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Tardive Dyskinesia Guide

Alison Beaver

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ask: Biliary dyskinesia

By Reruho
 
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I am suffering from biliary dyskinesia or a low function gall bladder. I am trying to get a surgeon to remove it, but he has become reluctant after I told him his exam caused 5 days of pain and made my symptoms worse. I had a HIDA scan and have an ejection fraction of 15%. My symptoms (attacks have become more frequent and my pain has increased) have increased over the years. This has been an ongoing problem for 20 + years.
The surgeon has said this condition does not get worse, but I am not sure I believe him. He is sending me to a psychologist for an evaluation instead of doing more testing. I AM SO FRUSTRATED BY THIS!
I am looking to connect with someone to compare notes.
Reta

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Reruho

I suffer from CRPS also, which causes the insomnia which causes the depression. I hope the psychiatrist will clear me for surgery, I see him on December 15th. I am sure the surgeon is not convinced the pain is caused the GB. I have been cleared for surgery by my Pain Management team and a Hematologist. They have sent him letters with instruction for surgery and aftercare.

The surgeon's fear, which he has expressed, is that he may leave me in pain. He has expressed what he does is permanent and can not be undone. I am more complicated case with my family history of clotting and with this chronic pain syndrome. He is just being cautious and making sure this is the right thing to do.

I will say things have settled down these last few days and I have had some of my lowest pain days. I think it because I have been aggressively treating the pain from the start, instead of waiting to it reached the higher levels. I am over the shock of this new delay and have accepted the wheels of progress move very slowly at times.

I was working on painting my livingroom last week, which improved my mood. My husband told me, "If that is all it takes I will buy you 50 gallons of paint." The room has been a project that I have wanted to do for years but never could figure out what I wanted to do. Also my mother-in-law lived with us and any change in the house was upsetting to her. She died a few years ago and I have started doing what I wanted. This house is full of color. I sit in my living room and just look at the Cancun Blue walls so clean and crisp with a very large smile.

Reta

November 28, 2009 - 2:52pm
Alison Beaver (reply to Reruho)

Reta,
Thank you for keeping us updated, and it definitely does sound (or "read") as though your mood has increased significantly, and your surgeon sounds like he is really wanting what is best for you. It is very healthy to explore all of your options, and as you said, you have accepted your new terms of surgery (waiting until after your psychologist appointment to re-evaluate surgery). I'm happy to hear that you only need to wait a few more weeks, and that you have found activities in the meantime to help you heal/lessen your pain.

It sounds like you have a team of experts helping you, as you mentioned that you have a Pain Management team. What experts or health care professionals make up this team, and how often do you see them? Are they concerned that the pain you are experiencing is not from your gall bladder, or is from a combination of other conditions?

Remember you can "like" your current surgeon, and still get a second opinion from another surgeon regarding your gall bladder and/or chronic pain symptoms.

Please let us know how your appointment goes on the 15th, and what your next steps are (and, you may want to emotionally brace yourself for more delays, just in case).

November 29, 2009 - 8:10am
Susan Cody HERWriter Guide

Thank you for the update, Reta.

A lot of people suffer from depression or insomnia (or both and sometimes one causes the other.)

Are you going to see a psychiatrist and then hope for surgery?

November 28, 2009 - 11:58am
Reruho

It was a simple physical exam, looking for the Murphy sign (which was negative). He felt my abdominal below my right breast and on my right shoulder blade. He was quite shocked when I told him he caused me so much pain. He said an hour but not 5 days of pain. The upper right quadrant ultrasound is painful sometimes. He is thinking there is something else going on. This is a documented issue.

I think part of the reason he is sending to the psych is because I checked I suffer from depression and insomnia, which is caused by another health issue.

I will say I kind of like the surgeon. He called me yesterday to check on me. I expressed my frustration and told him that he had said I have an 70-80% chance of relieving my pain with surgery but I have 100% chance of being/staying in pain without the surgery.

There really isn't any other treatment for this condition. There isn't any medication that takes care of the problem. I have taken Bentyl, which is for intestinal cramping, and it has helped some over the years. I can tell you that it helps right now. It does not eliminate all the pain but helps. That is the only medication I have ever been given for it. I have celebrex, tramadol and vicodin prescribed another pain condition which I have been using.

I try to distract my mind before I use the meds with painting, anything from lightshouses to furniture. I have been known to paint anything that doesn't move. Walking is another one of the things that helps a lot. If it is daytime, I take my dogs for a walk. At night time, I use a treadmill to exercise.

Reta

November 26, 2009 - 6:41pm
Susan Cody HERWriter Guide

Hi Rita

Thanks for your post.

It seems like your surgeon thinks you may either be exaggerating your symptoms or making them up, since he is sending you to a psychiatrist which is really a bit odd since you clearly have this issue and it's ongoing.

It is generally normal to have the kind of pain you had from the initial exam? What did this exam entail?

You may find that you need to switch doctors but if you were in pain from this exam, he may not want to do further surgery for fear your symptoms will get worse. The vast majority of people do find great relief when their gall bladder is removed, however, so it may be necessary for you.

Two questions: what are you doing to relieve the pain in general and have you had a second opinion?

Hopefully some of our readers with the same issues will be able to give you (and others) the benefit of their experiences.

November 26, 2009 - 12:46pm
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