know what people mean by full body RSD as I've never come across any literature that explains what full body RSD is. If I had RSD all areas of my areas of my body I might describe it that way too. The latest information I came across seems to support my understanding of what happens as our disease progresses. I believe that there is a centralization of the pain that occurs in most of us probably right from the beginning. The RSD manifests itself differently in each of us depending on many many individual factors.

Here are a couple of quotes from the most current copy of the Medifocus Guidebook on Reflex Sympathetic Dystrophy:

Reflex sympathetic dystrophy appears to be a combination of both the sympathetic nervous system as well as other systems such as peripheral, central, immune, and vascular. In effect, what may be happening with RSD is that a vicious cycle is created: the sympathetic response leads to chemical
changes which then activate the response of other systems (e.g., central nervous system) which leads to more pain, which leads to more chemical changes, and so on.

In short, it appears that the pain of RSD is not related to an overactive sympathetic nervous system, but rather, reflects a more global involvement including:
• Peripheral nervous system
• Sympathetic nervous system
• Central nervous system
• Vascular system
• Immune system
• Inflammatory responses

The continuous peridural block I had for 1 week is very similar to a continuous epidural block, it's covered under regional anesthesia so I'm sure there are many well qualified doctors in the US who know how to do them. The question is do they perform them specifically for RSD/CRPS patients experiencing chronic pain. I was told that this is a gold standard treatment for newly diagnosed patients in Germany but I've never come across any translated research to qualify that statement made by my doctors. Just to be clear there was no doubt that the peridural block would provided me with any long term pain relief because I'd already had RSD by 6 years at that point (despite the fact that I hoped it would), it was specifically given as a precaution to help prevent further spread of the RSD following my surgery.

How is that different form Ketamine you ask? I'm just a patient like you so I may have this wrong but from what I've read and experienced so far this is how I understand it.

Ketamine belongs to a class of drugs that is a sodium channel blocker, the preferred method of delivery is intravenously in various doses depending on weather they keep you awake or put you in the coma. Lidocaine is also a sodium channel blocker and Mexiletine is the oral version of lidocaine. Many people seem to do very well with sodium channel blockers. It's the hot topics amongst many researchers and in Kiel they've been studying the sodium channels in the skin of RSD patients.

Personally until now I have done very well with Lidocaine infusions every 3 weeks or so for the past few years. I prefer IV infusions to the subcutaneous delivery method but most people seem to do well on the subcutaneous treatment option.

The continuous peridural block is a local anesthetic delivered through a catheter that is positioned either in the neck or positioned just beside the spine. The exact position of the catheter depends on whether you are blocking an upper or lower limb. The risks of infection can be high with this type of catheter and complications can be serious. I was lucky that nothing bad happened except for some allergies to medications prescribed to me orally after the fact. The hospital protocols there are superior to anything I've ever experienced so i would go back in a heart beat. Plus the German food is a real delight from the rubber food served in our hospitals here. It's real healthy food.

We paid the hospital about 5,000 Euros for a week long stay, not including the actual surgery, which really was a minor procedure just to remove screws that could normally be done in an out patient clinic, that was additional. Plus our travel costs and we were well into about $12,000 CND.

I'm a bit tired tonight so i hope my answer makes sense.

Hope you are doing well.

MsL

[Mslday]

Originally Posted by Sandel

Hi Numb,
Blocks.. I have only had lumbar sympathetic blocks, started too late to put me into remission too, they did help to relieve some of the bone crushing cold that was taking over my right leg though.. it was hypothermic cold.. now it is just cold alot, but nothing like before the blocks.

LSB's started at 9 months post RSD, stopped at 12 months.

But wow for a few months after they stopped the blocks my right foot was staying VERY hot, it had caused what another doctor called a virtual sympathectomy from too many blocks, though it didn't last too long and came with it's own set of problems.

Mslday hi,
I have never heard of that (German) treatment for early RSD and I too am in Canada.

They have alot of treatments that I would love to have here.. have you looked at parkcanada's website? they have alot on Dutch/German research and treatments.. I go there and sigh with envy.. I would probibly not be in the shape I am in today if I lived there I think.

I am also very glad it helped prevent spread during your surgery.

be well all,
sandra

Thanks for the reminder to head back to the Parc site. I haven't been there for a while. Did you check out the link to the dutch Evidence Based Guidelines Development (EBGD), Guidelines on Complex Regional Pain Syndrome type I (CRPS-I) dealing with the diagnosis and treatment of CRPS-I. http://pdver.atcomputing.nl/english.html

Amazing information all in one spot isn't it? Have you tried DMSO cream they recommend? I'm curious if it's available here?

Hope you are doing OK with our recent days of blustery rain.

MsL

[numb]

Mslday,
Thank you for taking the time clarifying things. I need to quit because my wrists are hurting.
Numb