Hi All,
I have not been here for awhile as i have been busy dealing with my pelvic pain and shoulder pain. I am going to see two surgeons toworrow and next week regarding my pelvic pain and i want to alert them i have RSD. I read somewhere there are preventive measures prior and after surgery due to the possible spread of RSD resulting from surgery. Can someone direct me to these links?
Thanks,
Numb

Sure thing! They are here http://www.rsds.org/2/library/articl...ive/index.html

It's the 8th one down, CRPS and Surgery. This link is a Q and A that is also on rsds.org that should help. http://www.rsds.org/5/news/2005/reuben.htm

Hugs,

Karen

Hi There, I'm sorry to hear of your problems that could lead to surgery. I hope you don't have to have surgery.

I am recovering from a recent surgery I had to have on my rsd foot. I went to Germany because there is a 3 year wait list here in Canada. Following the surgery I was offer a continuous peridural catheter for 7 days. The peridural catheter access was directed to the sympathetic nerves of my left leg, but my pelvis was also numbed for the whole week.

This treatment is used in Germany as the Gold standard for newly diagnosed treatments with very good success rates. Since I have had RSD for 6 years they had little hope any long term relief, but we did decide to use it to try to prevent any futher spread. I seem to be doing well and the healing of the bones and wounds has been normal so far.

I do also have 800mg of lidocaine IV treatments normally every 3 weeks and my doctor here has agreed to do them every 2 weeks for the next couple of months. I also take extra vitamin B, C and fish oil to help with the healing process

Good luck with your appointments with the surgeons.

MsL

Hi I have been to Germany forthe coma treatment, I was wondering where in Germay you went for your surgery. They were so attentive to the protection of your nerve blocks to prevent spreading of your RSD. I was wondering which Doctor you had and if it was the same hospital. thanks, CZ

Hi CZ,

I was up in the North by the baltic sea in a small town called Schleswig. It is a regional hospital associated with a string of 16 based out of Hamburg. One of thier facilities is right on the sea in Damp totally dedicated to rehabilitation with a nice hotel facility for long term rehab spa treatments. I didn't have the money to go there too. I had a team the pain management team under Dr. Krugger looking after me in consultaion with the orthopedic surgeon.I think they practice very holistic medicine and are very progressive.

How are you doing following the ketamine coma treatment? I had a consultation with Dr. Rohr at the clinic in Saarbrücken a couple of years ago. Is that where you had your ketamine treatment? He recommended that I try lIV Lidocaine before the coma ketamine treatment and I'm happy he did because overall it has made a difference. If I get to the point where the rsd spreads further especially if loose my mobility, I'll be on the plane quicker than one can blink to go get it done. Do you have to go for follow up treatments?


MsL

Hi Karen and MsL,
Thanks for your reply! I am back from my consultations. I had a nerve block bilaterally on my buttocks to rule in or out the pudendal nerve. No sedation was given because the doc did not want the sedation to mask the response. It hurted so bad and now one side of my pelvis is worse than before. I hope i don't contract RSD in that area. I am not sure whether or not i will be a good candidate for the surgery per his criteria. He is using a pain pump after the pudendal nerve release surgery for 10 days for his patients. He said it has made a difference in term of the success rate for his patients as the majority of them have had the pain for years. However, he has never operated on RSD patients.

MsL-
Can you explain what is peridural catheter and where do they put it and with what medications? As i understood, you had a foot surgery and that was what they did on you to prevent any spread of RSD. Can you clarify what is their gold standard to treat RSD? How did you find them and did you self referred and how much it cost for your treatment? You also mentioned that you will be able to access to coma katemine infusion if needed in future. Are you on the waiting list? I want to get myself on the waiting list because my RSD has spread earlier from hands to feet and maybe to my whole body.

Take care,

Hi Numb,

I will try to explain this as best I can as a lay person, I hope it makes sense.

A peridural catheter is similar to an epidural. The difference is that the needle of the catheter is slightly bent and when it is inserted it accesses the sympathetic nerves at the side of the spine. Mine was inserted in the lumbar area where I used to to have lumbar sympathetic blocks, I think that is around L12 but I'm not certain. Initially when the catheter was inserted it veered off to my my right side, so they had to reposition the catherer a second time. Unlike a lumbar sympathetic block they did not use an x-ray to verify the position. I found it interesting that the same amount of medication that paralyzed my right leg barely affected my left side, it just took the pain a way and I was able to walk (with assistance in case I fell) for the week. The medications that were used was Bupivacaine 0.25 %, Sufantanyl 25Ml (opiate) and sodium Chloride 0.9%. The maximum flow was 6% but they kept me at 5% so I didn't loose control of my bowl function. As I mentioned my whole pelvis area was numbed during this treatment. I don't know if this is right for you under your circumstances. It cost us 4,000 Euros plus travel costs, fortunately we were able to use points for the flight. The hospital was fantastic, more like checking into a very sanitized spa hotel. They keep sparkling mineral water (flat if you prefer) at your beside and have beautiful crisp white cotton linens and European duvets. They have lots of nursing staff and the nurses aids are either 1st year medical students or doing this in lieu of military service. It is very impressive.

What I meant by "gold standard" is that this is the preferred standard treatment used by doctors their for patients that are newly diagnosed with rsd. The earlier that it done the better success they have. To access the sympathetic for upper extremity rsd they go through a vein in the neck or somewhere in the the armpit . I asked about that because my rsd has already spread to my left arm too, although still somewhat mild.

I am lucky in that my husband is German and he was able to translate everything for me. He knows the orthopedic surgeon personally so he emailed him and explained my situation along with my x rays of my foot. The surgeon offered to remove the screws from my foot and did not charge us for that procedure. He introduced us to the pain management team and the anesthesiologist at the hospital when we arrived. They do not have wait lists and frequently take private patients from Denmark since it is so close to that country. It was a big deal for them to have someone come all the way from Canada and the local newspaper cam and interviewed me.

I see from another post of yours that you have an appointment with Dr. S. in Philly. If I were you I would absolutely keep that appointment! As other say Dr. S is the "Expert" in North America. He can make the referrals that are appropriate for you. That being said I did go directly to Dr Rohr who Dr. S works with in Germany in conjunction with the Ketamine coma treatment. At that time Dr. Rohr told me that I had the potential to become full body rsd. He said that he could refer me to Dr. S if I did not want to go through with the ketamine treatment. He said in all likelihood Dr. S would recommended I first try the IV lidocaine. My husband translated the consult report and rather than going to see Dr. S in Philly we gave the consult report to my PM doctor locally here. My PM doctor has been giving me the lidocaine IV treatments ever since. As one person recommended Dr. S can work in conjunction with your local PM doctor.

That all being said if you want any information or contact numbers to the doctors in Germany I'm happy to forward it to you. As I mentioned language can be an issue as I only speak a little German. Without my husband it would have been difficult for me. Many of the doctor & nurses do speak English but I could sense their relief when they realized that my husband could translate for me.

I hope you are feeling better today.

MsL

MsL,
I want to thank you so much for your detailed reply. I just post my decision re: Dr. S appt. I had decided to keep it after talking to my husband. I think i am heading to the right direction. I think traveling to Germany will be difficult due to the language barrier and costly for me.
Take care,
Numb