Reflex Sympathetic Dystrophy (RSD)

[dennyfan]

Gojogo, I didnt know you had to have a trial for the pump thats good to know. thank you. I hope the radio frequency thing works for you. I guess you will know in a couple weeks. I watched the video for the SCS last night. I have to say I am a little freaked and keep changing my mind about what I want to do. And I didnt want to do that hear for fear of scaring Lorie but I have little opportunity to vent my fears anywhere else. I know In the end I will try it I think because its better than the alternative which is doing nothing. But the risks are there and they are scary. I would just give about anything though to have a low pain day its been so freaking long! I am really crossing my fingers for you though and can you tell me a little more about it because I have never heard of the radio frequency block.
Thanks again
Denny

[G0J0G0]

FYI Denny,
On the radio frequency block (RFB) the block is administered much like a "ganglion block" or a "stellate block". The doctor takes a prescribed amount of meds and applies it to the nerve endings from the spinal end. You are on your back and the doc guides the needle by xray so he can be sure to place the needle directly at the nerve source. This usually results in the foot/area warming up and for a period of time a reduction of pain. In my expeience these blocks haven't worked but a couple of days. The RFB is sometimes known as a lazer block and are administered in much the same way. The major difference is the center of the nerve is deadened or some people word it as destroyed, but the entire nerve isn't destroyed and this allows the deadened area to recover in usually six to nine months at which time the procedure is repeated. This info is given entirely in "lay-mans" terms, for I am no doc and am recalling from a sometimes not so sharp memory. Info on the internet is limited and I'll look around to see what I might be able to locate.
The SCS is a fairly major operation and should be respected so it might be wise to eshaust all options b/4 taking this path. There are a couple of mfg. for this hardware and one of the producers has had some of their "leads" recalled (I am not sure if they are tied to the SCS), so remember information/knowledge is power so empower yourself with everything at your disposal.
I know you wrote in another area that you are not a religious person and this aspect of life doesn't interest you, but allow me to say that great peace accompanies prayer, so at the risk of being offensive I will pray that the proper decision for you will accompanied by a great peace. If you will forgive me, and if I can offer any more info feel free to drop me a line. G0J0G0

[dennyfan]

Gojogo, I will not take offense only because of the gentelness ans not forcefullness of your prayer suggestion. I will try to find information on the lead recall. My doctor suggested going with medtronics for my stimulator. They have been in business a long time and have a good track record. The other company bionics has some new innovation likw with programing and their stimulator is a little smaller but my doctor said if it were him he would go with the company thats been around a long time. I am certainley not taking this decision lightly which is why I am waffling i guess but I lnow I will do it. I have pretty much no other option left. When there is an option its hard not to try it. I did two stellate blocks that did pretty much nothing for me so this is what I am left with. I have other procedures and tests I am facing for bladder problems I am having including a test for bladder cancer. I feel like I am being bombarded. Thanks for the help and all the information. Wishing you a good and low pain day.
Denny

[dennyfan]

Gojogo,
PS>>Found about info on lead recall it was medtronics the one I choose but for their defibrilator leads.
I may talk to my doc about it anyway.

[okiebutterfly]

Greetings EVERYONE! I haven't been able to get on the computer for the past few days. Been really busy and the teenagers in my house are taking numbers for internet use! lol
I did meet with my new PCP. He is wonderful!!!! My whole experience with him and his nurses was great. His office manager wanted to meet me because she had seen the start of my new file and it was marked "RSD". Her best friend of 15 years has full body RSD and she thought the two of us should meet. I about messed my self! There is another person out there just like me (I'm not fullbody though) and she is about 40 minutes away from me. She gave me her number and I thought I would call her Monday when the house is quiet.
I have been flaring up just about every day lately. It ranges from a 4 to an 8. I hate this disease. I want a cure..
Speaking of cure, I got an email about some RSD walks. One is in the big apple. I am seriously considering going. Not this year, but next. You can walk, use a walker, wheelchair, etc. They dont care, they just want to raise money for research and awareness. That is right up my alley! I used to run cross counrty in high school and running has been a passion of mine. But I reluctantly understand that I wont be a runner like I used to be. But I can walk. With assistance. And if I do the walk, it would give me a year to practice. I guess its a dream of mine. My kids said they would take turns pushing me in my chair if needed. I just want to WALK across the finish line......
I dont know why I even think about stuff like that... Here I am wanting to walk a 3 mile course and I am also wanting another spinal block or the stimulator for the pain... I dream big huh?
Anyways, just wanted to say hi. I am around, but its near impossible to get online in my house on the weekends!

Painfree hugs to all

Christy

[dennyfan]

Christy, It is so good to hear from you. I have missed you so much. I am glad you are thinking of doing an RSD walk. So far none I have heard about are even in my state. I know what you mean about the flares I havent been below a six except for two days after the first block. the second one did nothing. Why cant you get another block or the stimulator? I am waiting for my insurance to approve a stimulator trial and hope to hear next week. Cross your fingers. But I want to know why you can't get another block if they work for you. Where is your RSD? I am so happy for you that you liked your new PCP thats so important. I love mine. He has been my life line the last two years & I dont know what would have happned to me without him. I hope you call the gal the office manager hooked you up with. It would be nice to have that support in person. Tell us about it when you call. I am sure it will be great. I need to go. Write back real soon.
I have missed you.
Love and hugs
Denny

[G0J0G0]

Good evening Denny,
I think you are correct, Medtronics is the co. that had some problems w/some of their leads and it is associated with the defibrilator leads, as I said follow the peace. You mentioned "bladder problems", did I read earlier that you have I/C, if so what is your doc doing of late for treatment there and is this causing any complications with RSD? 'Not trying to be nosy, but my wife has I/C and this alone is enough, let alone having RSD too, and I am always looking out for any info that might help my bride. Thanks in advance, g0j0g0...

[dennyfan]

Gojogo, I don't know what I/C is. Is it inconstinence? I am having problems with leaking, burning and frequency. They are checking all of those things first at an appointment I have next week. The following week they are checking for bladder cancer in another procedure. Because of the position of the bladder on the right side I have wondered if this wasnt triggered by the RSD. As my RSD got worse these problems started. I dont know whats going to happen. I can tell you I am little scared.
Denny

[G0J0G0]

Good day Denny,
I'm sorry I have mistaken you for someone else. I/C is Interstistial Cystitis (unsure of spelling), is a bladder disorder where the bladder lining deteriorates and holds bacteria creating infection, trouble with all phases of urination, and a lot of pain. I pray sincerely that you have not contracted this, for it is close to RSD in pain intensity and discomfort. We have been living with I/C for years, Carla was diagnosed with this in 1997. So here is praying that your diagnosis is favorable and can be treated. g0j0g0

[okiebutterfly]

Hi Denny (and everyone! =) ) My RSD is in my left foot, going up my leg. And judging my right foot, it looks like its visiting there too. Both feet turn purple and calidascope when they are down. I can have 1 more Phenol block this year. I dont know why my specialist said it, mabe thats the way he practices it. But he has mentioned the stimulator just about everytime I have seen him this year. I have an appt with him on the 18th. I dont think I will make it till then. I would love to see him this week but hubby is on nights and we are busy on his days off this week. So I will just have to suffer silently. Ok, maybe not to silent. lol
We had horrible storms here in OK last night and today. My entire body feels swollen and all of my joints hurt. I feel like the Stay Puff Marshmelow Boy. Even my fingers hurt. And when I get up everything cracks. I just feel plain bad today.
As for the walk in New York, I live in Oklahoma. We were thinking that we would just make it a vacation for a long weekend there. Do the walk then see the sights. But take our time... My oldest son will be graduating next year and that would make a great family getaway. Plus, I want that time with him... So that is my BIG DREAM... Who knows if it will be a reality. And by the way, there are no walks here in my state either. When I said something about it to my PCP, he said, dream bigger and start one here. Dont limit myself... Yeah right, I have 4 teenagers, cant drive, and have a major short term memory problem going on... lol..
Anyways... I hope all is going good in your neck of the woods... Its raining bad here still.. Have a great day, and I will chat with you later!

Pain Free Hugs,

Christy