I saw my original bariatric surgeon today at Tufts in Boston, MA. (Remember my last post about this.)
If you recall - I was contacted by the doctor himself- because someone from the internet (Hi!) contacted him about ME. That person suggested to him that he should check in with ME. He did, and asked that I make an appointment with his NP. I didn't do it immediately. I was pissed that he suggested seeing a nurse. I need a doctor.
Instead, I called another hospital's bariatric program atBeth Israel Medical Center, and asked about getting seen THERE, they asked me for $500.00 and I passed on it. That hospital has been suggested to me over and over again by my MIL because she Loves Her RNY with a passion.
I went today to the original surgeon - after calling the other day - and telling them I had "an ulcer." I was surprised for the actual appointment with a doctor! (Though I will note that the doc said later, that "I can always get an appointment with him, " this, after he told me to "make appointments with the nurse.")
I weighed in (GASP!) and went in the room and chatted with his assistant.
She asked, "So, you're here for some stomach pain?"
I explained, that yes, there was burning and pain, but it's intermittent, and I thought it might be an ulcer. I told her that the pain was the real precipitating event to MAKE THE CALL (again) to see a doctor. This feeling was NEW and EXCITING and might be worth a look.
"So, there's more?" she asked.
I share that it's a long story, but what does she want to know? She looked terrified.
I explained my very quick history, pretty much LIKE THIS - which I had done - one year ago in the same place -
- RNY gastric bypass 4/2004
- Miscarriages 2005/2006
- Pregnancy 2006
- Vitamin issues
- Anemia > iron infusions (Initiated by the OB/Midwives!)
- reactive hypoglycemia
- neurological symptoms
- complex partial (was thought to be a stroke)seizure on the birthing table
- continued neuro issues
- continued hypoglycemia
- visit to the PCP who > sent me to PSYCH > who diagnosed me with cognitive disorder and memory issues "likely from RNY gastric bypass"
- continued neuro issues
- grand mal seizure in front of plastic surgeon at BIDMC
- testing, no diagnosis, issues continue
- grand mal seizures continue until 2/2009 when I was put on Phenytek during 2nd hospitalization
- complex partial seizures continue daily (currently)
- neuro issues continue
- weight gain
- hypoglycemia continues
- "ulcer" feelings begin
- Here we ARE.
The assistant takes as much of this as she can with pen and paper, nodding and empathizing a bit. "Wow." I know it's a lot - but I cut it down as much as possible.
She suggests that they'll "send me home with ulcer medication," and "set up an endoscopy, let me send in the Dr."
"Hi! I'm Dr. So and So." It's been a long time, he has no idea who we are. (Mr and I are both patients of his.)
He explains that our files have been archived, and he doesn't have any history on me. I repeat the run-down of issues, much briefer, as he isn't having it.
He tells me that hypoglycemia is a dietary issue, and to "follow the prescribed diet," to cure it. I explain that I've been there, done that, worn the CGMS. "And it didn't stop?" Uh. He goes on to say "diet." And, that is simply it. Go on a diet. He also suggested I "see a dietician" (for the umpteenth time) and his endocrinologist.
That topic dies, I tried to discuss more, but, he wasn't having it.
And, he made me feel like I was a complete moron, and a hypochondriac. Which is funny because I avoid going to the doctor for anything, and I shrug off most illness.
He goes on to say there is NO REASON for seizures due to gastric bypass unless there were VITAMIN DEFICIENCIES.
He asks how my blood labs have been.
My last draws were decent, aside from Vitamin D, as far as I know. These were taken within recent months. He says he'll pull my labs from my last visit to their clinic, which was LAST YEAR. (When I saw Dr. Stiles, who was suggested to me from Dr. Jacques from Bariatric Advantage, and she's gone.)
I ask - "Is it possible that an UNDETECTED deficiency at some point could have triggered enough damage to cause seizures that continue NOW?"
He says, "I'm not a neurologist."
I ask - "But, is it possible that an UNDETECTED LOW THIAMINE level at some point could cause seizures that continue?" He said, "Yes."
So, seizures COULD potentially be caused my undetected vitamin issues? Yes, but... He asks, "Have you had follow-up and labs drawn?" I say that I have been to hematologists, endocrinologists, PCPs and OBs, so YES I HAVE. (So, I'm a liar.)
He addresses the pouch pain, and I'm to have an endoscopy. /end topic. The nurse said things like, "fistula" and yummier issues. I still say, simply, "ulcer." I have an appointment for the procedure.
Then, he addresses weight.
He asks, "Is your weight stable?"
I say "No. I was 150 lbs. -- I've gained XX lbs in the last YEAR."
I add on that I feel that it's triggered A LOT by eating to control the blood sugar, in conjunction with brain-numbing drugs for seizures. He completely disregards this, and tells me to "diet." They're going to "teach me" how to eat the "right things." (This might be where I started to lose it.)
I tell him that I feel that I struggle EXTRA because my sugar tanks regardless of intake, and I am constantly feeding the beast. He tells me to "diet."
He was starting to try to wrap up the conversation - and I just ASKED - "Could he reverse my RNY?" He flat out said no. He said, "You can't undo it. It's done. And, it's just not that easy. And if I did, you would regain everything." I said, "My quality of life is THE SUCK (basically) does that make a difference?" Nope.
I ask about revising. Could I have a duodenal switch or a band on my bypass to slow down digestion? He looked at me like I kicked him. "Wait, you want what?" No, "we can't do that," or something else, basically trying to explain to me that it's just not something that surgeons DO.
He ended the appointment. No lab slip, no testing, no suggestions, no empathy and ZERO answers. I felt like I wasted my entire day, DH took the day OFF with one day notice, the 1+ hour drive, the parking garage and co-pay entirely, and I left.
Bob and I discussed on the way out, that it was Much Nicer when we went in there at 320 and 370 pounds respectively and were preparing to have weight loss surgery, the sales part is a lot different than the return part.
PS. It's ironic that this post has Google ads for their program below. LOL.