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Rank:none
Score: 159
Posts: 159
Registered:
24/10/2002
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(Date Posted:11/07/2007 06:44:28)
Hi everyone,
Hope this finds you all doing ok. I haven't been around much on here...I didn't even know that the site had been down for a while, that's how out-of-the-loop I have been. But hopefully I can get back into the swing of things and be on my computer more.
John had sent me an e-mail asking me how I have been doing and that some of you had been asking about the Pulsed Radiofrequency Ablation (which I will call PRF from now on). I had the PRF done on November 29, 2006 at OSU Medical Center. Basically what PRF is a "pulsed" version of Radiofrequency Ablation, which is commonly used to treat cancer tumors. What they do, is the doctor has a thermal probe (I believe microwave) that is heated up to a certain temperature and then the probe is put onto the tumor and it essentially burns the tumor away. With PRF, instead of trying to actually burn the nerve away, they "stun" it with the probe for anywhere from 20-40 seconds. Whereas with the regular RA, the probe would be there for 60-90 seconds.
When I initially saw the doctor at OSU, he had performed 6 PRF's on people with LPHS, and it had worked for 4 of them. He would consider it a success if it lasted for more than 90 days or 3 months and if you can come down 75% of your pain medication. When I had the PRF done, I was on 2400mg of MS Contin and 60mg of MSIR (both are morphine) a day. I'm down to 200mg a day and 15mg of MSIR. And the reason that I'm still on medication is because of all the clots that I pass. It has been almost 8 months now, and I still have NO pain in my kidney. This has been a first for me. I have never been pain-free since the kidney pain started in 1997. I was astonished to be pain-free. You can be pretty sore from the procedure itself, so I didn't know that I was pain-free for about 2 days. The biggest advantage to having PRF done, is that it can be repeated. My doctor said that it would probably last anywhere from 6-12 months, maybe 18 months, and then when the pain starts coming back, he could do the PRF again. He stated that if the PRF works, it will likely work for longer and longer as you repeat it. They don't know exactly why that happens.
Some disadvantages to the PRF are as follows: obviously, it is not treating the LPHS, it is only for pain management. To me, this is fine since the pain was the worse side effect of the LPHS for me. But if you are one of those people who pass a lot of blood clots, like me, you will continue to pass them, even if the PRF works. This leads me to the 2nd disadvantage. This only works on the nerves to your kidney, so when I pass a blood clot, as soon as it leaves the kidney, I am in pain. That's why I'm still on a little bit of pain meds. I asked if they could perform the PRF on the nerves around the ureter or bladder, and the answer is no. He said the nerve bundles to those areas is very complicated and they would not be able to isolate the nerves to perform the PRF. And the last disadvantage is that many health insurance companies view PRF as experimental, hence they will not pay for it, not a penny in most cases. I am still fighting with my insurance company trying to get them to pay for this. It amazes me that just from a financial standpoint, I was spending over $5000 a month on medication, so that is over $60,000 in prescriptions a year!! And the bill that I got for the PRF was roughly $18,000. Don't get me wrong, it's not cheap, but it's over $40,000 less that the insurance company has to spend. So keep your fingers crossed. If you can prove medical necessity, you might just get your insurance company to pay for this.
So the bottom line for me is this.....the only other option I had left was a pain pump, and since I am only 33 years old, I didn't want to do the pain pump yet. I figured that was my last resort and I don't want to use it just yet. (This is not a bash against the pain pump, so please don't think that!!) When I heard about the PRF, I thought I would check it out, and if it could work for me, then I could extend the time until I would have to get a pain pump. I mean, I'm just trying to be realistic, since there is no cure for LPHS, I know this disease will be with me for the rest of my life. I don't care what 1 doctor says about it "burning itself out" when I am older. I just have not found that to be true. And if it is....I will gladly be wrong!!
It's been over 7 months, and I finally have some sort of life now. I work full-time and I am finally starting to date again. That hasn't happened in a long time! So my quality of life has shot up drastically. And that's all I asked for, that if my quality of life could be improved, even slightly, then the PRF was worth it.
If anyone has any questions, or would like any information on the PRF, (there is a paper out there on the internet about PRF and LPHS) please let me know, and I will be glad to share my experience with you and answer any questions that you might have. I am sorry this is so long, but I told John that I would update my situation on here, so here it is! Like I said before, I hope you all are doing ok....or are at least just trying to make it through life right now. Keep your chin up, you are doing a great job. Take care everyone.
Jori
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