| Subject: Re: PKD pain |
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Date Posted: 02:41:52 03/22/04 Mon
In reply to:
patsy richardson
's message, "Re: PKD pain" on 06:01:20 03/19/04 Fri
Hi Patsy! Luckily, I am MUCH better now! There for awhile I didn't think it was going to go away, but it did! It took about 2 weeks after the surgery and poof! One day it was gone! I have done lots of reading on PKD and surfed the internet till I was blue. If you have chronic pain associated with cysts, they should try and aspirate (drain) them first. This is to ensure the cysts are whats causing the pain. This is only temporary and not considered a long term fix. I had my large cyst drained back in December before Christmas but the pain returned by the end of January. Every person is different. You could have relief longer than I did - or shorter for that matter. The next step for chronic pain is a cyst ablation (unroofing or deroofing). I have found several names. The procedure name I found most often on the internet was Laparoscopic Cyst Decortication. The docs go in laparoscopically and cut out the cyst wall. This way is less evasive (spell?) plus if your cysts are large enough, they'll grow back large. As someone with chronic pain associated with PKD, I have been told to expect to have this surgery often in my lifetime. An open surgery with a 10-12 inch incision is not an option. Too much scar tissue. Anyway, studies I've found say the rate of return growth for a cyst is anywhere between 8 months and 2 years. I would suggest that you have the cysts drained and see if that provides any relief. If it does, discuss with your doctor the unroofing procedure. The technique is relatively new and has only been done to treat pain for about the past 5-10 years. The fun part is finding a doctor who does it. I live in Tucson, Arizona and to my knowledge there are only 2 doctors here that specialize in it. You might want to start looking around. If your doctor "blows you off" over the drainage or later the unroofing procedure, go find yourself another doctor. My nephrologist was shocked that I knew so much about my options. He appreciate that and did his best to accomidate my wishes. If you hurt, you hurt and they are supposed to fix us! I hurt continuously before the surgery and it would get worse as my day progressed. Now I pray that my pain won't return at least for a year. I have had 1 or 2 days with some slight discomfort but I haven't had to take any pain killers and thats the best I can ask for! Otherwise I am back to the way I was prior to my pain. I hope this helps you out in some way. Good luck with your doctor and I hope you get some relief soon from your pain. Let me know if I can provide any other info for you. - Molly
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