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Old 09-27-2006, 09:07 AM   #1
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mcgriffin HB User
Radiofrequency Next Step...help Please

PM DR says radiofrequency is next step ,go home and think about it . now i am obsessing about it. it really scares me . (spinal cord = paralysis) and if that fails then scs .if anyone has any experience good or bad with this please repond .
scared in naples, ROBBIN

 
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Old 09-27-2006, 09:55 AM   #2
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Re: Radiofrequency Next Step...help Please

Hello Robbin: I am not a healthcare professional and do not have personal experience with RFA but on another board where I go it was mentioned that RFA is not recommended for RSD. Find out about as much as you can before making a decision. A second or third doctor opinion may help. Good luck! Regards, Lil

 
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Old 09-27-2006, 05:46 PM   #3
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Hi Robbin,

I'm with Lil on this. Definitely do your research before you agree to the radio frequency ablation deal. I know it's not the same, but I had a surgical sympathectomy (I believe they're doing the same thing...disabling the sympathetic nerves in both procedures) and it's by far, the worst thing I did for my RSD. The pain was worse after. It stopped my left foot from sweating which has caused it to be very dry and sore. It's hot all the time too which I think causes little sores on it too. I payed a lot (as far as physical problems) for it and got nothing in return. Just get different doc's opinions before agreeing to it. Good luck with your decision.

Sharon

 
Old 09-28-2006, 10:45 PM   #4
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Re: Radiofrequency Next Step...help Please

Hi Robbin!

I had an RF block a couple of years ago. They said the same thing to me at first - that they wanted me to have a "radio-frequency." Well, I thought that meant an RF Ablation (destruction of the nerve or nerve bundle). When I called them back to verify - they told me no - its not an ablation, but rather they wanted to do an RF block. An RF block is the same as having a stellate ganglion block, but instead of using an injected substance to block the nerve, they use radiofrequency pulses. My understanding is that if you give the nerve(s) a steady strong current of RF waves, then it would ablate it.
If you are not sure already whether they want to do an RF block or RF Ablation, you should call your PM and find out.
I had the RF block a couple years ago. It wasn't nearly as bad as I anticipated - was just very sore afterwards. It helped for awhile but "wore off" after about 8 months.
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Old 09-29-2006, 08:11 AM   #5
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Re: Radiofrequency Next Step...help Please

thanks for reply lefty,
well i felt better for a minute ... then i got out the patient info sheet that pm gave me it definatly says ABLATION. even web dr's opinions on this seem negative .guess i was just hoping i could find a bunch of success stories (or failures) to help me with decision.
my list of ???? for pm dr seems to be getting longer-but this is really scarey and the way i understand it when wc is involved you can really say no to treatment.
lefty, what was next step for you after rf ?
thanks again,

robbin

 
Old 09-29-2006, 11:45 AM   #6
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LeftyKid HB User
Re: Radiofrequency Next Step...help Please

Robbin,

Sorry - didn't mean to give you false hope, but then again I made you feel better "for a minute."
Don't worry about having too many questions for your PM. It's your body. I always go to my PM with a long list of questions. At first they thought it was funny, but now they realize that I take a lot of initiative with my own treatment so they've said really appreciate it.
If you are uncomfortable with the procedure, then don't do it. You can always decide to do it later. Ablation is permanent, so you have to be comfortable having a procedure that can't be reversed. Maybe you can ask your PM what he/she thinks about doing an RF block instead.
Re: My next step after the RF block: After it wore off, I ended up changing pain clinics to one that offered pain management psychotherapy in addition to medical procedures. I've been on the waiting list for a year, and I'm finally the next one on the list! My new PM said my next step was to get an SCS. I declined, and have been trying to manage my pain with a combo of meds for the last year and a half.
Good luck, and let us know what you decide to do.
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Old 10-01-2006, 09:26 PM   #7
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Re: Radiofrequency Next Step...help Please

Hi Robbin, I am new here, have tried for three days to respond to your post but none seem to be going thru, thought I'd try once more, hope it works. I had cervical spinal fusion c5-c6 with graft and hardware. Did well first six months then pain returned as c4 and c7 now unstable.

Ortho thought I might benefit from epidural injection in neck. Sent me to pm, he used no sedation, just sat me up in chair and anesthesiologist did them, very barbaric and no relief. Next step was pain management,(a new one), they did a series of three facet injections under conscious sedation, no help here either.
Ortho did not want to do multi-level fusions so ortho and pm consulted and decided I would benefit from Radio-frequency ablation. September 15, 2005, I went in for RF bilaterally at c4-c5, under conscious sedation. This procedure literally burns, heats-up, destroys the nerves at their roots as they exit the spine. The goal is to disrupt and stop the nerves from sending pain signals. The procedure was incredibly painful, worse than any surgery I have ever endured.
I went home to rest and within eight hours I had to have my son call 911. My heart rate was over 200, sweating perfusely, numb hands and legs, could not walk, very faint, swollen neck, paramedics and er docs noticed unequal pupils, was hospitalized for two days on a dilaudid drip that did nothing for the pain. I left after the two days cause they were not helping me and I had children I had to care for. It was excruciating to wear shirts, felt like crushed glass in all my shirts and like someone branded my neck, shoulder and upper left arm. After two weeks of this I went back to ortho to find out what is the problem, within three minutes of hearing my symptoms he said I have RSD. Never expanded on those letters, I just left not knowing what it meant. Needless to say I got my RSD from the RF, a procedure to relieve some pain has now caused my unrelenting, permanent pain.
I did research RF prior to the procedure however must not have found the right sites. Keep in mind, that even if I had not gotten RSD from this procedure, RF burns and destroys the nerves, they do grow back however, the nerves are the slowest part of the body to regenerate. When they grow back, they do not follow the same correct pathway, they come back all haywire so the long term results will be more pain. A procedure which was to ease pain, has been a life altering event.
My ortho, neuro, pm, and pcp, all have told me that there is no cure, only comfort measures. Mine has now spread to my mouth, tongue and teeth, as well as my entire back. Please seek other treatments as this one is a lose-lose gamble. I am on disability and between the pain, chronic fatigue, and depression to name a few of the gifts that came along with the RSD from RF, RSD are the letters I think they branded into my neck. If I can save one person from this I will be happy. You cannot win with RF.
Sorry this is so long and rambles. Let me know what you decide. Please take care, DJ

 
Old 10-02-2006, 12:24 AM   #8
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Re: Radiofrequency Next Step...help Please

DJ -
Wow. What a horrible story. I'm so sorry that happened to you. Whenever you need to vent or share - we're here to listen.
Thank you so much for sharing your RF story with us. It's so important for all of us RSDers to read about real-life experiences with treatment procedures.
Thanx!
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Old 10-02-2006, 02:20 AM   #9
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Re: Radiofrequency Next Step...help Please

Dear Sweet DJ-
my god...thank you for being so persistant with post.if my mind wasnt made up before - it certianly is now .
guess that's why they call it practicing medicine ,right ? no wonder most of us are depressed, test animals don't have much of a life . so how do i get around this with wc ? it's my understanding if i refuse treatment prescribed they can close my case , then what ?
sorry about bad attitude...its 4am im tired -but cant sleep ,hurt-but meds arent cutting it tonite , and to be frank i'm feeling alittle sorry for myself...for us all. just wondering if the truth was really known how many of us are suffering because something some dr did to us !?!?

again thank you DJ
and apologies for bad tude...Robbin

 
Old 04-17-2007, 10:26 AM   #10
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Re: Radiofrequency Next Step...help Please

Thought I would bring this to front so others could read it. Dee

 
Old 04-29-2007, 07:09 PM   #11
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jodom1979 HB User
Re: Radiofrequency Next Step...help Please

god. Mine is a RF BLOCK. not an ablation. But she said I have choices with her... so I have that in my favor. She said the block is not permanent and she has yet to have a bad outcome... like causing more pain ect. She did for warn i would be very sore for a few days after and to take off work. I think im going to give it a whirl as the SCS scares me even more.

These lumbar blocks are nice but cant do them forever. I know they arent going to last and I need to move on to something else.. Just what to do next..

 
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