Reflex Sympathetic Dystrophy (RSD)

[sound_man]

Hello

I am new to the forum my name is Jacob.back in 2006 (i was 14 at the time) i was taking a tap dancing for school back down in TN and somebody slide in to me and hit my right leg causing me to fall and dislocate my right knee. I had 12 weeks of extreme physical therapy and that just made the pain worse.I have just moved up to Ohio due to my parents divorce,I now live with my mother.back in 2007 i was diagnosed with RSD my skin was a red and purple color, the pain is outstandingly painful
I also have extreme swelling and i am sensitive to sound (I run sound for play,bands and pro theaters,and I love working with sound so this has destroyed my hobby) I had a bone scan back in 2007 to make sure it is RSD. it showed i had RSD not only in my right but my left is starting to show RSD to.
I have tried a lot of meds and nerve blocks and nether work. i am now 15 and my doctor wants to do a spinal cord stimulator or a Nero stimulator. I was wondering if any one on the forum has had one and if so has it helped you. I am wanting to try the surgery and right now i am fighting with insurance please if anybody can give me some information on this forum there point of view i will be very thank full.

thank you all in advance.

[Angeleyes]

I am in the same situation as you of having a SCS put in so unfortunately I don't have any insight on how it is helping, however the doctor did tell me that it could reduce my pain by 70%. I am truely hoping that he is right. I hope all goes well for you and that someone with some information will come by and post for you :)

[Lily]

Hello Sound_man,I have'nt got a stimulator yet but i had a lady tell me the other day she was in a wheel chair for two yrs and she got the stimulator and she now can walk again.You are young and i hope you do get something tell help you so you can continue your dreams.I saw you use to live in Tn I live in Tn also.I don't know if i helped much but it maybe the right choice for you.If i was you i would get your Dr to consult with you and your family and get a video to watch on it and it will give you more detail on how it works. I plan to get it done in the near future.If you ever need anything or just need to chat with someone who know what your going through we are always here for you,we all know some people have never even heard of rsd and no anything about it.Please keep us informed on what you decide.I Wish you the best.Lorie

[Dianne]

Sound_man,

I've had the SCS Trial and I loved it! It has been two weeks since the trial was removed and I really miss having it and can't wait until my surgery for the permanent but I don't have my consult with the surgeon until the 22nd of this month and then have to wait and see if the insurance will approve it.

I did get about 60-70% decrease in pain, I will still have to take my time-release pain pill at night but at least I will no longer have to take the meds for the break through pain, with the stimulator as soon as I turned it on I got immediate relief unlike the pain meds where you have to wait for 40-60 min. before they even start to help.

I'm really sorry that you are in so much pain at such a young age, but maybe since you are young you can find something that will help easier then some of us older folks.

My pain is in my feet and lower legs so I would think there should be no problem for the doctor to find the right nerves to help with your pain in your knees.

My prayers are with you. Let me know if there is anything else you would like to know about the SCS Trial.

Dianne

[thoracic]

I no a friend who has RSD she has that spinal cord stimulator. And she loves it, she has had it for 4 years. i met her when i put RSD in are paper, asking if any one ever heard of rsd. She replied back and thats what helps her. I will have it done if w/c approves it.

Thoracic,

[G0J0G0]

Good evening Jacob,
Welcome and here is hoping that you are able to find the info you are looking for. This is a great place to chat with others with like interests and pains. You can find a wealth of info by doing a goolge search on spinal cord stimulators (SCS) Medtronic is one of the manufacturers of these products. I hate that this demon has found it's way to you and hope deeply that you are able to find relief soon.
If you find RSD hard to handle and need to talk, drop a line and someone will get back fairly quickly. One thing for sure, we all know where you are and understand the pain and uncertainties you are facing. Keep a good positive attitude and remain active, for these are tools that will help you work your way through the maze of pain in front of you.
I pray that you find relief and soon. g0j0g0 aka, Alan.

[sound_man]

thank you all for your kind words and help,

right now I am having to deal with my aunt who dose not view RSD as a disability.
she thinks I should get a summer job and do lots of community service. I go to a alternative school
up here in Ohio called the linworth alternative program. you must do 20 hours of community service, that i can do and my doctor says is fine as long as i don't push my self. but she wants me working 10 hours a day and also she wants it to be a full time summer job. me and my mother and my doctor have tried to explain that I can not over do it also he dose not want me working due to the fact he want to do my test and the trial for SCS. also i need to stop saying that i have RSD (she states it dose not hurt that bad) that it is not real. I have shown her my leg and I i have shown her hundreds of websites and even tried to give her a letter from my doctor stating that he dose not want me working can not work.also at linworth you do a 1 week internship your freshman,sophomore,and junior, year of high school and a walkabout when you are a senior that is 2, 8 week internships i could not almost get thought one. I don't known what i can do or say to make her understand.

thank you all again for your help

[G0J0G0]

Hey sound_man,
G0j0g0 here and thanks for writing back. If I may ask what kind of alternatinve school is this, does the school train you for a specific career? What kind of community serivce are you expected to conduct? It seems that the letter from your doc and your mom's word should be enough to convince your aunt that you need to take it easy. Are you familiar with the McGill Pain Index, if not do a google search and look up a copy of the graphic that shows the graph it self? This index shows that RSD/CRPS also known as causalgia, is the most painful disease known to man and your aunt needs to know that this malady demands respect and you must not push your self beyond your limits. If you don't mind me asking why does your aunt over-ride your mom and doc in your abilities? I have included a link to the graphic that the site moderators may block but if not, copy and paste to your address bar for a copy of the graph. I have had this disease for almost two years and have lived through all types of pain (migraines, collapsed lung, broken bones and broken ribs) and haven't had anything that comes close to the pain from RSD. Your aunt needs to learn a bit about this disease before she does the affected area some irreparable damage. Has she talked to your doctor personally, if not you might try to arrange this? Please understand I am not a doctor and in no way am I an expert, I speak from experience to my own body and can tell you that RSD will make you respect it and if you don't you may end up in bed. I will be praying that all around you begin to understand this and treat you and this disease carefully. You do not want this to spread, for it can end up system wide (through-out your body). Write me back if I an do anything for you, G0J0G0

http://groups.msn.com/HelpingtocopewithRSD/mcgillpainindx.msnw?action=get_message&mview=0&ID_Message=4730&LastModified=4675618633396467943

[G0J0G0]

Hey sound_man,
G0j0g0 here again, I went to the school's website and you have your hands full and you need to reserve your energies to be able to continue your education at the pace required by the cirriculum of your school. The school's and work requirements are case load enough being healthy so be careful and my wife and myself will pray that you are able to hold up to the requirements in front of you... Be Blessed, g0j0go.

[katiekat]

Hi Sound_man,

You've got your hands full. Your mom and your MD are in your court and that's all you need to worry about, other than taking care of yourself and school...and whatever social life you can muster with all the pain and everything!!

You aunt is NOT YOUR PROBLEM! You do not need her validation for your condition or for anything. People see what they want to see. It's all well and good that she does not view RSD as a disability. Thank goodness for the rest of us that she isn't the Surgeon General! I wonder how she views other disabilities? Does she tell blind people it's all in their mind? Sorry to be flippant but I can't stand people like that. My father was like that. My brothers have learning disabilities and my mom was an LD teacher but he didn't believe in them so my brothers got little to no support while they were growing up and their lives suffered as a result. People like your aunt hit a nerve for me. She is not your problem. Love her for who she is but she clearly has her blinders on and you won't convince her of anything she doesn't want to be convinced of. Just focus on what you need to in order to get through what you need to.

That is the best advice I can give you because I have no experience with SCS. Listen to your instincts and always get a second opinion (from another doctor, that is - not from your aunt!). Best of luck and hang in there, sound_man!