Well, I finally made the trip to Cleveland. I saw Dr. Samuels yesterday afternoon. I am more confused and angry now then ever. I had been "diagnosed" with RSD/CRPS in my right leg (knee down) and foot due to multiple surgeries following a car accident. I had all the tests done here in Michigan that "indicated" RSD, so that has been my diagnosis for about 3 1/2 years.

Initially, I had injury to my knee and foot. I had an arthroscopic surgery of my right knee in Dec of 2007 (accident was in Sept of 2007), in which the doctor repaired my meniscus and debrided something. At this time, the same doctor was treating my foot with a bone stimulator (used to stimulate bone growth for the three toe fractures and a chip in my ankle).

I was then referred to another doctor in his practice who specialized in knee surgeries. This doctor did a patella realignment, and trimmed up the meniscus again. Basically, he moved my knee cap back into position and "screwed" it in place. (Done 05/08)

Also at this time, the original doctor referred me to a foot specialist in his office as well. This doctor diagnosed a Lis Franc injury to the foot and went in and fused the three toes (2nd, 3rd and 4th). He also removed a bone chip and made a repair to the tendon attached to the ankle area. (Done 10/08)

Following these surgeries, I also completed physical therapy. I also complained to the orthopedic surgerons that I had an icy dripping sensation, a burning, constant stabbing, pins & needles, swelling, purple discoloration, shiny skin. They insisted it was nothing "surgical", just in my head and suggested a pain management to work with me. Around this same time, I had questioned an allergy to the screws due to an allergy I had externally to cheap jewelry thinking maybe my body didn't like the screws. Screws were removed from the knee in 05/09 and from the foot in 10/09. Symptoms were still present after removal, however, the knee doctor noted that I had intense bone loss, especially around the head of the screws and he had to fill that area with bone putty.

So, off the my primary care physician to get her thoughts and recommendations on pain management. She agreed, and also said that I was exhibiting signs of RSD - shiny skin, temperature difference, reddish-puple blotches, grooved finger nails, pins & needles, cold water dripping inside my leg and the constant pains and aches.

Started with pain management doctors. They also diagnosed RSD, and we started with all the lovely spinal blocks. They ran a trial for spinal cord stimulator with one day good coverage. They advised me that this a success, and they could deal with the migrating coverage problems.

Before the stim was implanted, since I was still experiencing "joint problems" with my knee, I was sent in for an MRI. The MRI revealed a torn meniscus again. I was so unhappy with my origianal ortho team that I went to another well-known ortho who performed yet another arthroscopic surgery in 09/10 to repair meniscus.

Spinal cord stimulator was then implanted immediately after this surgery. This surgery was actually performed twice due to lead migration and the battery/generator moved in such a way that the control was unable to communicate with it.

So, the revision was performed in Dec of 2010. At this time, a laminectomy was performed so that the placement of the paddle would be permanent, preventing migration and improving coverage to the right leg and foot only.

To date, the stim has not provided coverage in the right area. It has also interferred with my heart rhythm no matter what program I am "on". The pain management doctors agreed to leave it off. Initially, I was told that it was due to swelling, and it would go down. This never has happened. At my check up with my orthopedic surgeron that placed the paddles, the P.A. noticed that the swelling was really bad and I was exhibiting symptoms of the flare/spread of RSD to my back and arms. She insisted that the pain management clinic start blocks immediately in the back area to prevent problems.

It took about 2 or 3 months to convince the pain management doctors that the swelling wasn't the problems the stim wasn't working, and that the RSD had got to my back, possibly from the surgery in which the laminectomy had been performed. The pain doctor started the blocks with no success.

I went back to my primary care, just crying that everything they tried was making things worse. She sent me to a rheumatologist. She was also concerned because my blood work was showing that my white blood cells were increased and a few other things were out of line.

So, the rheumatologist tested for RA, and a few other things. She too agreed and diagnosed RSD. She did find that my Vitamin D levels were extremely low, so she prescribed Vit D (twice a week, 50,000mg a pill), and suggested an accupuncturist.

So, now I am off to an accupuncturist. I went through 12 sessions of laser accupuncture due to metal allergy. She was unable to use the tradional needles on me, so she used a laser. She also infused my blood stream with "colors". This was performed once using an iv that left my arm so bruised and sore that she went to the "under the tongue method". This was performed twice with no success longer then an hour or so.

So, she had prescribed an H Wave machine which is basically a suped up TENS unit. I was surprised at how well the H Wave works. It does what the stim was suppose to do, provides coverage in the correct leg with me being able to control the sensations, and the locations.

I had also returned to my primary care physician because the knee had been grinding, catching and giving out again that was doing the same thing when I needed my meniscus repaired. She sent me in for a CT Angiogram (spelling?) where they inject the joint with medicine and leave a needle in and then do a CT Scan since I couldn't have any more MRIs. I had received a call from her office saying I needed to see my ortho again since the scan revealed intense damage in joint.

I went back to my ortho that had performed the arthroscopic in 2010, and was told that while the joint damage was intense, I still didn't qualify for a new knee. That with the RSD made me a bad candiate for surgery. (He had also indentified and diagnosed "possible RSD"). He recommended that I continue with my pain management doctors.

This takes me up to Cleveland. After a painful car ride down, I made it in to see Dr. Samuels. He came in, looked at me, touched me and said that I didn't present with symptoms of RSD, as there doesn't appear to be any change in the appearance or growth of my hair on the affected limb. My husband had shaved my legs about a week or so ago, but it was growing back. I was suprised to hear this, as for 3 1/2 years + I had been told it was RSD. I had undergone that freaking surgery for the SPC twice!!!! I have this hateful thing in my back that hurts, that causes me intense pain and has set me back, the blocks following the implant, etc.

He then went on to tell me that I was in need of a new knee, even though I told him what my ortho had just said. Dr. Samuels said he wasn't surprised that the ortho did not recommend replacing it, that he probably took into consideration my age, my weight and my unsuccessful previous surgeries. He felt that this was not a nerve problem but structural. He then asked and injected my knee with cortisone and told me to keep track of the pain and to see how long it helped with weight bearing. I was then sent on my merry way - a 5 hour drive back home.

I am ******. I don't know who doctor to be ****** at, so I am choosing all but my primary care doctor (who really wants to help, but can't figure this out). My back is killing me from the stim - my *** hurts from the battery (I caught it a few times in the back seat on the other seat belts) - my foot is throbbing, and my knee is no better. Granted, it was better for about an hour, but then I started having horrible, horrible cramps behind my knee cap practically the entire way home. He wanted me to call him in about 10 days letting him know what was going on.

So, where do I go now? To the looney bin? He gave me no answers, no hopes and new questions that I know I won't get answered. He also did not recomend removing the SCS as he didn't think it would improve anything. So, now I probably can't get it removed because the insurance had sent along my case nurse manager, and the insurance adjuster is a new pain in the ***, and she would deny due to the doctor's recommendations. I feel like now i am screwed (I would have used the other word, but I know this is a "family" board and even though I am upset, I should remain polite).

I feel today that there is really only one answer now if I want to be pain-free. Oh how easy it would be with the pharmacuticals I have in my possession. Just a few extra methadone tablets, a few extra ambien, a few extra cymbaltas, lyricas and celebrex tablets. By the time my family figures it out, it would be too late. So easy, but can I go through with it? What would I miss? I'd miss a few milestones in my children's lives, but at least I wouldn't have the pain. I would not have to worry about not being able to pick up a grandchild when they cry, I wouldn't have to worry about the hugs hurting. I wouldn't have to worry about ever having to find an answer to what is happening to me.

Well, sorry for the long posts. I needed to vent and to think. To have some type of clear head, to look at this logically. To validate an answer. I have some deep soul searching. I don't think I will medically have the answer, so I better go now. I'll be back later. If not today, there's always tomorrow, right?

Hi- I know how you feel and I have those same thoughts every day as I continue to decline with rapid muscle wasting throughout my body. I know what keeps me going is my family. I have seen what suicide does to a family and 3 pple I know commitedd suicide in the last year- not RSD related. Your family would never get over it !! You would be breaking their hearts -You have to think of them and just take the days an hour or a minute at a time.....

Hope this helps

Debbie

I am so, so sorry. Don't ever give up. Or assume that because the insurance rep was there you know what she is thinking. If the Stim was put in for RSD, and the doc thinks you don't have it, at least this diagnosis might give you a way to get the thing out.

Take a breather for a while and then get back in your game.

We are always here for you. XOXO Sandy

I am so sorry you are going through so much hell. I can relate as my my doctor's are six hours away (12 hour round trip). I have also just had a revision paddle lead surgery, which required a second lamenectomy. As soon as that surgery was over, and they still couldn't get coverage, my pain started to increase 10 fold. I was on the floor crying in pain. The stimulator was making my pain SO MUCH WORSE. Every doc and rep have said they have so idea what the SCS has done. Now my RSD has spread from my left shoulder, down my whole arm, up my left side of my neck and down my whole spine. I know it was from that surgery.
Don't worry there is still hope. Although I think if a doc told me at this point that I didn't have RSD I might punch him right in the face. You must have much more restraint than I have felt at my last few appointments.
I think you should try for a second opinion. You need a pain management doctor that is compassionate and understands the disease. I can't imagine the frustration you must have felt. I can empathize as it took me over a year to find the right medical team, and I'm still a wreck.
It's ok to just vent for awhile, get all the frustration out. Don't keep it in as we all know it makes our pain worse.
When you ready, and you will get there, you'll be ready to fight again. We always manage to pick ourselves up and keep fighting. Just reading how much you've already gone through I can tell you will continue to fight for relief.
Wish you all the best.

did I miss it, or have you seen a top notch neurologist? If not, that would be my next step.

I am sorry you had such a bad time at Cleveland. I like my doc there. I feel she knows RSD well, and treats me personally. So frustrating for you. I have been there. Drove to Elyria once to a doc that was supposed to know about RSD and all he wanted was to put in a spinal cord stimulator. I think if you went in there with poison ivy his answer was a spinal cord stim. It was awful. He was humiliating and degrading.

and with this stupid disease, you just have to keep trying.

My half sister had RSD. She lived a ways from the family. She hid the disease from us - we didn't see each other often. We knew she had injured her foot a few years earlier but did not know she still had pain or problems from it - had no idea the pain had spread through her body. I found out I had RSD the same day I found out my sister committed suicide because of her RSD. She was a patient of Stanton-Hicks for a couple years, and had a couple years she went un-diagnosed. I tried to talk to her widower about her care, to find out what worked, other details, but he didn't really know - he was to upset and I didn't want to upset him further. I surely would have liked to talk to her about it. If she would have talked to us about what she was going through -- maybe knowing I was going through the same thing, maybe it would have helped her. My Dad fractured his back in the 1950's and I am positive he had RSD - so with us, I think it is genetic.

So -- from one who has personally suffered the family loss of one who ended their life from RSD -- please - don't give up. I truly feel that there is always hope. They are studying this disease all the time now. The drug companies WANT to develop a medication that kills pain without being addictive - they would make billions of dollars - so they are working on it! Please, don't be like my sister Gloria. Keep the faith - keep the hope!

I am so so sorry that you are going through this. I have had the diagnosis of RSD and believe that it is a correct diagnosis based on everything that I have experienced. But in the course of treatment I have had several doctors say they don't think it is RSD because I do not exhibit ALL of the symptoms of RSD. It makes me angry because what they say about RSD is not accurate, so how can I trust their assessment of something that they don't understand? So I always ask what they think it is then and the answer is...they have no idea. Well...that just sucks and I don't know what to do with that so thanks for nothing is essentially how I feel. So I understand how you are feeling.

Please do not give up. Continue to search for answers and care. It may take a long time and that is no happy though...but you can't give up. Sometimes it helps me to think that as bad as things are right now...they could always be worse and that I need to think of all the good things. I know this is hard when you are suffering and getting no answers or help from the medical professionals that you are seeing (believe me I know) but you have to try. Is there anything that gives you joy or peace of mind in your life? Concentrate on that...whatever it may be no matter how small. They are making advances in medicine every day...there is always hope.

We are always here for you to vent...and I understand that sometimes that is just what you need. I wish you the best of luck and hope that they are able to help you soon.

Patti,
When reading your post today I found myself feeling anger, frustration and sadness.
This disease his hard enough to fight and the last thing us CRPS patients need from Dr's is incompetence, and Dr's that don't spend the time to read our medical history because they have already made up their minds as to what is going on with us. I think alot of Dr's have blinders on and they treat all patients the same and often these Dr's are only interested in full-filling their own agendas (whether it be research, their specialized surgery w/ the various products that increase their profit margins).
I would write a complaint to the patients advocate at the OH clinic because they way your appointment went is appalling. Its not ok for Dr's to treat us this way. If the Dr came into the room, literally briefly touches your leg and concludes from that short assessment you that don't suffer from CRPS then I'm thinking this Dr is not familiar with CRPS. In my case, the color changes didn't happen until year 2, my hair loss started at the 3 year mark and although the hair loss on my legs is permanent the severity of color changes all the time based on how bad I'm feeling. What was Dr Samuels specialty? I can't believe he recommended a knee replacement when an orthopedic specialist disagrees. Surgery and CRPS is risky nomatter what the procedure is addressing and it should only be done when absolutely needed.
This situation makes me so angry because I too have had simular experiences with below par medical care in combination with no compassion and them just flat out not listening to me. I too have left a Dr appointment with the contemplation of ending it all because the appointment was so devastating and he told me I was good as dead anyways. It took me months to recover emotionally from that appointment and after those few months I decieded that he didn't deserve one more thought in my mind let alone my life (if I ended it).
Please know that we are here for you and if there is anything I can do to help please don't hesitate to ask. There are better Dr's out there and better treatments that will help you. I really think the hardest part of fighting this is just finding a treatment / medication regime that provides true symptom relief.
I would also contact your other treating physicians and discuss what has happened with Dr Samuels and also discuss the fact that your CRPS is out of control and that needs to be addressed ASAP. I wish you luck and you will be in my prayers.
Xoxoxo
Sarah

Hi I am sorry this happened to you. I was treated by 2 pain doctors at Cleveland Clinic and felt my care was not good. I think you need another opinion. I have a pain doctor I went to in MI(I see that is where you are from)who I felt overall though I am still struggling a lot but he was way better then anyone at CC or UCLA etc. He looked at me as an individual and listened to my concerns and fears. Also he is very careful in terms of procedures etc and will look outside the box at everything possible that could be going on.
Hang in there and hold to hope

Thanks for letting me vent. I really had to get my frustration out, and to people who understand where, how and why I feel like I do. I'm ready to get back in the ring. I think my first call is going to be to an attorney to start advising me in regards to my Auto insurance adjuster and case nurse manager. I have an appointment with my pain doctor here in Michigan in about 2 weeks. I think I will keep that date and not call to get in sooner at this point.

My case nurse manager sent me an email yesterday stating that the new adjuster on my file wants a conference call between me, her and Dr. Samuels. I am going to email her back, and tell her right now given the "new" diagnosis of crap, the previous years spent (or wasted) on possibly treating me for RSD, and the pain I am in right now that I am going to hold off on authorizing such a call at this time until I meet with my Michigan doctor that has treated me for the RSD.

I know how insurance company adjusters work. Several years ago, I was office manager for one of the largest independent adjusters in the world (Crawford & Company). I saw and heard how the adjusters were instructed to treat the claimant/insured. I am going to make sure that I get and stay ahead of their little games they play. I am going to make sure that they are and stay responsible for the care of my body that has been ravaged by whatever I have. I am going to find what is wrong with me, even if I have to start printing documentation that either supports the RSD diagnosis or by obtaining information as to what I may be inflicted with.

This week has started with a big black cloud above me, but I have seen and survived black clouds before. I was just shocked and set back by the Cleveland Clinic's diagnosis. Deep down, I feared this trip would not help me, I just didn't think it could result in more mystery, more confusion and more questions.

As far as the cortisone injection Dr. Samuels put in my knee, it honestly didn't help. I did what I was told to do - I walked as much as I could before the pain became unbearable. I had to suffer the ride home from Ohio with constant cramping, throbbing and burning. At this point, I do not have much faith in a doctor that would arrive with the conclusions that he did without completely touching and looking at my leg, foot and back. I have no faith in a doctor that would say based upon such a short appointment that I do not have what doctors that have seen me and treated me since Day 1.

Thanks again for allowing me to vent and sharing your experiences with me. I had a few bad mental days - time for me to get back on that saddle and help the "professionals" help me.

to all - you all are really a wonderful, caring and supportive group. Not really a group though - more like my brothers and sisters in pain.