Why do you think some doctors will not just say something like" Sorry, but I am not knowledgable enough on your condition" or" That is not in my skill set " that one is regarding surgeons.
I have been dealing with non-Chiari issues with lower belly pain..had the million dollar work up and nothing showed up that would explain the severe pain and weight loss.
ONLY 1 doctor had the professionalism to tell me straight out.."That kind of delicate surgery is beyond my skill set'......I wanted to hug her..I did tell her i so appreciated her honesty.
Another sureon that came in to my room (I was in the hospital) for a 'consult'..He said that "Adhesion do not cause pain"..I explained that I had the same exact Sx's 8 yrs ago and had them removed..out patient and was good to go..no issues til late August of this yr. He just shrugged his shoulders, wished me luck and left!
I told my GI who had me admitted to the hospital and he grinned when I told him about how the male doc said adhesion do not casue pain. My GI is the best..."I have your back and will set you up with a great surgeon in Rochester, call me Monday"...That was on a Saturday.
Monday I called early in the a.m......sure enough, an appt was all set up at the best hospital in my area..Strong Memorial in Rochester, NY
Sorry this is so long..but why can't NL's just say to us Chiarians ,' Hey, I have really no experience with Chiari...you should see a NS"
Instead , the NL's I told me to 'come back in 6 weeks and we'll see how you are doing!'
A bit of a rant.sorry......any of you guys feel the same way? had similar experiences.
I just thank God that there are still docs out there that truly care and have passion.
I wish I knew! I have repeatedly had this problem. The first time was when I was having gallbladder pain, I kept getting dismissed because I didn't have gallstones. They kept saying it was probably gas. I kept saying why does it always hit in the same spot under my ribs? Finally 5 years after I started having attacks a doctor ordered a HIDA scan and found out my gallbladder was non-fuctioning!!! Then it took almost 5 more years and multiple doctors to discover that the reason my gallbladder quit was because I had celiac disease.
Now even my regular doctor doubts my celiac diagnoses. She keeps saying to tell her if I have stomach issues again because she wants to order another EGD and I keep saying as long as I eat gluten free my stomach is fine!!!
As for the chiari she believes I have it but was terribly against surgery and keeps saying that she doubts it will help. She says she still thinks it could be MS and would feel better if I had a spinal tap!!! My MRIs show absolutely no sign of MS. I was very pleased when I saw her a few weeks ago to tell her how many issues were improving post-op!!!
Yeah, my NL told me that Chiari could not be causing my extreme fatigue and to have my PCP start looking for other causes (been there, done that... several times). My NS was much better, but I'm still a bit doubtful of him. We'll see after my second appointment though.
I love my PCP though. He admits that I definitely know more about Chiari than he does cuz I'm only his second patient ever w/ the diagnosis. He's just trying to get me in the right direction to be helped. :)
I have no idea why that happens. The last NS I saw had all my charts, MRIs, CINE MRIs, etc and called me in just to tell me he didn't want to accept me as a patient! Why have me come in for that, especially when I've been restricted from driving and had to have someone else go out of their way to bring me to the office? A phone call would have been sufficient! Oh, right, because a phone call doesn't make them money. :P Some doctors are not in the business for their patients.