Hello. I am writing to see if by chance some one may be able to help me.

I have been diagnosed with RSD or sometimes referred to as CRPS I in my right lower extremity. I had tore a tendon in my ankle in January of 2007 and have inquired it a few times since. I was diagnosed in May of 2008. I lost all ability to move my toes in late March.

Since the diagnoses I have had 3 Sympathetic Nerve Blocks. Have an endless pharmaceutical of pain, nerve, seizure and blood pressure (for circulation) medicine. I have reached a medical gridlock. The Pain Clinic states that I need to have surgery to fix the tear in the tendon to releave some of the pain to lessen the RSD. The surgeons are saying that I can not have surgery do to the RSD or I need to go 6 months with no symptoms then they can review me for surgery. I even went the the University of Iowa's Pain Clinic in July of 2008.

The University of Iowa stated the I could not have been diagnosed since I had not had surgery on my foot yet.The little mobility of my ankle has deteriorated, have lost ability to walk or sit for any length of time over a half hour. I went to a Neurologist whom did an EMG and confirmed that it was not a pinched nerve but the RSD and tear in the tendon.

The Neurologist referred me to the Mayo Clinic in Minnesota and they will see me but it is a 6 to 8 month wait. I am not sure if I can really wait that long as things seem to have progressed quickly from bad to worse; as since Mid- July I have been unable to work and totally disabled by my Neurologist.

I am hoping if you are reading this and familiar with this that you might have some advice for me. Also if you are familiar with a Doctor or Clinic that has a helped in treating this. I live in the state of Iowa but am willing to travel if needed but if can stay close by that would be great with the cost of expenses.

As I write this, I am being sent back to an Orthopedic as my Neurologist feels that is the next step since this is not Neurological but the tear and RSD causing the problem given the length of the wait to get to the Mayo Clinic.

Thank you for taking the time to read this. Also I appreciate any help or advice I can get as I feel like I am on a road that is fairly dark and being passed around from one doctor to the other.

Feather....I haven't posted in over a year but when I saw your post I had to respond. Our stories are so similar. I fell on ice about 3 years ago and broke my ankle, suffered a third degree sprain and tore a tendon. The bone healed, the sprain resolved but the torn tendon remains. Like you, I've been told by 3 ortho docs that they could not touch the torn tendon unless the RSD resolved. I've done extensive research on the subject and it seems that what the orthos are telling me is accurate. They also told me I had only 2 years to have the tendon fixed otherwise they couldn't do it. It's been 3 years now so I've lost my window of opportunity but I hope you have better success. Have you had any nerve blocks yet? I had 2 in the beginning of this and while they didn't make the rsd resolve, I do believe they slowed down its spread. Like many here I've tried different meds but none have dulled the pain enough to be able to walk. What has helped me the most with the pain is a leg brace also known as an AFO. I use this along with a cane...without it I can not walk because of the pain. I would look into the nerve blocks. Most pain clinics do them. In the meantime if you are having trouble walking your ortho doc could give you a walking boot or send you to be measured for an AFO (ankle foot orthodic) Where do you live?
I hope this helps a little...at least it's a place to start. Please let me know how you make out.....Jeannie

Hi Jeannie. As for the nerve blocks I have had three Sympethiact Nerve Blocks in the time from the end of May to the begining of July this year. They helped with improve the tempetaure and dull or slow the pain for a while. I found that they helped because for a while there the air was burning my skin. I use crutches to walk mainly, sometimes I will try and walk with out it since I have been told that if you don't use it could lose the abilty to.
I am really not able to walk or sit for more than about an hour because of the swelling increases the pain. The problem is when I do try to walk my ankle has something pop in it and then it swells for days and bruises.

I am so glad you replied it helps to have someone who understands.

Feather

[QUOTE=Feather;362628]Hi Jeannie. As for the nerve blocks I have had three Sympethiact Nerve Blocks in the time from the end of May to the begining of July this year. They helped with improve the tempetaure and dull or slow the pain for a while. I found that they helped because for a while there the air was burning my skin. I use crutches to walk mainly, sometimes I will try and walk with out it since I have been told that if you don't use it could lose the abilty to.
I am really not able to walk or sit for more than about an hour because of the swelling increases the pain. The problem is when I do try to walk my ankle has something pop in it and then it swells for days and bruises.

I am so glad you replied it helps to have someone who understands.


Hi Feather and Welcome, It's unfortunate you found 'us' other RSD friends, because that means you have been diagnosed too. You'll find a vast amount of knowledge, experience, and compassion here. If you could spend some time reading other posts, like the introductions, and pictures, you'll find out how to compare your experience with others, and maybe what has helped others and what has further increased pain and spread of RSD. It's the usual consenus, that if you aren't diagnosed within 6-12 months and have the blocks, there is less of a percentage to have a remission. Children have a better chance of remission than adults. The purpose of the blocks are to interrupt the pain signals to the brain and reset or stop the pain signals. If it doesn't happen with that period of time it usually doesn't stop. Were your blocks lumbar blocks? I've always understood if the RSD injury site is below the waist you have lumbar blocks, if it's an injury in the upper extremity, you have the stellate ganglion blocks (neck) Mine began in about 96 following breast surgery. The next day my arm swelled up and was painful. After removing the excess fluid 2 or 3 times, they sent me to rehab Dr to oversee my physical therapy for frozen shoulder. After about 100 therapies I got the use of my arm back, about 95% It wasn't labeled RSD, but really was. About half way thru therapy, they wanted me to see a ortho surgeion who wanted to break the shoulder area. I said no, I'll just stay with phsio, which was really torture, being strapped down to a table and manipulated. I went to massage therapy before had to get warmed up, (which I paid for) and that helped a lot. The therapist said it was very possible for it to go to the other shoulder- that's called mirror spread. We moved to Arizona and that's exactly what happened. Went into therapy again, and was much shorter length of therapy. Had about a year relief, and then felt a nerve pull in my left hand while water skiing. Hand swelled up bad and stiffened up like a board with no So flew to a sports injury ortho group in Eugene, Or where we were from, where the Olympic Trials were held for track and field.The hand Doc. diagnosed RSD in less than a minute. Comfirmed at the hospital with Nuclear Med tests.You get bone loss in the RSD site. When back to Arizona and saw a Neurologist and Orthopedic Dr. More confirmation and got partial use of my fingers back thru physical therapy. I can partially bend my fingers kinda like a claw, but at least I can cut my own food, and peel a potato. By putting my hand thru different textures, the fingers got desensitized. I would think the same thing would apply to your toes. Everyone says surgury is the worst thing you could do, making it worse. Like a lot of people here on this forum have had happen to them, my RSD spread full body. My toes started to curl up and my Dr. had me do exercises in the pool and after a few months they touched the ground again. Stretching is good exercise. My Dr. is a Neurologist, Degree in Pharmacology to manage the pain and spasms, jolts, stabbing pains, and I've had one bad seizure. He is a Psychiatrist, who has really helped me a lot with the depression and adjustment to loss of your health life to what is now. There was a study on Ketamine for RSD here in Scottsdale Mayo Clinic. A friend of mine worked with these 5 Drs. Two of them are now at the Hershey Hospital in Pittsburg, One went back to Germany. Ketamine is an anesthetic that induces a close to going under that helps some people break the pain signals to the brain. It's not a cure, Gives some people relief for different time lengths. I'm so sorry you have this, you'll find a lot of support and caring friends here. Hope this helps a little. Loretta

[QUOTE=Feather;362628]Hi Jeannie. As for the nerve blocks I have had three Sympethiact Nerve Blocks in the time from the end of May to the begining of July this year. They helped with improve the tempetaure and dull or slow the pain for a while. I found that they helped because for a while there the air was burning my skin. I use crutches to walk mainly, sometimes I will try and walk with out it since I have been told that if you don't use it could lose the abilty to.
I am really not able to walk or sit for more than about an hour because of the swelling increases the pain. The problem is when I do try to walk my ankle has something pop in it and then it swells for days and bruises.

I am so glad you replied it helps to have someone who understands.

Feather[/



Hi Feather, In your post you don't mention physical therapy. Have you tried that yet. It's usually the first thing they try around here. A good therapist will work along with your ortho doctor and if they feel some type of orthodic will help you they will get it for you. Also, have you tried a TENS unit. Some of the nice folks on here have had relief from using them. You are right that it is important to try to use the RSD limb. I give it a try every AM and every Pm for a half hour at a time. It doesn't make it any better but I like to think that it keeps it from getting worse. The rest of the time I use my brace and my cane to cover short distances and my scooter or wheelchair for longer distances . Don't overdo it though. I find that when I push too hard the pain increases and becomes hard to take. Hope this helps a little..Jeannie

[QUOTE=used to be;362998]Hi Jeannie,

I keep asking about physical therapy and have been of no success in recieving any; keep getting told that there is not a lot to be done. Finally in August I decided I need to at least do some minor strechting and non-standing excersise. I figured I need to do something to slow down the muscle mass that I have started to loose in my calf and thigh. I am not sure what a TENS Unit is could you please enlighten me? I am going to the pain clinic sometime this week and my Ortho in 2 weeks. This way I can ask them about these things. I know that my Ortho has not worked with RSD before, I was sent to him to see if he would do surgery thankfully he said no not possible. After the short term working of the Sympethicat Nerve Blocks ( Lumbar) I was trying to see if I could do Ketamine, instead was refered to a psychologist for Bio-feedback whom told me that she did not think I was in bad enough pain for that. The other day I spoke with someone who said she did warm water therapy an that it helped alot.

Have a wonderful day.
Feather

[QUOTE=Feather;363499]




Hi Feather,......A tens machine is used to deliver a small electrical current to the injured site through electrodes that are placed on the area. They are used most commonly by physical therapists and chiropractors but you can get a smaller version for home use. I tried the warm water therapy in a heated pool as well. It does allow you to exercise the limb with far less pain but as soon as I got out of the water the pain crept back in and by the time I made it to the changing room I was right back where I started from. But I didn't try it until a year after the injury so you may have better results. Hope this helps...........Jeannie

Feather, six to eight months is far too long to wait. Look up Dr. Michael Stanton-Hicks at the Cleveland Clinic. They are very experienced in CRPS/RSD at the Cleveland Clinic and will help guide you to in deciding on the best treatment plan of action. I have CRPSII in my arm due to a failed ulnar nerve surgery that impinged my ulnar nerve farther up the arm. I had a second surgery five months later that spread the RSD but improved the burning nerve pain in the compressed area of the nerve. Had I known about Cleveland Clinic at the time, I would have gone there for help and would have had my second surgery there. They have a team in place that can use the proper blocks, etc. if a surgery is critical to your case. However, if not critical, experts say never operate on an RSD patient. I wish I had gone there sooner. It was only after two other RSD patients recommended I go there that I made the effort. It required travel and overnight stays, but it is well worth it. I am going back in October because I have a bone tumor on my other hand and I need surgery. They will prep me for months in advance before they go forward with it. Like you, my RSD in not "cyto protected" enough to have a surgery. CC is the place for me to get that in place before I proceed.

I hope this helps you.

hello,
I use to live in Storm Lake IA. And I was born & raised in the Sioux City area. What part of IA are you from? I am surprised Iowa City didn't know more than they do. I would guess the Mayo Clinic is a pretty good place to go.

I didn't have RSD when living in IA. I am in North/Central CA. Live about 50 miles east of Sacrament on Hiway 50.

DebbyV

ps btw I have RSD in both feet since '03. Thankfully I have little to no spread. What spread I started to have we nipped in the bud with SGB's. upper nerve blocks for my hands.

Hello

I live in Cedar Rapids, Iowa it is about 25 minutes from Iowa City. I went there before the referal to Mayo Clinic. The Doctor I saw for 5 minutes said that she does not know how I could be diagnosed with RSD if I had not had surgery on the tear of the tendon yet. She stated that I had to have surgery as it is a requirement of the defenition of RSD, she told me to go have sugery and then when I need her to come back.

The next day when I saw the nureologist she said that she is supprissed at the response given at the U of I as it goes against everything she has read about this and to go to the Mayo Clinic.