Officially Diagnoised with RSD
 

Hi, I was officially diagnosed with RSD by the Chief of Vascular Surgery at LIJ in NY. I had ACDF C5-6 C6-7on 12/10/2010. I was technically better after my surgery. At 8 months post op I really didn't have any pain or problems. My ROM was very good, but there was still room for improvement. Only had muscle spasms once in a while and my strength was still improving. I was so pleased setting up my classroom at the end of August. My situation took a nose drive after being rear-ended on 9/2/2011. I went back to the OSS for my 1 year check. He said that with PT I should still get back more ROM and hopefully the spasms, knots and pins and needles will decrease, but that it could take anywhere from 3 more months to a year. After a total of 2 years from the surgery date, he said that would probably be it.
I went to the Chief of Vascular Surgery at a well known hospital "Long Island Jewish Hospital" I brought all of my prior testing reports from a year prior to the surgery up to the present. He looked at the EMG I had prior to the surgery. He said that those results ruled out TOS. I asked if the trauma of the surgery and car accident could cause the TOS and he said no. That answer surprised me. I have read that it could. But who am I to second guess him. He did a few tests, took my pulse on ankles, wrists, arms, neck and movement of my arms and neck. He said I was positive for Addison only on the left. My fingers, hand, toes and feet were very cooperative. Hands turned bright red and ice cold and then red and hot and sweaty. My toes were so blue it almost looked like I painted them with blue nail polish. They did not turn red and hot, but I had a picture of one foot bright red and the other one gray to ashen. There are times my hands and feet hurt without doing anything or touching anything. That is also a symptom of RSD. He feels that it is definitely RSD. Not much can be done about it from what I have read. Only thing that was mentioned was calcium channel blockers. Still need to research that.. I did not ask all of my questions because I lost my focus. I plan on writing down more questions and try to get him on the phone to ask my questions.
If anyone has any suggestions PLEASE let me know. Still trying to process what this means for me and my future.
Sorry I rambled so much.
Happy Holiday to all.

Hi Frenchfri1003...and welcome to our ramblin' club. You are in the right place for that as rsd has all kinds of aspects of it and sometimes we are about to lose our minds and this place gives you a place to vent (when no one else understands you) and offers support and will answer your questions to the best of our abilities. I am so sorry you seem to have joined our club. Rsd is not fun but you need to keep a sense of humor or else it will drive you crazy. Take things one day at a time and do the best you can with each day. Me...I pray alot and laugh alot. I've had full body rsd for almost 7 years now and have tried just about everything. You will find some things may work for you and others may not...some meds may help you a bit while others will make you feel worse. So, you have to see what works for you by trial and error.

I was saddened to hear about your car accident since you were on the path to recovery before it. Did you have the burning pain and color changes before your accident? I thought it didn't occur until after the accident. You poor thing. The medical field is filled with a mixed bunch of people that may know something about rsd and others that know nothing and are totally clueless. You will be knowledgeable about which one is which within the first few minutes you talk to anyone about your rsd. The "usual" route with rsd is first to try PT (but never use ice as it can make your rsd worse) and then they try nerve blocks (which are done via Pain Mgmt Doctors), and mainly medicine. I have tried pretty much the whole spectrum with pain meds and meds and I have found personally for me that they do not work well. Some may take a tiny bit of pain away but I never found anything that took it 100% away.

The two things that have helped me immensely are gently chiropractics and I started every two weeks about a year ago getting iv's of all natural vitamins and trace minerals and have worked up to once a month. My holistic neurologist doc told me people with rsd need those extra things and I believe it to be true. I was able to get off all my heavy pain meds and currently take a half muscle relaxer (Soma) at night to help me sleep and 3 mg of Melatonin and I have been sleeping for at least 6 hours straight each night (Thank God). I went through many years of not being able to sleep so this is a true miracle for me. It may take time for you to figure out just what works for you. But you have to take what all people say (including in the medical field) and do what will be best for you. Try to find one doctor (hopefully a good neurologist) that you trust and let him/her be the one to take charge of all your care. I am sorry you joined our club but we are happy to meet you and to have you here. This is the best group of caring people you will ever meet. We have not met each other but we are all a family here. Let us know if you have any questions (at any time as one of us is always awake) and hopefully we can help you. Best of luck.
kathy d

So sorry to hear what has happened to you. RSD is not a fun thing, as Kathy said, but you need to keep your hopes up and stay as positive as possible through the process of finding treatment and the right doctor for you. Kathy's right too about trial and error...what works for some does not work for others. That's why it is so important to find a good doctor you can trust who is knowledgeable about RSD/CRPS. I also recommend doing some research online about RSD because some doctors claim to know about RSD...but they don't really know about it and can often give you bad information or make you think you are going crazy.

This is a great place to ask questions or even to just vent. This is truly a crazy condition and you need support from people who understand what you are going through sometimes just to reassure yourself that you are not alone. Again...so sorry for what you are going through right now.

Oh, I'm so sorry to hear that, your appt didn't go much better than mine did. I wrote to you on other posting. I was hoping i had. It seems we are never to be finished with all this crap! I am in the same mental place as you, trying to understand what it all means, what to do, and how to gain function and quality of life back a bit more.

I wish you a very happy holidays, and some relief in the new year to us both.
Take care,
Cathie

frenchfri,
I wanted to welcome you to the group (family). I am sorry you have rsd, but remember you are not alone. You are welcome to rant, rave, or be happy here. We all learn from each other, which is great.:welcome_sign::welcome_sign::welcome_sign::w elcome_sign::welcome_sign:

As Cat says you have come to the right place to ask questions and vent. I didn't find this board until I had RSD for a year and thought I was going crazy and I thank God all the time that I found it when I did.

My neurologist told me NOT to get on the internet and look anything up about RSD. I took his advice until I could stand no more. I felt so alone and desperate until I found this board..I literally thought I was going crazy, but there are so many kind, loving, caring people here and they truly know their stuff. Without this board I would not have gone after and won my SSDI case. so welcome to this group, your life will change for the better the more you look around and ask questions :)

Thanks, concerned about progression
 

Thank you for your reply. I am still trying to "wrap my head" around this diagnosis. The extreme burning of my toes are new, only a month or two. Actually most of the significant changes are post car accident. Swelling of my hands and fingers, color changes of my hands and feet from red to blue. My entire hands and my feet even going up the back of my foot towards my shin. The swelling makes it difficult to wear my wedding and engagement rings. I also have very achy joints and not sure if that it part of RSD or just OA. Could also be a combination. I have been going to PT, but I am not sure they are well versed in RSD. I may have to look elsewhere. I actually think I have TOS since my left shoulder and area by the first rib is tight with limited ROM. Why do you go to a neurologist? I thought this condition was vascular in nature. It was a vascular surgeon who diagnosed me but felt it was more due to the exclusion of other situations. Not sure who to go to at this point. I still go to the OSS to have a recheck on my neck and back. They do have a pain management within their office, so I may talk to them. The burning feet make it tough to walk at times. The rest of the physical symptoms I can handle. I just want to keep this at stage 1 and not progress.
Thanks for listening and letting me ramble.

HI frenchfri1003,

I myself don't have any experience with spinal issues but I do have RSD and my husband did have 3 spine surgeries, 2 lumbar and 1 cervical. His story is opposite of yours, he was rear ended first, then the surgeries started.

Both of us are past patients at the Hosptial for Special Surgery, he had the last 2 spine surgeries there with success,except he had some issues after the cervical unrelated to the surgery he had a reaction to one of the meds. they still don't know what it was. And myself had 7 surgeries for a serious arm injury and worked with there pain dept. for the RSD with Dr. Richman for 7 years and then Dr. Gungor for 1. They have also just unoffically opened what is being called "The Center for Braxical Plexus and Nerve Trauma Center", it offically opens spring 2012 but from what I here are seeing patients already.

The only reason I don't go into HSS for PM any more is because I live on the border of NJ and NY State and the commute is a nightmare. After traveling in for 8 years I just needed a break. My RSD is under control after 3 - 5 day inpatient ketamine procedures plus many other procedures and only need maintenance on occassion so now I see a doctor they recommended in NJ closer to my home.

Hospital for Special Surgery is a great facility but LIJ is also great from what I have heard. I truly wish you the best and hope this information is helpful.

Gabbycakes

Thank you for your response more questions
 

Thank you for your reply. I had my spinal surgery at Huntington Hospital which is affiliated or one of the LIJ locations. I saw the Chief of Vascular Surgery at the Manhasset branch of LIJ (around 45 minutes without traffic).

Sorry to hear about the amount of surgeries for you and your husband. I am thankful that my car accident was after I was fused. It could have been so much worse since my neck was unstable prior. I thought about getting a 2nd opinion at HSS for my neck but wanted to stay closer to home and not travel into NYC. I live on Long Island in Suffolk County. The commute is not fun (train 1 1/2 to 2 hours plus the subway). I guess if I can't find any recommendations who may be considered an of RSD eld I may need to go into NYC. Just curious, why did you switch doctors?

What exactly was the treatment for the RSD? Right now I think my case is mild. Swelling in my hands and feet especially the toes and fingers. They can get red hot and burning like they are on fire or blue and ice cold. Not sure if other issues are cervical or whiplash related or all connected. Achy joints: wrists, hips, knees ankles. Muscle spasms and major knots in my shoulder blade region and in front in the same area. I also feel that some cuts on my hands are very slow to heal. I was checked for Rheumatoid arthritis and it came back negative but there is some osteoarthritis.

At what point did you have the 3 - 5 day inpatient ketamine procedures? I have read about this on line but not exactly what it is. What other procedures did you have? Just curious, how quickly did your symptoms progress? I know that everyone is an individual, but I have read that it is important to get accurate help and treatment with in the first 3-6 months.

Thank you again for your quick reply and your experience.

Happy Holiday and have a healthy and happy new year.

Dear frenchfri1003,

Yes, my husband and I have had many orthopedic surgeries but I believe both of us have had success do to the doctors, nurses and all others at HSS. Again not everything is perfect but they do a great job. I haven't left HSS I just don't require that type of help and they recommended a PM doctor closer to my home. Like you I live far from the city and the commute is a nightmare. As far as the RSD I was diagnosed about 6 months after my injury. I was very lucky. The first treatment I recieved was a series stellate ganglion blocks, my injury is upper extremety and that seems to be the normal starting point. I had to have additional surgeries to correct my injury while I had very active RSD. After I got my arm back that's when the ketamine treatments came in. Ketamine treatments are used to, for lack of a better word, reboot your central nervous system. It took a few times but it did work. My RSD symtoms did settle down and I haven't had any spread and was able to go back to some type of a normal life after it was all over.

Hope this helped.

gabbycakes