At Mon, 31 Mar 2003, I and J wrote:
>
>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
>>