RSD Outreach awareness

My Story.............By Kathy

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My Story.............By Kathy

Post  byrd45 on Wed Nov 12, 2008 9:51 am

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From: Rittlemom1 (Original Message) Sent: 5/10/2005 3:51 PM
Hello Robyn and Friends. First of all I hope this is the correct place to be posting this as I am a little confused and a lot computer dumb.!! I am a 50 year old grandma who has been Recently diagnosed with this RSD thing! I have been looking for some pain pals so lucky me I found this site. As I tell my story and get into medical terms please forgive y spelling . Sept. 1 04 I fell (summer saulted) down my uncarpet stairs.(13) I ended up with an amubulance ride and severl injurys. The injury that turned out to be my RSD pal was a knee injury. I tore my posterier cruciate ligament. The Doc told me what a bad injury it was and how most Docs won't repair it because it is such a difficult surgery, but that with out it I would struggle more and more as time went on. Nov. 10 I underwent surgery . It was a 5-6 hour surgery that we now know set off my Good Friend RSD. So remember I am now telling the story in retrospect. I spent 5 days in the hospital (the plan had been one) my pain was unbelievable, I could not eat, my leg started contracting from day one. the docs would come in and undo the imobilizer and aces and pull and strectch it and then re bandage it. I was sent home to do 8 weeks of bed, with the leg imobilized, a visiting nurse 3x a week and a PT 3x a wee to do passive therapy. So me, my potty chair, shower chair, and imobilizer got to know each other quite well over the weeks. During week 8 at my doc visit he removed the imobilizer and told me to bend and straighten my leg. Yeah Right! He then told me I had two weeks in therapy to get it working or he would do it for me.(manipulation) I was shocked, as was my hubbie, we both felt as though he had been abruput and very unsensitive. Needless to say two weeks later there was no change. Doc visit I first talked to the PA who had assisited on the Surgery and became quite emotional about everthing as I felt I had been the perfect patient. PA left the room the Doc came in a bit later and first off gave a big apolagie and said he was just trying to goof around and must not have done a very good job at it. He then preceded to examin my leg and told me I had RSD and he wanted to refer me to a Pain DoC. This part your wont believe!!! lol I went across tho therapy all happy and smiles and told me PT that I did not have to have a manipulation that I had RSD. I did notice some strang looks being exchanged, but did not think to much about it. During that session I asked my PT what RSD was(the doc told me zero), her answer was ya know you can get a lot of info on the internet. I went home and did just that , and of course was devastated. The PT later told me they had known for some time just by looking at it.( they won't talk untill the doc does). From there continued therapy and: Two sympathetic nerve blocks, one lasted 4 hours the next 8 hours The Doc calls them sucessfull in that the are a good diagnostic tool even if they did not help in the big picture. Next was a epideral block over several days, I hated this one, it was a complete failure. The a trial with the spinal cord stimulator, two weeks later a perment stimulator two weeks later back in surgery because in the first couple of days the lead migrated was stimulating my abdomen. OUCH, at least I was able to turn it off. I am now two weeks out of surgery and so far the stimulator is still operating properlly. It does help maybe about 50-60% of the pain in my knee is dealt with. yeah for that!!! I am grateful but...... I said to the pain Doc okay this is great now my knee is somewhat less painful,but still stiff and starting to atrophy and still contracted so?......... Take that back to ortho and see what he wants to do.( thats FRi) ok what about all these other RSDish things such as sleep problems twitches, depression, etc.etc. he said " I don't believe these are related to RSD but go to your primary and see what he wants to do (thats next wed.) . He said he may want to refer your to a neuro. So here I am with my stiff , contracted , blue purple, still painfull leg and a stimulator and he stood there all proud like he was such a sucess as he sent me out the door. Let me tell you while he was treating me he was much more sensitive to as he said my "classic case of RSD" and he so wanted to help me with this" awful thing". I gimp around my house with a cane , and anything more than that requires a wheel chair. I have lots of questions to throw out to you all in the comming days. Maybe some of your knowledge and experiences can help me with my issues. Thanks for listening I look forward to getting to know you all in the comming days and weeks. Your partner in pain, Kathy



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From: byrd45 Sent: 5/10/2005 4:27 PM
Hi Kathy,
It is great to have you here and I would be happy to answer any questions you might have! I have had RSD for four years now after being assaulted at work. Needless to say that Workers Comp has done so many nasty things to me I could probably write a novel. You have been through so much in such a short time! I think that doctor was a totally insensitive j-rk. He threw an RSD diagnosis at you and never took one minute to explain things to you. I am so sorry that you were treated so horribly. You must have felt so alone and scared when you found out what they were talking about.
Being treated by a neurologist is a good thing when you you have RSD if they are knowledgeable about RSD. Please make it clear that you do want to see a neurologist but you need one who knows about RSD. If you see one and you don't think they know what they are talking about I would keep getting another opinion until you find one who knows. Alot of times you have more luck at a teaching hospital if you are near one. What you said about therapy made me laugh! I have had that look so many times like oh no and gee I hope it isn't contagious! I have looks like they think you are a leper too. They were probably so confused. Wondering why you were so happy. Well keep your humour in the foreground it has helped me get through so much. When I have gone in for Lidocaine treatments which help RSD pain. The drug Lidocaine puts your nerves to sleep but it has an interesting effect on me! I get really hyper and can't stop talking and I get real happy and funny too! I have had the nurses come in and say to me and my roommate Ladies keep it down in here you are in a hospital after all and they are other patients here too. Well we laughed even more because I felt like I was two and my mommy was yelling at me. I said well I think I know there are patients here because I happen to be one! She laughed in spite of things and said how about I shut your door. So that was that. Who says we have to be miserable just because we are in the hospital right. Anyway, the laughter helps me deal with being in there I hate hospitals and being away from my family. Keep in touch and let us know how your doctor's visit goes and I hope he will give you some medicine to help you cope with your RSD symptoms.
Love,
Robyn
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