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Tired of Tests Spinster of Oddi Pain
Anyone Else Feel This Way?
Back in November 2001 I went to a Gastro.specialist complaining of RUQ pain that radiated to the back. He performed an Endoscopy;removed 3 polyps and perscribed Nexium 40mg for GERD, ordered a DISADA Scan with Ejection Fraction; (reproduced my pain as soon as it was injected)Scan was abnormal. I then was referred to a surgeon for Lap. gallbladder surgery DEC-18. Had gallbladder removed, no stones, not diseased, Surgeon said it was a "text book" case. I continued to experience pain after surgery, thought it was a "healing process". In MAR-02 I went to my GP for my yearly exam. She took standard blood tests. Called me that week and advised me that my cholesterol was 250 and asked me if I drank much;I don't. She told me my liver enzymes were "up a couple points". In April I went back to my Gastro. Dr. and told him of these results. He ordered many, many blood tests (13 tubes worth) and and abdominal MRI. Suggested Spinster of Oddi Dysfunction. Perscribed Nitroglycerin for the pain and told me to take 2 Nexium vs. 1 for 30 days. He told me he would get back to me if anything else showed up in the tests. Blood tests 5/1 MTI 5/6. To date I have not heard a word from my Gastro. Doc. However; my GP(also received copies of all tests) called yesterday and asked if I was taking any kind of iron pill or suppliment; I am not.What's that about? Also,I had bronchitis 2 weeks ago (Zithromax twice daily)and while on antibiotics pain was pretty much gone, interesting? Nitro also helps (don't like to take it)I am constantly worried it might be more. HELP
Back in November 2001 I went to a Gastro.specialist complaining of RUQ pain that radiated to the back. He performed an Endoscopy;removed 3 polyps and perscribed Nexium 40mg for GERD, ordered a DISADA Scan with Ejection Fraction; (reproduced my pain as soon as it was injected)Scan was abnormal. I then was referred to a surgeon for Lap. gallbladder surgery DEC-18. Had gallbladder removed, no stones, not diseased, Surgeon said it was a "text book" case. I continued to experience pain after surgery, thought it was a "healing process". In MAR-02 I went to my GP for my yearly exam. She took standard blood tests. Called me that week and advised me that my cholesterol was 250 and asked me if I drank much;I don't. She told me my liver enzymes were "up a couple points". In April I went back to my Gastro. Dr. and told him of these results. He ordered many, many blood tests (13 tubes worth) and and abdominal MRI. Suggested Spinster of Oddi Dysfunction. Perscribed Nitroglycerin for the pain and told me to take 2 Nexium vs. 1 for 30 days. He told me he would get back to me if anything else showed up in the tests. Blood tests 5/1 MTI 5/6. To date I have not heard a word from my Gastro. Doc. However; my GP(also received copies of all tests) called yesterday and asked if I was taking any kind of iron pill or suppliment; I am not.What's that about? Also,I had bronchitis 2 weeks ago (Zithromax twice daily)and while on antibiotics pain was pretty much gone, interesting? Nitro also helps (don't like to take it)I am constantly worried it might be more. HELP
Hi, my problem is I trust my Gastro. doc and if he says that it's not a good idea to have an ERCP and I can try and control it with Meds and diet, I will try. It does not bother me every time I eat or dring (yet). I have read so many pros and cons on the ERCP, I don't know what to think. I live in Central NY and I have yet to find a Specialist in ERCP. I am tempted to start from scratch with a different DR. but I don't want to go through all the tests again.
I just with my blood work was ok, it scares me. I had an episode w/my kidney's 2 years or so ago had a trace of blood in my urine w/no infection present but a burning pain. They did a IVP & CAT scan and found 2 spots. Because one was on each kidney and they didn't show up on all views; urologist said it was probably my anatomy, not to worry. My blood work was all normal (back then) I go back every 6 mos. and do a Urine Cytology so far, all normal. Now my Cholesterol is up, my gallbladder is gone, liver enzymes are elevated, my iron is low and I still have this pain. Seems like one thing after another and no one is offering any relief! Thought the GB surgery was the answer.. not.. have a great day!!
I just with my blood work was ok, it scares me. I had an episode w/my kidney's 2 years or so ago had a trace of blood in my urine w/no infection present but a burning pain. They did a IVP & CAT scan and found 2 spots. Because one was on each kidney and they didn't show up on all views; urologist said it was probably my anatomy, not to worry. My blood work was all normal (back then) I go back every 6 mos. and do a Urine Cytology so far, all normal. Now my Cholesterol is up, my gallbladder is gone, liver enzymes are elevated, my iron is low and I still have this pain. Seems like one thing after another and no one is offering any relief! Thought the GB surgery was the answer.. not.. have a great day!!
I agree, I am trying to control it, but IT is controlling me.
I am really considering it though.
Lor was brave.
Talk later!
I am really considering it though.
Lor was brave.
Talk later!
Hi Taylee, I would be scared too; especially when 2 doctors when those levels of expertise in Gastrology tell you they don't recommend the procedure. From what your Doctor's and mine have said combined, you've convinced me to try and control it other ways before I do anything else. On the other hand, Lor feels great(lucky girl) .. makes you wonder..
I too have low iron. Don't know why and no one has said much about it.
It is hard to believe that in NY , you can't find an ERCP specialist. How does one actually know if they are, and HOW really good they are?
I think I am in the best hands possible in this state, but I always worry.
I trust my regular gi doctor pretty much, and he sent me to this guy. Plus he is the Director of the National Pancreas foundation.
He along with my GI dr, aren't highly recommending the ERCP and especially cutting, so that makes me even more nervous.
Well, thanks for your reply.
Keep me posted.
taylee
It is hard to believe that in NY , you can't find an ERCP specialist. How does one actually know if they are, and HOW really good they are?
I think I am in the best hands possible in this state, but I always worry.
I trust my regular gi doctor pretty much, and he sent me to this guy. Plus he is the Director of the National Pancreas foundation.
He along with my GI dr, aren't highly recommending the ERCP and especially cutting, so that makes me even more nervous.
Well, thanks for your reply.
Keep me posted.
taylee
Has anyone had success with a liver/gall bladder cleanse? how do you do it and does it really work? It might be worth a try to get some relief.
Hi,
I used to get relief from Antibiotics when I had the gallbladder intact, but since the surgery haven't been taken any.
I do get relief if I get up and move around too, sitting worsens the cramping pain. I don't have elevated LFT's and had the abnormal hida scan before surgery. (gallbladder was contracting at 95%, which I guess means hyperkinetic).
Now I just have the pain which worsens after every meal and drink.
I can't believe that Dr. said he wouldn't do ERCP anymore because of the risks.
Where does everyone get the nerve up to get it done? I think in my case it is just when you can't take the pain anymore, you decide anything would be better than living like this.
Taylee
I used to get relief from Antibiotics when I had the gallbladder intact, but since the surgery haven't been taken any.
I do get relief if I get up and move around too, sitting worsens the cramping pain. I don't have elevated LFT's and had the abnormal hida scan before surgery. (gallbladder was contracting at 95%, which I guess means hyperkinetic).
Now I just have the pain which worsens after every meal and drink.
I can't believe that Dr. said he wouldn't do ERCP anymore because of the risks.
Where does everyone get the nerve up to get it done? I think in my case it is just when you can't take the pain anymore, you decide anything would be better than living like this.
Taylee
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