Dear Dr. Apkarian,
I'm curious: have you ever looked at the brains of well treated RSD pts? I've had RSD for more than ten years, but after numerous continous epidural infusions and regular PT, I have very little pain. I occasionally do have pain and the color changes, etc., but you'd never know that there was anything wrong with me unless you noticed the three small TTS1 Catapres patches applied locally. (I also take 25 mg Lyrica most evenings at bedtime.) I have a basically normal life (other than seeing my doctors every few months for refills and being diligent about the PT) with normal activity levels and full-time employment, I wish more people could get the tx I've had. frankly, when I first got dx'd (within the six months of onset), I thought I'd never get my life back, but I was lucky and had great doctors who listened to my symptoms and who worked with me. Working in health care was another advantage--I don't know if I would have found out about the epidural infusions otherwise.
Anyway, I've seen studies like yours b/f and have always wondered about any changes my brain has undergone, given that I don't have the usual course of the dx, so I thought I'd shoot you a quick email to ask.
Congratulations on the article.
Dear Dr. Apkarian,
I have RSD and it was a long and painful journey to get here. Misdiagnosis and doctors who acted like it was in my head. I hate pills. I will only take the minimum of anything. I had a neurologists ďnot ď suggest marijuana for help with the pain. Many pain meds do not work. I just want some relief. I canít sleep anymore. The leg spasms are killing me. And my internal organs are also affected. Originally they were looking at the white matter in the frontal lobe and tried to tell me migraines may be the cause of all my symptoms. I do have an increase in headaches but it is so much more than that. My Dr. wanted to do a bone scan . Because of the severe pain I was in and morphine didnít touch it. He thought it may be bone cancer. He called with happy results; for him. How sad it was to learn that even how bad that would be, I was no closer to being diagnosed. It was a bitter sweet moment. I felt so lost. I found your article on line. I want you to know what and who you are doing research for. I may mean nothing to you. My story may not interest you. While I am getting worse and so many people are in the same boat as me; you are a source of hope. I cant even find a Dr. who treats RSD in my area. I live in Knoxville ,TN. Btw. So do what you do. Donít stop. Please.
Dear Dr. Apkarian,
I have just been sent a copy of an article entitled "Back Pain - Shrinking Brain which appeared on 23/3/03 Reuters and on an xtra newsletter in New Zealand. I was particularly interested to read about your work.
I suffered an injury to my back in March 2002 following a nasty fall. In July 2002 I had a lumbar discectomy which has been successful. However, part of my injury was a prolapsed vertebral disc which bifurcated and entrapped my sciatic nerve. As a result of this my nerve was very badly squashed and I am now left with very bad pain. I feel very supported by the medical profession who are working with me and am trying very hard to get back to "normal life". One of the things that is haunting me is that I am having troubles with my memory and with coping with everyday things which I used to do without thinking and with my eyes closed. Last week I was reduced to tears by such a situation which on reflection was not difficult to do at all. However, it is all very real to me when it happens.
Naturally I am a very active, positive, organised person and this fall has caused me much frustration and almost depression. I had hoped that I would have been up and running after 6- 12 weeks following my surgery and I am still having tremendous pain. At the moment we are trying Gabapentin as a treatment for neuropethic pain but so far it does not seem to be assisting with pain reduction.
Do you have any New Zealand connections working in your area of research? If I am able to assist in field studies in anyway - I'd be only too happy to supply you with information. If I can do anything to assist other people or rather assist in preventing this occurring to other people I would be delighted. It is the most huge upheaval I have ever experienced in my life and it is hard to convince people (friends and family) how real it is. I am usually greeted with a chuckle and that "oh, it happens to all of us, it is called age" but I am convinced that it is not - this type of memory malfunction is way over and above just going into a room and forgetting why you have gone there!!
For your information I am 52 years old, happily married and mother to 2 boys (18 and 22). I am a teacher and college of education lecturer but at the moment I am only teaching for 3 x 2 hour sessions a week because of my pain, the fact that I am unable to sit down and that I tire very quickly and feel hopeless and unable to cope. If I did not have my 6 hours a week I think I would have gone mad but I just can't manage more.
I look forward to hearing from you if you can possibly find the time to reply to me. I felt so relieved to read about your research and very much hope that it progresses well.
Dear Dr. Apkarian,
I read a press announcement about your speculation of back pain decreasing brain mass in the cortical region. A few months ago I had a fight with my wife over this issue. (She is a surgeon and I work on bio-physics, often incompatible disciplines.)
I feel that spinal fluid pressures are indicative of cranial pressures and that it is typical for there to be a decreased fluid capacity (smaller pressure volume) when there is an injury or muscular restriction in the spine. The higher up the injury the smaller the fluid volume.
As inflammation increases the overall pressure increases in both the spine and the brain case, increasing in waves where a high pressure wave spike (atmospheric and/or activity based) transmits damaging frequencies to tissue. I believe this increased pressure could cause gray matter deterioration where the un-relaxed volume transmits shock frequencies to resonant tissue (gray matter?) instead of absorbing them.
My wife thinks otherwise and says that I should take out the garbage instead of talking such rubbish.