Wanted To Share A Good Doctor Experience

[MightyMouse]

Hi everyone. I had my upper endoscopy around noon time today and wanted to share with you that I had an awesome anesthesiologist.

She asked me lots of questions about my autonomic issues, the testing I've had done, then said how glad she was to have learned something new today. She didn't know that collagen disorders such as EDS could be associated with autonomic problems. She also told me how nice it was to talk with a patient who is so knowledgeable about the way my disorders affect my body. I told her how nice it was to have a doctor willing to learn and willing to admit what she doesn't know. She took great care of me and briefed the operating room staff really well before I had my procedure.

As for the procedure itself, nothing unexpected--despite being on Nexium 2x a day I still have some gi irritations and have developed some nodules in my stomach and duodenum, which are usually nothing to worry about. My doc biopsied a bunch of them, plus biopsies of the irritated areas. My belly is still a bit painful and my right side still bothers me, so I may end up seeing a doc who specializes in ERCP, but to quote my GI doc "I want someone very conservative who wont just jump to scoping you first." So, I'll see my GI doc next month and we'll take it from there. I'm guessing it's still a motility related issue and probably just part of my whole POTSy/NCSy life.

Nina

[juliegee]

How nice to find a doctor who listens and who isn't threatened by your information- especially given the circumstances ;-) I'm glad things weren't worse, Nina. I have lots of polyps or nodules in my belly, too. What do you know about them? What causes them? Just curious.

I hope your docs won't be in too much of a hurry to do that ERCP, enless you absolutely have to- (high liver enzymes, severe pain, etc.) I had one years ago and devleoped a nasty case of pancreatitis. I ended up in the hospital for weeks. I've since ran into many folks who also developed severe pancreatitis following an ERCP. Statistically, they say 2% develop pancreatitis, but I'd guess that the actual numbers are much higher. I imagine that you've already looked into your gallbladder, HIDA scan, etc.

Feel better. Relax and rest after that nasty procedure.

Take care-

Julie

[MightyMouse]

Hey there Julie. My doc said that nodules happen all the time and are usually just an inconsequential finding.

As for the ercp, I was supposed to have one many years ago with one of the BEST docs in the country. He's since moved to Mayo in Minnesota. Yes, pancreatitis is a known side effect of that procedure... and can be really, really, bad... at worst, fatal. Currently, my liver profile is normal, but I continue to have persistent pain, nausea and sometimes swelling of my right side. I don't have a gallbladder anymore, but my doc and I joke that it's grown back. In all likelihood, it's a dysmotility problem with the ducts.

For now, it's wait and see what the pathologist has to say. If the biopsies don't give us answers, then I'll probably get sent into Philly to see an ERCP specialist at either U of Penn, or Jefferson--both good teaching hospitals. Penn is where my cardio, ent and migraine doctors are located.

Nina

[Eillyre]

What a refreshing experience! It's so nice to deal with people like that who are interested and teachable.

Hope you can enjoy our NJ spring!

Angela

[Sunfish]

ahhhh. i read this when you first posted but since it resurfaced today i figured i'd chime in with the affirmation that it is ALWAYS great to hear the good doc stories. while most (if not all) of us have had varying numbers of not-so-good stories (to put it mildly), it's important to remember that there are good ones out there. generally speaking i've had good experiences with anestheseologists over the years, but it's always good to get nice reports of ANY specialty!

melissa

[sarct]

What a wonderful experience and I just had the same one today.

My doctor had heard of this condition, but was not really knowledgeable about it. I told him I am in the process of seeing a specialist in Ann Arbor and he wants me to have a copy of my chart sent to him so he can read up on it, and learn more about it. Took the doctors name and everything. Said he was going to give him a call and find out more about it.

I was so happy today talking with this guy.

[Maxine]

For those who don't know what ERCP is, here's a link:

http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/

I didn't know what it was, so I looked it up----

Nina, I'm so glad you had such a nice physician. I also had a really good appointment with my GI doctor. He was so kind. He wanted to know more about EDS, so he asked questions. Wow, imagine that! He asked what POTs was, and I told him, what it was, then said it was probably caused by the EDS. I told him he probably won't know what EDS is, but he said he did!

He wanted to know more about it. He felt the EDS affected my digestive tract because I have 3/4 of my large intestine covered in diverticuli, and the giant diverticulum in duodeum---3rd, and 4th portion. He said an endoscopy can't get down that far too see into that part of m duodeum to get a biopsy, so he did an upper GI, and said the diverticulum is 5mm big. This is considered a "giant" diverticulum.

EDS/connective diseases warrent caution with procedures that use scopes. When I went to the EDS study at NIH The doctor felt I might have some other issues with bowels due to the excessive diverticuli. This is outside the effects on the bowel walls from the EDS. She is concerned about inflammatory bowel disease, and said a pediatric scope should be used. She wants me to get a biopsy done to rule that out.

It looks like there can be some pretty serous digestive manifestations from EDS. I have posted about this previously. Any specialist you see should know about your connective tissue disorder.

Good luck, and I hope your biopsies look good. I'm sorry about your motility problems, and hope you have improvement with the motility.

Maxine :0)