Re: Need advice, (kidney surgery and/or pain management)

From: I and J (ipnewwave@aol.com)
Mon Mar 31 20:04:40 2003


At Mon, 31 Mar 2003, Jayne wrote: >Hi Jayne: Thanks a million for answering. It actually made me smile,
where smiles are rare for me lately. I had a million tests for stones, actually I just returned home to New York from Pennsylvania today. I was hoping for stones. What is even funnier is my mom, put stones in front of her saint last night. Of course it didn't work-- but it was really cute. My double ureters were not detected on either of my C-Sections. I was hospitalized for a kidney infection many years ago and the famous IVP was performed and that is how I learned of this defect. To answer your question about scar tissue on ureters -YES- they can grow there too. I had that removed on my last surgery and the dreaded stent was placed in one of the ureters- UGH, I hated that stent too. Basically on paper I am a perfect speciman of health. In reality, I am in pain 24/7. If I don't have pain medication I cannot even get off the couch and I cannot speak. For some reason speaking increases the pain. I have found vicodin the best- once there is enough in me- I am good for a couple of hours. Percoset, I did not like at all- it gave me heart palpatations. Thank goodness for my husband, because I would not be capable of making any decisions or any doctor appointments. He researches until he makes everyone in this house crazy. He puts up with a lot, I just feel so bad for him, because he worries so much, I just wish that I can have my life back so we can get on with ours. Our two children are in their 20's, so now it is time for us to have fun and participate in adult activities. Have you ever heard of this dr. harry Reesh (probably spelled wrong)? He is in Pennsylvania. We do have an appointment with him on the 8th. I wonder after today, when the surgeon said the surgery is too risky. Do you think this Dr Reesh can perfom miracles? I am not quite sure. My medication is wearing off, so I must go and ly down AGAIN. It was really nice talking to you. Irene

>I feel for you Irene. I have just posted a message to the board about
>my rectal pain but didn't mention my kidney problems as I didn't think
>there was any relationship.
>
>About 1996 I developed a very sharp pain underneath my right ribcage. I
>suffered with it for about two years because I couldn't figure out what
>trigured it. My Family doctor suggested it could be my Gall Bladder,
>sent me for tests and lo and behold it was full of stones so in 1999 it
>was removed.
>
>The surgeon who removed it told me at my post-op visit that my Gall
>Bladder was full of adhesions and said it was a good sign. Dr. Wiseman
>explained to me that he probably meant the adhesions were preventing it
>from rupturing.
>
>So there I was thinking great no pain anymore. Yeah, don't count your
>chickens before they hatch! Within months the pain was back. Again I
>suffered with it for a few months and then informed my family doctor. I
>was experiencing excruitating urethral pain this time. We couldn't find
>anything wrong and I was going to resign myself to the fact that I would
>probably always have this pain.
>
>However, in December 1999 I went for my pre-op for the Vaginal prolapse
>that was supposed to be done Dec 9th but got postponed to Feb 2000. I
>went through the usual blood, urine, X-ray checks. By now the pain was
>radiating down to my groin and it was all I could do to stop from crying
>but I plodded on regardless and prepared myself for my forthcoming
>surgery.
>
>That afternoon, the pain got worse. When I went to urinate all I saw
>was pure blood. It scared the living daylights out of me. My hubby
>rushed me to the ER where they got me in right away into X-ray where
>they performed an IVP on me. (Injection of dye and then X-rays taken at
>short intervals to monitor the flow of the dye). They gave me a
>morphine shot when I arrived and then after the X-rays had been taken
>they told me I would not be going home that night, that something was
>wrong and they needed the Urologist to speak with me.
>
>I didn't get to see the Urologist until the next morning when she told
>me that I would need emergency surgery. I was shocked and when I told I
>was preparing for surgery the following week she told me it would have
>to be put off because I needed surgery now.
>
>Apparently, I had bilateral ureteroceles (in place of the dimples that
>are usually seen as the ureters enter the bladder I had pouches full of
>stones). I also discovered, like you, double ureters on the right side
>and all three of them were full of stones. My urine was already backing
>up into my kidneys which I found out later could be fatal.
>
>So off I went into surgery, the stones were removed, the ureteroceles
>were cleaned out and deflated and I had a stent (sp) inserted that would
>have to remain inside me for at least two weeks.
>
>That stent was agony, worst than the kidney stones themselves. I could
>barely move so just laid down for almost all of the two weeks.
>
>At my post-op check up she told me that what I had was a hereditary and
>that I had the ureteroceles from birth as I did the double ureters and
>she couldn't believe that it hadn't been picked up before 1999, when I
>was 39 and had ultrasounds during my pregnancies, multiple pelvic
>surgeries and so on.
>
>I know this may sound like a stupid question but have you been checked
>for kidney/bladder stones or ureteroceles?
>
>Another problem cropped up on my left kidney recently, they discovered a
>polycystic cyst on the top of it. From what I was told this was
>probably causing the pain on my left side but the pain on my right side
>could be ribcage related.
>
>I don't know whether the type of kidney surgery you may have to have is
>dangerous or not but I would imagine that if it is adhered to your liver
>that it would be pretty risky. You now have me wondering about this
>seeing as my gall bladder was full of adhesions wouldn't the cavity have
>adhesions too? I've not heard of adhesions of the ureters but when it
>comes to adhesions anything is possible.
>
>As I have osteo arthritis & kidney problems I have been on a pain
>management regime for years, sometimes my body gets used to a certain
>drug, stops working and then we have to switch, right now I'm on
>Percocet, after using Tylenol 3's for quite a while. I also take Vioxx
>and Panteloc.
>
>I've just switched to the Percocet and was given the slow-release type
>but I'm having a hard time adjusting to it as there doesn't seem to be
>enough pain killing agents released into my system long enough. ;-)
>
>I don't think I answered your questions but just wanted you to know that
>there are others suffering with the same ongoing problems and we know
>what it's like.
>
>Take care
>
>--
>Jayne
>Canada
>
>At Mon, 31 Mar 2003, I and J wrote:
>>
>>Hi: Hi, my name is Irene and am a fellow adhesion sufferer. My husband
>>has
>>been researching and going out of his mind regarding my suffering. He
>>found this website, and probably has read every single persons story. My
>>constant pain has not allowed me to be fortunate enough to be able to
>>read everything.
>>I have read a few and it helps to know that there are other people out
>>there with similiar problems and I wish I had a magic cure for all of
>>you.
>>I had two C-Sections in 1978 + 1982- Two years later I started with
>>right abdominal pain (under my ribcage). It mimiced Gall Bladder pain.
>>All tests were negative, for 5 years we went from doctor to doctor and
>>what seems like millions of tests-- everything was negative. Finally,
>>in 1986 I found a surgeon who was willing to perform an exploratory. He
>>removed a benign tumor off of my liver and felt that was the cause of
>>the pain. Approximately, 2 months after the surgery my pain was back
>>(at first I did not want to tell anyone). Of course that didn't last
>>too long, In 1994, a surgeon proceeded to remove my gallbladder through
>>laposcopic and had to abandon it and perform open surgery due to
>>extensive scar tissue. In one hospital an ERCP was performed and I
>>wound up with Pancreatitis- the doctor then shut my pancreas down for
>>approximately 5 months (meanwhile- the pain was still there and getting
>>worse). The doctor could not get into my bile ducts, another doctor
>>sent us to Racine, WI to see DR. Geenen (the doctor who founded the
>>ERCP procedure). He was able to get into the bile ducts after a very
>>lenghty test,he stated that he stretched the ducts and said I must
>>suffer from spastic colon. (yeah right).
>>In 1994, a surgeon proceeded to remove my gallbladder through laposcopic
>>and had to abandon it and perform open surgery due to extensive scar
>>tissue.
>>
>>In 1999 the pain returned- even stronger same place plus severe pain in
>>my right flank area. ( I do have a double ureter on my right side and
>>had considerable UTI infections). Again, we went from doctor to doctor
>>and test after test. With of course negative results.
>>In 2001, I started having trouble digesting food on top of the pain. Two
>>friends of the family in PA who happen to be physicians (one a gyno and
>>the other a surgeon) along with a urologist performed an open surgery to
>>remove extensive scar tissue from my bowels, hepatic area, small
>>intestines, ureters, and the surgeon stated he had to rip my kidney off
>>of my rib cage. I was pain free for a year in a half.
>>Guess what???? Yep, the pain has returned but only in my right flank
>>area. We started doctors again, hospital stays and tests. The pain is
>>life altering. I had to stop working and basically live on pain
>>medication, which is hard and embarrassing to ask for.
>>We went back to our doctor friends in PA- who sent us to other doctors.
>>Today I was told that the adhesions could possibly be on my kidney and
>>liver (probably fused together) and the surgery would be very delicate
>>and difficult.Because of this fragile area surgery in this area
>>sometimes are fatal.We're not sure if the doctor really wants to get in
>>there.He stated that he would have to open me and could not do
>>laporscopic surgery in this area and that we would do surgery as a last
>>resort. The surgeon would prefer if I try pain management. I just want
>>it fixed, we do not want pain management that would entail all kinds of
>>medication for the rest of my life. Has pain management worked for
>>anybody who suffers from adhesions?? Also, has anyone had surgery on
>>their kidney area? Is the area really too dangerous to operate on??The
>>doctor also stated that there is a small portion of bowel behind this
>>area of the liver.
>>My husband and I would appreciate any input regarding surgery on the
>>kidney and if pain management works and what does it entail.My husband
>>will probably be sitting by this computer all night to see if anybody
>>can direct us in the next step.
>>Also if possible if anyone has had a similiar problem like this and had
>>Dr. Riech perform his way of operating and technique was the procedure
>>successful?
>>
>>Thank you and we wish you a pain-free night!
>> Irene and Hubby
>


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