My name is Lisa and I am 21 years old. My health problems all started when I was only 12 years old almost 9 years ago and I am still having problems 9 years later. It has been the longest and worst 9 years of my life.
My RSD started from numerous surgeries I have had on my foot for a bone infection. I had 20+ surgeries just on my foot and they were major surgeries. I had an infection that just would not heal. Finally it healed after 2-3 years. They ended up having to amputate my left big toe because of the infection. All my health problems started in 1994. I have had problems ever since and 9 years later I am still having health problems and unfortunately developing new health problems! I developed RSD in my left foot and ankle after the infection was gone after about 2-3 years battling an infection that just would not heal no matter what surgery they did or what antibiotic they put me on, both oral and IV antibiotics. When I got RSD I had a really really ice cold foot that was bluish black and also VERY very sensitive to the touch.
I was diagnosed with RSD in December of 1997 and had many procedures to try and help with the pain. I had numerous lumbar sympathetic blocks, epidurals, continuous epidurals(it stayed in for 3 weeks 24 hours a day 7 days a week), I have also had a bretylium block, full body sympathetic block and have tried many different medications like neurontin, mexitil and many others. None of the medications gave me any relief and all the blocks only gave temporary relief which I was greatful for because just that little amount of time with some relief was great!! The pain meds only take the edge off of the pain.
In March of 1998 I ended up having a sympathectomy. This surgery is very controversial in many doctor's eyes. It is also one of the most painful surgeries I have ever had and I have had a lot of surgeries (they go through your stomach to get to the sympathetic nerve that is along your spine). It is an awful surgery and VERY painful. The surgery helped with the RSD and the symptoms for about a year and then I developed an infection in my shin bone in the summer of 1998. I had to have 2 surgeries on my left shin (the same side that I have RSD in) and the first surgery did not clear up the infection and I was on IV antibiotics for 10 LONG weeks. It made me so sick, and it did not even clear up the infection so I had to have surgery number 2 done and this time they put my RSD foot in a cast and then I had a really really bad flare up of RSD. This time the RSD was worse than before. So I had sympathetic blocks again and tried all those treatments I had before again but had no relief. One of my doctors suggested doing a lumbar sympathetic block on my right side (not my RSD side) to see what happens. Well, to their amazement my left foot got warm and pink (before the block it was icy cold and bluish black). Now they did the block on the right side to help my left foot! My doctors did not know what to do next, there was talk about many things including a spinal cord stimulator. After a lot of discussion with the doctor's and a lot of thinking about it on my part, It was then decided that I would have to have another sympathectomy to cut the sympathetic nerve on the right side to help the left side. (so now I have 2 ugly and really big scars on my stomach on both sides!) They found out that the nerve crossed over to the left side causing me all these problems again, the RSD. The doctors have never ever heard of this happening. The surgeon said he would probably end up writing it up in a medical journal that is how unusual it is. As I said this is not a treatment doctors usually do, (the sympathecomy) many doctors do not even consider it a treatment at all because they do not believe in them, I have not talked to anyone who has had one for treatment of RSD so that is how rare this surgery is done for RSD. A lot of the people I talk to say that their doctor will not even consider or talk about it. Now almost 2 years later it is even more controversial and less and less of them are being done to treat RSD if any are being done at all. It is just a very controversial issue with doctors. Many people do not even know about this surgery because some doctors say it makes the RSD worse and some say it only gives temporary relief and is not worth it.
With the permanent nerve damage I have ended up with from the second surgery and a lot of different health problems happening after the second sympathecomy which my doctors are wondering if they are all somehow connected to the second sympathectomy, at this point in time I think I would have to agree and really regret agreeing to having the sympathecomies, they only do give short term relief and left me now with lots of other health problems, permanent health problems. I had the second surgery in April of 1999 but have side effects and permanent nerve damage from the surgery. My surgeon said that if I had not had the surgery though I would have lost one of my toes because I had such bad circulation in my foot! My foot was black and the skin was cracking and bleeding because it was so dry, and it was just awful. However, I developed a "common" side effect from this surgery called neuralgia (it is another nerve problem) and from what I have read it is a type of RSD and the symptoms are similar. I have this in my right leg, my whole leg, mostly in my thigh and it is very very sensitive to touch and very very painful. This was supposed to have gone away in 6-8 weeks after the surgery but it is now almost 2 years since the second sympathectomy (I am writing this on 2-20-01) and I am still in A LOT of pain from it. My doctors now feel that this is going to be a permanent disorder now, nerve damage. Now I have this problem too which is a problem that will never go away and it is something that I am going to have to live with. The surgery caused another permanent problem and almost as bad as having RSD and this is all caused from the sympathectomy surgery.
I had been receiving epidural steroid injections to try and help the nerve pain in my leg and also went to physical therapy for a MENS unit which is very similar to the TENS unit except that with the MENS unit you do not feel the vibrations like with the TENS unit and the MENS unit goes deeper into the tissue. These however, did not offer much relief so now with the nerve damage in my leg they do not know what to do, there really is not much you can do for nerve damage though so I just kind of have to live with that and take pain medication to try and help relieve some of the pain.
In total counting the sympathectomies I have had about over 20 surgeries and have been in the hospital 5 or 6 times (if not more), a week or more at a time. I have had to have nurses come to the house for the IV's and to change the dressing on the epidural catheter and that was not fun at all. I missed my entire senior year of high school and lost all of my friends. You really find out who your true friends are when something like this happens.
I am going to college now however, I will be honest with all of you it is VERY hard, but with determination and not giving up it can be done! With all the pain I am in and everything I just do not have any energy at all so studying and doing homework is very difficult. Just sitting in class for an hour and a half was very difficult. This past semester, the Fall 2000-2001 semester I had to take the entire semester off because of the pain medications and the horrible pain. Then this semester (Spring 2001) I had to make a hard decision and decide if I would be up to it to go back to college. I would not be able to sit in class or drive and get myself there so I decided on taking an online English course, it is all on the internet and I do not have to go to the college at all. It is a difficult class but, it is something I can basically do whenever I can do it and when I am up to it, if it is 3am in the morning I can do my work and just e-mail it in. There is no professor there telling me that this is due or that is due so it requires you to have your priorities in the right place or else you will get behind really quickly. There is contact with the professor but I do not see him 2 times a week or anything, through e-mail and phone calls is how we communicate, or I could go in and see him in his office if I needed to at the college. All we have is the assignment sheet and I have to make sure I get all the work in on time which is difficult but I get it done somehow.
In the past few years my health has declined a lot. Ever since the second sympathectomy I have had one problem crop up after another. I have the nerve damage which is from the surgery (sympathectomy) I am now wishing that I did not have the surgery but at the time there was no other choice for me unfortunately. My doctor now says that he rarely sees patients having sympathectomies done anymore, I guess because of the side effects and/or because of the little bit of relief it gives you and it is a very major and risky surgery and does not really work well for RSD they have found out.
I have also developed carpal tunnel syndrome in both of my wrists, I will eventually have to have surgery to fix that problem but I can not have anything done for a while yet. Also, I have developed really really bad scoliosis. When I saw the scoliosis specialist last the curve in my spine is currently at 62 degrees, my back is very painful. The curve keeps increasing despite the fact that I have stopped growing (I am 20 years old) and the curve is supposed to stop getting worse when you stop growing. I have tried Aqua (Water) Physical Therapy, regular Physical Therapy, many different back braces and nothing helps, everything just makes the pain worse!
So now I have to go to a new pain management clinic (the one I was going to ended up shutting down) and am as we speak setting all that up with that doctor. So, soon I will be seeing a new pain management doctor. I also have to go to a new neurologist. I have no idea what they will do for me, I will find out when I go I guess! But they did say that when they figure out what is causing the pain in my back (scoliosis apparently does not cause pain, as I was told by the scoliosis specialist) so they have to figure out what is causing the back pain and then treat the pain before they can even think about what to do to fix my back. They have said that eventually they will have no choice but to do scoliosis surgery because of the severity of the curve in my spine, so I know eventually that I have to deal with that awful surgery its just when that I do not know. I can not stay nor live with a 62 degree curve in my spine. It will start to cause other health problems which I do not need! So I know that sometime (in the near future most likely) I will have to go through that surgery, I have no idea when though and am dreading it because it is a very major surgery and extremely painful surgery. It could be in the very near future or it could be years away. I do not know yet. For pain I am on narcotics to try and help relieve the pain. I have so much pain that the pain medications do not do much though. I do not sleep very good at night either because of the pain. Between the pain in my feet, leg (nerve damage), wrists (carpal tunnel syndrome), and back it is very difficult to sleep, sit, stand, walk, and do anything basically. I think that this is about it, I am sorry this is so long, my health history is very long as you can see, but this has been my life the past 8 years! I will keep updating all of you with my back and everything.
Updated (2-20-01)
