My Journey To DX........Eileen's Story

From: EMY2628 (Original Message) Sent: 8/18/2005 2:59 AM
My story starts with a simple trip and fall while I was on vacation with my husband in June of 2002. I broke my wrist, broke my leg and dislocated and broke my ankle. An ambulance was called to take me to the local emergancy room where xrays were taken of both my arm and leg. The ER doc said that I would have to have surgery sometime with in the next week to ten days, but that for now he was just going to turn my foot back around to face in the proper direction. Needless to say this was excrutiating because even though they gave me something to put me in lala land the procedure required two seperate turns of the foot and as I woke up screaming from the first move he had to complete the second move. My leg was then put into a soft cast/wrap and I was told to contact my local ortho when I returned home. It was going to be a 31/2 hour car ride home and I knew I couldn't handle it yet, so we stayed at the resort one more day. After staying on my back and trying not to move for the whole next day and eating pain pills I decided I could handle the trip home. Boy was I wrong, I was in agony all the way home and was in and out of conciousness. I callled my ortho who had operated on my knee previously and he was not in again until Mon., this was Fri. So I waited because I really trusted him. I don't know how I made it through that weekend, a couple of times I almost went to the local ER to just let anybody take care of it. Anyway when I went to the ortho's office on that Mon. he tried to take off the soft cast to do new xrays and I was screaming in pain, because the top of my foot was ridiculously over sensitive. He did not seem to think anything of this and just did the xrays with the cast on. The next day June 11th I had surgery to put a plate and screws in my leg and three screws in my ankle and was put in a hard cast. The next three months in the hard cast was torture I could feel my foot/ankle swelling all the time and the top of the foot was going crazy with pain, I repeatedly told the doc this but again he thought nothing of this. When the cast finally came off, it was off to physical therapy, again I kept complaining about the sensitivity at the top of my foot and was told that it just need to be de-sensitized. I tried and tried but just could not get my foot to do what it should be, it would not lift up correctly and would drag and cause me to trip....still the phys. therapy people said it was just what my limitation was going to be with range of motion. Finally my primary care doc sent me for an EMG and lo and behold my peroneal nerve had been entrapped at the knee level for six months by now. The ortho did another surgery to release the nerve and then the fire really started in my leg and foot. I went to another ortho to make sure the first one had done everything correctly and was told that he did but that I should see a neurologist for the nerve pain. I did this and she started me on Neurontin for the pain, and never said what she thought was wrong. I kept complaining to the ortho of the terrible pain in my leg/ankle/foot and he decided to do another surgery and take out all the hardware incase this was irritating my leg. This was about a year out now from the original injury. The removeal was a failure and now he decided to do arthroscopic surgery in the ankle joint and scrap out all the damaged cartilidge and try to promote new cartilidge growth. This also was a huge failure and now I was walking (with the aid of a walker or cane) with raw bone on bone in the ankle joint. Again I went to another ortho (supposedly the best in the area) and saw the director of foot and ankle surgery. I wanted to again verify that everything that was done so far was correct procedure given my circumstances and see if I would be a candidate for a cadaver cartilidge transplant. I was again asssured that everything that was done thus far was standard and that I had to much damage to be eligible for the transplant. He agreed with my original ortho that unless a special brace would hold my ankle in the right position that the only option to stop the pain was a ankle fushion. I had the brace made but unfortunately could not wear it because you have to wear a shoe to use it and I can not wear shoes due to the pain in my foot. Mean while my dosage of Neurontin kept increasing, and I had been put on Oxycontin which I really did not like. So I agreed to the fushion reluctently and had my knee on the other leg scoped at the same time because that was going out on me again and I literally had no leg to stand on. My foot/ankle and lowerer leg are varing shades of red to purple all the time , but especially when my leg was hanging down in a normal sitting position. So now two years out from the injury I had the fushion surgery. My foot was on a horrible angle and the pain was worse still and after three months the bones had not yet begun to knit, so the doc went back in and removed the screws (one of which had to be drilled out the bottom of my foot because he could not get it to back out), cut some of the damaged bone away and refused the ankle. Once again I was only in more pain then before the procedure and it took a whole year for the bones to knit (partially because I am a diabetic), the last five months of this time I had to wear a electric bone stimulator to get the bone growth started and this almost drove me insane. During this last year I had started visits with the pain management doctor to prescribe all the meds and he to date, has performed 4 nerve blocks, three of which did nothing and this last one has increased the pain again and now I hurt in addional places in my leg. On my last visit about a month ago the ortho said "well sometimes the surgeries make the dystrophy worse". I was floored, this was the first time any of the doctors I had seen had ever mentioned any dystrophy. And so I was diagnosed with RSD by the ortho and CRPS by the pain management doc. I currently wear a Fentanyl patch for pain, have Percocet for brkthgh pain (usaully three a day), am at the highest level of Gabapentin(generic Neurontin), take Clanozepam, Soma, Daypro, and have to wear three Lidoderm pathces on my foor in order to wear a shoe just for a little while. I can only walk extremely short distances with the walker or quad cane and have to use a wheelchair the rest of the time. The doc's are now telling me to get an electric chair or scooter so that I don't completely destroy my knee on my "good" leg (which since the last operation is filled with arthritis pain and requires a brace daily). My pain management doc is sending me for a consult with a RSD specialist and a doc who specializes in the Spine Stinulator for pain relief. I live my life day to day, usaully in bed with my leg up and a bag of ice on the foot since all along that has been the only thing that provides any relief from the burning sensation and my leg and foot/ankle are a permanet shade of red that changes shades based on what I am doing(JUST WRITING THIS HAS CAUSED ME TO BE IN AGONY), and sleep is a precious commodity when the pain will allow it to come. I only hope that more doctors will recognize the signs of this monster earlier and that others will be able to get treatment sooner, with better results. I am going to have to think long and hard as to what my next move will be and I just have to trust that God will show me the right direction to take.
That is my story of how it all started and how I finally was given a dx and a name to put on all this suffering.



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From: byrd45 Sent: 8/20/2005 10:03 AM
Dear Emy,
Thank you for sharing your story with us. You have been through so much and I feel they should have told you they thought you had RSD from when they initially suspected it. I think the way you found out stinks and they should have been more honest with you. Do you have your appointment yet for the RSD specialist? I wish you luck and let us know how it goes for you. I am sure you will make the best decision for you.
Love,
Robyn


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From: EMY2628 Sent: 8/20/2005 6:57 PM
Robyn,
Hi, yeah I think the why the did me stinks too, unfortunately I can't undo any of the damage now, I just need to move forward. Yes I have an appointment next Mon. the 29th to see the doc about the SCS and I have an appointment the end of Sept. to see the RSD specialist. I'm going to hear them both out and see what kind of options they offer me and then I'll probably be making one of the most difficult decisions of my life. I'm scared to death of any future surgeries or treatments because I just can't handle more pain (espcially when you think you're doing the best things possible to help/prevent it). Thanks for your good wishes and I will surely be keeping in touch through the message boards!
Eileen


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From: FiNdAcUrEnOw Sent: 8/21/2005 8:08 AM
Hi Emy,

I havent posted my story yet, still reading others stories. I think my story would take up so much space people wouldnt even want to read it. It has been a nightmare and that is an understatement as we all know. I just thought I might throw in a quick suggestion that might help, well with your oh so familiar "burning pain" anyway. There is a compound called Ketamine ointment. And it really really helped with the burning pain. I guess I should mention that everything doesnt work for everyone, because I made a suggestion that another RSD sufferer read all the many many sites on Neurontin, and consider going off it, because there are so many sites and even doctors themselves who have stated that Neurontin is not for RSD or the many other ailments it seems to be prescribed for. I didnt mean to offend anyone, just wanted to pass on the info to others, especially because the bad press on neurontin has now even made its way to the RSDhope site (which is an awesome site.) it had already been out there for awhile and I personally stayed away from it. We had a friend who actually worked for the company that was passing it out to all the doctors and he told us he actually finally quit the job, after some time, because he couldnt live with him self lying to everyone about what the drug was really good for. He told us he was told by the company to sell it as a wonder drug and say it worked for all sorts of things he knew it was not going to do a thing for. We were shocked but at the time never had any reason to really be concerned until I got RSD and was prescribed it. I never took it, but hear so many people who do and at pretty high doses and just think its a shame to be taking something that is supposedly a "fake drug" There are a lot of nerve pain drugs out there, and new ones coming out all the time, so why take one that seems to have such bad press, especially if its not stopping your burning pain (thats what its told to you that its supposed to do) Well, I'll stop on the Neurontin, just hope everyone will research it for themselves and then they can make their own decision if they want to ask their doctors to try something that might be more effective. Okay I got a litle off track here, what I wanted to tell you was to see if your doctor can prescribe you the Ketamine Ointment to try. Keep in mind it is kind of hard to find as you cant get it at your local pharmacy because it has to be made, they call it a compound, and it is ususally found at non chain pharmacies. I think its worth a try, oh and something else to keep in mind, there are a lot of doctors who have never heard of it, I actually found it myself and asked one of my doctors to prescribe it and he did. Well, I wish you the best of luck, and hope you will find better pain relief with a pain management and RSD specialist. I am waiting to get into one myself. (insurance issues holding it up) Keep us posted, would love to know how it works out for you, and if you do get the Ketamine Ointment, how it works for you. Wish you and everyone all the best, and hopes for more and more exposure to get out there on this crazy thing they call RSD/CRPS, so one day they may have better treatments and then a cure. And I dont think I have to tell anyone here how many doctors and medical professionals there are out there who still have no clue what RSD even is. That is something that MUST change. Best of Good Luck!


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From: EMY2628 Sent: 8/24/2005 2:08 AM
Findcurenow, Thanks for your suggestions, Ill try to find our about the Ketamine Ointment. I just need to make sure it doesn't produce any kind of a heating feeling, because heat sends me through the roof with pain. Also with the Neurontin, my pain doc tried to lower my dose (a guess a couple of months ago now) because I am at the highest level they can prescribe, but after a couple of weeks the burning was getting worse, so I went back to the full dosage. In my case anyway it (the Neurontin) does seem to lower the burning level, but as you said everything effects each of us differently! Again thanks for the info on the ointment and I'll see what I can find out about it. Wish you well, and you should post your story I'm sure we would all read it and probably learn from it too!!
Eileen


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From: EMY2628 Sent: 8/6/2006 12:38 AM
Hi All,
I just thought that I should give you a little update on my condition now as part of my RSD story. Last week I went to see one of the finest, most qualified doctors regarding RSD in the country, and while I was thrilled to finally have found such an excellant doctor who knows what he is talking about, I was very upset by what I was told.
I have been having many problems and pains in other areas of my body, aside from the left foot/ankle area of the original injury. I now have pain all the way up my left leg and into my back, both shoulders have frozen shoulder and my hands do not work well at all. My right foot/leg is beginning to show signs or RSD and my mind is a complete mess. So I was pretty sure that the RSD had spread or caused these other problems, yet it was still devastating to hear the words"you have fullbody RSD". which is exactly what I was told.
There a a few treatment options, none of which are a gaurantee, as we all know. I am undergoing tests now, to prepare for the first option of Lidocaine Infusions into my blood stream, that will be done in hosptial for about 5 days continously (if the ins. co. appproves it, of course), and then we will go from there.
I just wanted to update my story, as much has changed since the orignal version. I will be sure to update again as things get better or worse (hopefully better) and let you all know how the treatment(s) worked for me. In the meanwhile God Bless all of you who are suffering everyday and I am praying for us all that a cure will be found soon.

Eileen


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