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We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28 We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28

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Unread 01-29-2003, 04:05 PM
We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28

I'm worried to anj....and I'm hard to...

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Unread 01-29-2003, 10:09 PM
Many prayers

I'm so sorry for all you've been through. As I'm writing , I'm praying you will find the relief and the expert care you deserve. Your story with these doctors is a reflection of what so many of us have to deal with in one way or another. I'm a long-time road dweller, lurking her again because of a bladder sling surgery set for Feb. 26 after months and months of urologist hell. Your posts, experience and support have helped so many here. I applaud your courage. We can all be strong for each other when one of us feels weak. I am keeping you in my prayers.
Love, Light, Blessings
Unread 01-29-2003, 11:54 PM
We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28


I'm sorry to be so late to this discussion, but the thought that comes to me as I read everyone's posts is that you really need to keep your care inside the tertiary care system, i.e. Vandy. The constellation of problems and your history are going to be intimidating to the average community physician, and they're doing you a favor, in a way, by telling you that they can't help you.

Further investigation should be done, though, you're right: they can do various "interventional" radiology procedures to evaluate if the gall bladder is obstructed and possibly even "snare" the stones that way. Only Vandy is likely to have the experience with that sort of complex procedure. It does sound like most of the docs are hoping you can "wait out" this bout of pancreatitis so they don't have to do anything invasive. But of course, with the RSD and fibro flaring under all the stress, there is that all too familiar vicious cycle of pain and inflammation.

But since you have "friends" at Vanderbilt, I would suggest that you just try to keep all your care there. I don't know how far it is for you, but one long, productive visit there would more than make up for all this seeming fruitless running around that you've been doing.

About the records, to everyone, a word of warning: Congress enacted some very stringent new privacy laws under the HIPAA act ("Health Care Portability and Accessability Act") which took effect January 1. In protecting everyone's privacy, the paperwork is so daunting that it seems for the moment to be inhibiting the flow of information (which in fact it was designed to do, but that can be a complicating factor). I now must have my patients sign at least four forms each time

And Anj, I thought you did have copies of your op notes? If you don't, now it's time to get them, as well as a copy of pain management consultation. Given your history, these are documents that you should keep on hand for yourself.

I hope you get some answers, and soon. Please, though, don't let anyone operate until there are some more answers. And it's possible that no one will want to operate anyway until the acute pancreatitis is resolved.

A couple of questions, Anj (and, unfortunately, I won't be on until tomorrow night to see your answers): are they following your serum amylase (this is something the PCP could do); and, with the weight loss, etc. are they following electrolytes, calcium, and magnesium?

My mom had pancreatitis and she was put on clear liquids for a week, given pain meds, and her amylase was followed. But the surgeons did say that surgery was not advised until the acute inflammation was over, which could take some days (it was about a week and a half for her, and she was sore for a month).

Anj, I wish we could be with you, advocating for you and holding you up. These cyber s and ers are the best we can do. I like MeDH's idea of picketing the ER. Here in California, even the ER often isn't an answer...hospital beds fill up faster than we can staff them, it seems!

Anj, I'm thinking of you. G-d be with you, and know that you have the fighting spirits of each and every one of us with you. It's scant comfort on sleepless nights, I know, but maybe on some primitive biofeedback loop somewhere, it helps keep you going...

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Unread 01-30-2003, 07:44 AM
Of course you all keep me going...

That's the beauty of this part of the boards. The Road is special in that we can all learn what we're desperate for from other women who've been there or are going there. We get "information" that we wouldn't get elsewhere. And compassion galore!

I'll forever be greatful for that.

Now to answer the questions:

The surgeon exchange towards the beginning of this post WAS at Vandy.

First: My GP sent me to a small town, new surgeon. I didn't feel he could do my Surgery.

Second: So, I went to another big-city hospital where the surgeon was overzealous and told me that even with an 8 inch incision all I would need despite my other problems was Motrin and I should expect to go back to work in no more than 2-5 days. I asked about complications and he said: You can heal at work as easily as at home. So that one was quickly marked off my list.

My healthcare is so complicated so here's a breif outline of it:

When I finally got the RSD/FMS/Residual Endo/Ovarian Remanant dx's, this was when I went to see a doctor (Pelvic Pain specialist) who has a three pronged approach to care: Pain Mgt, Pelvic Pain Specialist (GYN+Pain Mgt), and Psychiatry. Since he's almost five hours away - he agreed to coordinate my care using doctors in our largest City - six hours away from him, but 2 hours away for me. Nashville - Where Vandy is.

After searching six months, I found someone at Vanderbilt to coordinate my Psychaitry, General Health, and Pain Mgt. He is now the Chief Resident in Psychiary and worked in Pain Mgt/Anesthesia for 12 years prior to that. That's the one I refer to as: Miracle Worker Doc.

I have ALL my medical records on hand. They're literally in boxes. I have my surgical reports in chronogolical order as well as all the invasive testing and treatments that I've had.

Third: The Miracle Worker Doc got my GP records (from small town), the serum analysis, and the Ultrasound recs from the last month and a half. He is the one who refered me to the um-hmmmm-DOCTOR/SURGEON listed on this thread in the "verbal exhange" that I posted. I was in his office when he spoke to him. He told him of all my previous surgieries and current conditions. He told him that I was a "difficult case" and that he was referring me to him because he'd asked him for a favor a few weeks prior. The good surgeon agreed to see me and said that he felt he could perform additional tests and find out exactly what's wrong and performing my surgery wouldn't be a problem at all for him. He noted that his staff would be in touch. They called me the day BEFORE I was supposed to go down there for records. I faxed all of my post-operative notes to his office and filled out the appropriate forms for recent records (My GP, the ultrasound, the blood work - I've had two sets done so I authorized both of those). Because the additional surgical notes was not something he was interested in at the time - evidently they were trashed. And the ultrasound records were lost before I got to the office. They had to turn around and call while I was there and my GP's office went out of their way to get those faxed within a 10 minute time span. And then I saw the doctor who asked for the very things they'd disposed of.

I told him about that, and he said that he wanted the records to come from the doctor's offices. Ok, but two are retired. He said, "Well get what you can from whom you can".

However, he made it very clear he wanted NOTHING to do with me. I made him come right out and say it. I was PO'd. The office led me to believe I would be given tests that day including a fluoroscope. The doctor discussed that with my Miracle Worker Doc as well while I was in the office. So I went down there without food or water. Then I got there at Vandy to see him and he did a big switcharoo on the attitude. I reminded him that my doctor had referred me. He said that he didn't feel he could help me. That was doctor speak for, "I could help you, but I don't want to because you're a bigger risk than I thought and you're not going to treatm me like I'm a God and you ask too many quesitons".

Sometimes it's the way people say things and what they don't say that tell you the most. He was reeking of regret for ever taking my case in the first place. Why else would he send me on a wild goose chase for not only my post op notes and testing results but EVERY GP and specialist that I've ever seen and "Every record you've ever had". And then make me an appointment for two months from now! The lady at the front desk said, "Are you sure you want to wait that long". And he replied, "Yes. She's probably going to get someone else to refer her to another doctor as we discussed". And then he walked off. He has no intention of reading it all. I told him it was in boxes and I'd have to fax it because I can't carry it all. He said, "You'll have to discuss that with the people up front".

I, too, thought Vandy was the best place for me until I saw someone there. If they refuse to see me, what else can I do? I don't want to wait until this is a true emergency and I get the "hatchet job of the week" when it's infected and blocked. That's what will have to happen is I'll have to wait until the ducts are blocked and my life is threated before they'll do anything.

I don't want surgery. It's the last thing I want. But I'm losing weight at a rapid speed and getting weaker by the minute. I fainted twice yesterday...and fell asleep several times just sitting up. I'm as white as chalk and cannot eat. I don't feel like jousting windmills with these people anymore. I'm too weak and tired and sick.

I'll see my doc on Friday, and if he has no answers. I have no choice but to wait until it's serious which is the OPPOSITE of what my GP told me.

My GP said (as did Miracle Worker Doc) that the infection would have to be cleared up first - which took about four weeks. I think it's coming back now. I really do.

They've done blood work. I'm not sure what all he ordered. I normally ask for the results but I'm so weak, I just don't care anymore. I don't have the energy to read it all and try to make sense of it. And frankly, that shouldn't be my JOB. Especially after what I pay these 'people'.

I asked Miracle Worker Doc last time I was in there what he thought about me going to the ER. He felt it was a bad idea. Coming from someone who's seen it all...I have to respect his opinion. That may change, but I notified him of the difficulty I had with the surgeon he recommended and that I was getting worse but he said he'd see me Fri and that he didn't have anything earlier than that.

So...I guess it's wait it out until tomorrow.

Fourth: Nobody's following anything because I cannot get anyone to see me. My GP passed me off to the surgeon who passed me back. My GP doesn't have access to all the "toys" a surgeon would have and neither did the small town surgeon. And the surgoen who did have access refused to treat me.

If I had the energy. I'm sure I'd be irate. But for now...I'm just exhausted and flat broke. Beam me up...
Unread 01-30-2003, 08:31 AM
We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28

Angie, with you fainting twice and falling asleep while sitting up, it sounds like you may need some immediate medical attention.
I am not a medical professional, but these symtoms sound frightening to me. If I read your post correctly, your appointment on Friday is two hours away? If so, please don't drive yourself.
What if you faint while driving? Do you think it is possible to see your local GP today? To my lay ears, it sounds like this may be an emergency situation, so I would think your GP would see you today. In fact, I do wonder if he will take one look at you, and admit you to the hospital??? Do you think your current
symtoms could be life threatening? I will never forget your
precious story about your little one buying you a necklace.
Please do not take any chances when it comes to your health,
especially for that special little boy who adores his mommy!!!!
I hope you will have someone driving you the two hours on
Friday. Again, I wonder if you will be immediately admitted to
the hospital??? Finally, I am curious if the original doctor
five hours away who diagnosed you is at Emory in Atlanta?
They do have an outstanding medical reputation. What do
you think about calling this doctor for a referral or recommendation? Do you think he will talk with you?
I am praying for you, Angie. I would like to post this prayer
request on the prayer board, but only with your permission.
I do not need to use your name. My feeling is, the more people
praying for you, all the better!
Please seriously consider seeing your local GP today
to determine whether or not you are in a life threatening
Unread 01-30-2003, 08:42 AM
We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28


As I sit here, shaking my head over all this, I just have to wonder about Vandy's surgery department. This one surgeon can't be the only surgeon around there, can he? Can you talk with the department administrator there about your treatment?

In the meanwhile, I do hope that you've talked with your PCP about both the runaround you've gotten and to keep up the "maintenance" labwork. I understand too "high-risk" but frankly, the Vandy surgeon's attitude could get him seriously "busted" should Vanderbilt administration get wind of what happened.

Anj, I'm sorry that I didn't read your earlier posts more carefully, but it sounds at this point like you need admitting to the hospital (somewhere!) and IV fluids, possibly antibiotics to get through this. You're going in to see the GP tomorrow, right? Hee could admit you, at least for management of infection and your electrolyte imbalances. Much as I hate to say it, I think admission is going to be the right thing to do for you -- fainting, not being able to eat, all of the above is just too dangerous to treat at home.

Anj, I wish I could be there to plow through all of this on your behalf. Is there anyone who can help you, by advocating and/or by just sitting there and screaming until you get the help that you need? And does your GP realize that you've, as you put it, fainted twice, etc.? Standard of care around here would be hospitalization...surgery down the road maybe, but at least control over the acute process, since you obviously can't take care of something like this at home!

If I had the money, sweetie, I'd be on a plane out there to raise some . You're in my thoughts, and in my prayers. I hope Miracle Worker Doc can get you admitted -- or get your GP to admit you -- so that you're somewhere safer than home to get through this until it's safe for surgery and you're strong enough to heal.

Gotta run out the door to work, but I wanted you to know I'd not forgotten you in any way...and I wish I could do more than just these cyber s...

Unread 01-30-2003, 09:21 AM
Thank you both! I can't believe this myself and I thougt I'd seen everything!

Every standard of treatment and every terrible flaw in the medical care system. While the US may be the BEST in Emergency Trauma treatment - the standard of general care is horrible. At least from my perspective!

I wish I had you here too Audrey. I'd sure enough let you plead my case!

I'm concerned about Vandy as well. This is not the first time I've had a "run in" with someone over there. The receptionist at the Pain Clinic at Vandy curses at people on the phone and intentionally destroys records. Everyone knows about it and I was warned about it before I ever went over there. Sure enough, she called me and started cursing. It was so bad that I had to wait until after hours to call and leave a msg with the doctor there. She found out about it and called me back at work and threatened to make up a lie so the doctor wouldn't see me! I kid you not! I swear this happend (I have witnesses). I reported her to the Advocate at Vanderbilt. Luckily I had the first message on voice mail. And the second time, people in the clinic overheard her (I don't know how they couldn't!).

Anyway, nothing ever came of it. Miracle worker doc reported her for 3 things on seperate occations. He says it's impossible to get fired from there unless you "cost them money" in a lawsuit.

I think he's right.

I wish I had the energy to report him. But I just want to get well. I need to pick my fights right now.

My appt is Friday 1-31-03. I have a driver. No, I can't drive that far by myself. I can barely make it to work ok.

I tried to get in to see my GP this morning. They don't have any slots and he can't see me at the ER (he's not on an ER roster).

Yes, Miracle Worker Doc, knows about the fainting, etc.

I literally BEGGED them to admit me when this all began. They said the best they could do would be to give me some time off and antibiotics and refer me to a surgeon. That was that.

It ended up being 2 weeks off.

But, I don't think it helped much. I'm not any better.

And as you mentioned above, Audrey, I'm still sore!

I'm taking the day off tomorrow. My brother will drive me down there. He's taking the day off too. He's going to go in with me and "be ugly" as he says. I hope it works.

Locki - I'll never forget that either. And prayers are always welcome!
The doc who dx'd me a couple of years ago was from Memphis. He has an Excellant Rep - his name is Dan C. Martin.

When I was off those two weeks, I didn't get much rest. I called literally every doctor who's been treating me to find out what I'm up against. My neurologist couldn't really treat me but he gave me some cautions. My Memphis doc said he couldn't do it but that I'd better find someone knowledgable fast. I called my pelvic specialist here and he said he doesn't do gall bladder surgery or anything above the belly button. And of course you know about the surgeons.

I feel like a pawn here. I've waited almost a month. I can surely wait one more day... I hope.
Unread 01-30-2003, 10:14 AM
We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28

Angie, I just posted a prayer for you on the prayer forum, but
I did not use your name.
I am glad you called your GP today, but not pleased that he could not see you. If you think you are in any immediate
danger today, then please have your brother take you to the ER.
Otherwise, prayers will be following you tomorrow to see
your other doctor! Please keep us posted. There are many here
who are very concerned about you. Angie, you have touched the hearts of many here!
Unread 01-30-2003, 10:59 AM
We're right here for you, Adrite (Angie) - Appointment with new surgeon - Jan 28

All your sisters here are ing for you. We will be there with you tomorrow holding your hand the whole way I will be yelling at all those doctors from down here in Texas to please help and fix our friend!
Unread 01-30-2003, 12:57 PM
Doc's office called me...

They want me to come in and see the nurse practitioner for tomorrow morning. (more bloodwork). I hope they can recommend a better surgeon this time!

Just fyi...

Please keep praying...


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