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Re: EBRT/IMRT damage to bladder & urethra

Aloha Pat,

Thank you for sharing this information. I have since looked at HBOT and one site, specifically for rad cystitis indicates an 80% cure rate. If I can get my uro-doc to talk to Dr. Swartz, do you think that Dr. Swartz would be willing to discuss this treatment? And how would I contact Dr. Swartz?

Since the problem began in April, it has continued to get worse. Even my pain management program just takes the edge off of the pain. It puts me in a position of no driving. I would be DUI if caught.

We are in the middle of coffee picking season and will be picking through the end of the year. Any time off for surgery recovery or HBOT would be very difficult.

How many HBOT treatments before seeing some change? How long each treatment? How many treatments did you experience?

Again thanks,
Joe

Re: EBRT/IMRT damage to bladder & urethra

Aloha Pat & others,
I am very happy to report that my uro-doc has agreed to the 1.3 atm HBOT, and has submitted the paper work to my HMO to supply such a unit.
Due to #2 incontinence it would be difficult for me to do what you did using a 3 atm HBOT. I am hopeful that my HMO will approve a portable unit in which I could have a bucket for emergency issues. It would also be impossible to leave the coffee farm for the 60 days that you endured using the 3 atm HBOT.
My uro-doc feels that if HBOT works, I would have 4 to 5 years before needing surgery to repair bladder damage, so I have my fingers crossed. The total cost of this particular unit would be about $15k.
Life on the Hamakua Coast. It is difficult but looking up a bit.
Joe

Re: EBRT/IMRT damage to bladder & urethra

I am the guy from Healing Well that was mentioned. I go by the handle Purgatory as well as David in SC. My bladder and bladder neck was severely damaged by a blotched SRT. I had a SP catheter in me for 11 months, while we waited for some kind of natural healing. It never came. During that 11 month period, I consumed over 1,000 Loratabs to help control the pain. All legal of course. At one point, extensive reconstructive surgery was considered at Duke, but it was ruled out due to the extent of radiation damage. In the end, I consented to the Ileal Conduit Surgery, which I had on 9/23/10. I know have an Urostomy, a stoma, and will urinate through a wafer/bag device for the rest of my life. It was a rough surgery, 5 1/2 days in the hospital, and a slow recovery at home which I am in the midst of. I begin outpatient PT this week. My life will never be the same, but trying to adapt to this new perm. life style. However, by no longer using my bladder/bladder neck with this diversion surgery, it has eliminated all the pain I suffered before, and ended any need for prescription pain meds. I am free to talk about any detail of this ordeal, the surgery, or recovery. Should add, I also had 6 corrective surgeries for strictures, and each of them quickly failed.

Re: EBRT/IMRT damage to bladder & urethra

David,
You an I had an e-mail exchange a few days after I had the SPC procedure and I was looking for some specific answers to questions. At the time I was sent home with no spare parts and had ask you about replacement parts. I did get an answer, but I did not understand what you were talking about and my reply to that e-mail went unanswered.
I have since been able to answer these questions and now have move into a potential new path which may lead to healing which we so desperately seek.
Joe

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