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Radiofrequency Catheter Ablation. I think thats how is spelt.....I am due to meet a Doctor in a few weeks to discuss this type of surgery for some VHL kidney tumors. I have read a little bit about it on the web but would love to hear from anyone thats had this surgery. Recovery times, how effective was the surgery etc......Thanks
Cancer Surgery Jaundice Pain Hepatitis Hepatitis B Cryosurgery
I've had it 3x's and I'm happy to report they got everything. I had both Kidney's done. The procedure itself took a couple of hours and was "uncomfortable" and but recovery was nothing. Back to everything but lifting in 24 hours. I would highly reccommend it if it is an option if offered.
Good Luck
My husband has VHL, & he's had 4 RFA's to both kidneys @ NIH. This is the best thing invented. It's definetly alot better for VHL patients since these tumors/cysts are numerous at one time. The recovery time is excellent, with going home the next day. It's very successful. Good luck to you!
My husband had his first RFA last spring at Dartmouth - I believe it went well, the scans show the treated tumors were knocked out... They usually cannot do everything all at once, but will target the bigger tumors first. Four tiny incisions, and home the next day: what a difference compared to spine/brain surgeries.
The only issue we experienced was that one of the probes hit a nerve on the way through, and my husband has had numbness and nerve pain on his front side, annoying and disconcerting, but not crippling in any way - it took a while to identify the problem since no-one had heard of that happening with this procedure: apparently quite rare. It is slowly improving, and he has been fine otherwise.
He'll probably be back for more at some point in the future, since there's a dozen or so lesions of various sorts left.
hi all, i'm at the nih this week and i heard rumors that the nih is no longer doing this procedure because there are risk of missing some of the cancer cells that might later spread....anyone else hear this?
My husband had RFA 2 weeks ago, right now he is doing well, thank God! I wondered why his urologist did cryosurgery before when RFA is less invasive. But thr radiologist explained to me that his previous was big enough and it is not a good idea to do RFA.\joan
I had RFA performed to my (R) kidney on June 5th, 2006, as I already had my left kidney removed in 2002. I was discharged the next date (June 6th) feeling no pain (just discomfort). However, the 2nd day home, I started feeling an itch all over my body. I thought that it was a reaction to anesthesia, although I've had it in the past w/out a reaction. Anyway, a week later (still w/ the itch 24hrs. non stop - my eyes started turning yellow (jaundice) went back to the doctor and they thought that perhaps it was hepatitis. I had a feeling that it was not hepatitis b/ prior to surgery I had the MRI done and my liver was fine and I've never used drugs nor am I an alcoholic, I agreed to the blood test which was negative. Finally, the doctors determined that it was due to my bile ducts and the deodenum??(large intestine) which lead to a major surgery on August 5th (4 surgeries in one) I had my gall bladder removed due to large stones, part of the large intestine was cut, the bile duct and a neuroendocrine (cancerous) tumor in the pancreas. When I woke up I had NO ITCH!!!! but I believe that noone can imagine what I went through from June 7th to August 2nd 2+ FULL MONTHS ITCHING DAY AND NIGHT AND THERE WAS NO MEDICINE (OVER THE COUNTER OR PRESCRIBED MEDICATION THAT CONTROL THE ITCH - DAY AND NIGHT MY KIDS' FATHER AND I WOULD USE A HAIR BRUSH TO SCRATCH DIFFERENT PARTS OF MY BODY AT THE SAME TIME. Afterwards, I was told that surgery to the pancreas had been unsuccessful because the tumor was sorrounded by large blood vessels and it was dangerous so I underwent chemo radiation for 6 weeks and thank God that its over (at least for now)
Anyway, you might ask why such a long story - well in my heart I always believed that perhaps while performing the RFA I thnk that somehow my ducts were affected which lead to the above drama - I pray to God that everything goes well with you because as far as I'm concern with everything I went through I honestly believe it was less of a risk than having surgery especially when I only have partial right kidney.
I had my second kidney RFA done yesterday, Feb. 6. The first one was done a month ago and has so far proved to be successful. The procedure was VERY uncomfortable and painful for me both times because they were not able to sedate me enough. They even doubled the medication the second time around and I still felt alot during the procedure. They say this doesn't happen often so I guess I am one of the unlucky ones. I too am experiencing alot of numbness in my abdomen and upper thigh this time. They say sometimes the nerves repair themselves over time but is possible to lose feeling. I will be going for another RFA next month undergoing general anesthia.
Hello fellow vhl'ers. This is Kelly in California. I had RFA done on 2 tumors on 4/26/07. Two days later I am up and back on the computer and doing minimal work around the house. It is like getting kicked in the kidney especially just afterward. I was put out under general anethesia and they got both of the tumors they were concerned about. I was so thankful to have this procedure done as opposed to open surgery. I feel very confident and am ready for the next challenge. I had this procedure done at UCDavis Medical Center in Sacramento, CA Just in case there's anyone else who lives in this area who is considering doing this. I would definately recommend it. I do have some numbness in my lower abdomen and upper thigh but I think it's too early yet to tell if it will be lasting. If it is I may need to walk with a cane for awhile. But that doesn't bother me. Hang in there everyone,
Fondly,
Kelly
Were any of your tumors within a cyst or next to the cyst? If so how did they remove the fluid or did they?
This rumor is FALSE. I have heard this one before myself, so I have asked for a formal response from Dr. Linehan, but the informal response is that this rumor is simply not true. They stopped doing the RFA procedure in order to evaluate their seven years of data, which is being written up for publication and looks quite good.
Please remember that NIH is a research program, not a hospital with ongoing services. They do the research, write up the results, publish the results, and educate doctors in the field, who then carry on the work in the real world. RFA is now an accepted therapy available at many medical centers around the world, as the other responses in this stream will verify.
Best wishes,
Joyce
I was reading this discussion and I must be way out of the loop on current VHL stuff. I've got several benign growths on my pancreas, spinal cord, and both kidneys. I've already had part of one kidney removed b/c of cancer from VHL, and I've had a few brain surgeries. I've never heard of RFA. The doc's I have I really like and trust and my current medical plan is in the "Monitoring" stage where every year or two years depending on the location of the growth and symptoms, I have MRI's, CT's and other kind of tests. We live in a very very rural part of the midwest and so there aren't a whole lot of doc's that are even aware VHL exists! I'm starting to think that our next move which may be coming sooner rather than later, needs to be closer to a more urban area with a major hospital and a slew of doc's!
In any event, I've never heard of RFA. Back about a year or two ago when my pancreatic tumors began yanking the pain chain we began trying to find a way to get rid of the little buggers. We were told that more radiation, in the form of the, oh what's it called? Ugh...Brain Freeze...There's a radiation procedure out there that's fairly new and it can zero in and zap the tumors. It's a procedure that would help me tremendously, but I had my body's max of "traditional radiation" back in 2002. We've been told b/c of that, really the only other option is an open surgery. Obviously no one wants to do that so I'm curious about this RFA. Any info. about the procedure and/or doc's in the midwest (IL, MO, IN) that might be familiar would be wonderful! Feel free to email me at my usual hotmal address or leave a message here.
I'm going to try and talk with my nephrologist and neurologist about this and see if they've heard of it and if it may help me in some way. What a blessing it would be if I could even avoid one surgery! Many of us I'm sure have plenty of scars from this disease. I'm sure I do and I don't need any more!
Thanks!
Rebecca.
Inquire at the biggest teaching hospital near you, in the department of "interventional radiology" for someone doing RFA. It is a pretty widely accepted procedure at this point.
For the pancreas, be sure that they are monitoring any solid tumors, as they can become dangerous. If it's just a matter of cysts, you might try drinking Essiac tea (ask at a health food store). Some people have experienced a reduction in the bulk of pancreatic cysts with this tea.
Best wishes,
Joyce
I have had my first RFA procedure and am happy to report that it was successful. I had it under a Local and while it was unpleasant it wasnt to bad. I am due for several more over the coming year, I think that my kidneys will look like swiss cheese by the time that they have finished. Good luck for anyone else having this procedure. Cheers Greg
I'm not sure how close you are to Saint Louis, but my sister and I both have VHL and we love our doctors at Barnes. It's at Barnes Hospital but the division is technically called the Washington University Center for Advanced Medicine. Most of my doctors are located in this building and they are all extremely knowledgeable and up to date on the conditions and procedures for VHL. We were even diagnosed at this location and had our DNA tests done with the geneticist. For a long time we had been so used to hearing doctors respond "Von Hippel what?" that it was such a shock to us when we started seeing doctors who actually knew what we were referring to, let alone how to treat it.
I would recommend my urologist to anyone. There have been several times that my sister and I met with him and he said he was on his way to or just came back from a seminar or a meeting to discuss new techniques and (with our permission) has even brought up our cases for more feedback from the medical community as to the best course of action. My gastroenterologist also keeps in touch with him because if I need surgery they're most likely going to do the kidney and pancreas at the same time. The communication is fantastic here. My gastroenterologist has also brought up my case with other professionals which makes me happy knowing that these doctors put their egos aside and generally want to do what's best for their patients.
If you have the opportunity to see these doctors I would highly recommend it. They are a fantastic medical team and everyone I encounter, including receptionists, is friendly and caring.
My experience with the RFA was a good one. It was in June 2000 and I believe I was the 13th patient at NIH to have it. I had what they thought was a 3 cm tumor which was watched for 4 years and at that point I had to get rid of it. Turned out it was either a dumbell shaped tumor or two tumors that grew together. They treated it with 2 needles and I had some pain but overall definitely reccomend it over surgery. In most cases you go home the next day with a band aid.
I had some tingling sensation there for a while but not all the time. That went away now. It has been successful for me, never had regrowth like some of the early treatments which I think were undercooked, so to speak. Good Luck.
Rebecca,
I live in Illinois. Northwestern Memorial Hospital has a whole staff of VHL doctors. It is listed as a Clinical VHL Care Center in this group, or in a link through this group. All my VHL care is done at this hospital. I even met other VHLers sitting in my Ophthamologist's waiting room. (It reminded me of NIH.) Another main hospital is the University of Chicago. I visited them once, for a counceltation regarding VHL care. I prefer Northwestern Memorial. But, these are two major hospitals Illinois. Check them out if you question the care you are receiving now.
Best of luck.
Sincerely,
Marie
RFA is great but it's for the easy tumours - less than 3 cm and in easy to reach areas. Anything complicated and surgery is still the gold standard. I have had 3 RFA's done. But remember RFA's leave scarring and if surgery is eventually required on the kidney it becomes more complicated due to RFA work done on it. So yes RFA is a good first option if both your kidneys are in place but plan long term.
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