Merrill Posted January 11, 2005 Report Share Posted January 11, 2005 Hi, Em. Is your physician (PCP) also a surgeon? I'm a little confused ... Also, do both physicians / surgeons work out of the same hospital? This is an important question, obviously, but it may not make your choice easier. I've never encounted this "pick a surgeon" question before ... and I agree that it complicates matters and can up the ante on your stress level. (My surgeon was my fertility specialist who diagnosed me and followed me case from the beginning...he had also already done a twilight-sleep procedure on me, and I liked him enormously.)You really like and trust your PCP, right? He's been there for you all along and "gets it" when it comes to your POTS care? (Tho I know you have a long distance advisor there too...) Is he the second surgeon--the one you're seeing in the morning? Hmmm...Well, I guess like everyone else has said, go with your gut ... or in this case, your GB. good luck tonight with your eating ... I hope your doc gave you some advice about the kinds of foods you might be able to tolerate. nina had some too.take care,m Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 12, 2005 Author Report Share Posted January 12, 2005 hello all!you are all really keeping me going (seeing as i can't turn to food! he-he)...geneva...right on! thank you for the ego boost! wow! if it makes you feel any better...i'm scared of a colonoscopy too! i put it off too..but now i am glad that i did b/c that doesn't seem to be the problem! i know you are right...i'm prepared and i've done my research.tea...i know you are also right on about the 'universe' telling me something. i have done a lot of praying and focusing on that since this started. sometimes when i don't feel well it is hard for me to say 'thank you' to god...but this time i can say that much easier than i can surrender! i have felt so loved and nurtured through this entire process it is just absolutely AMAZING! i am so blown away. yesterday, i went to the person who does my energy work/PT (b/c i can LIE there the whole time and she is so wonderful and she helped me talk through my fears about surgery...i was bound and determined to get there)...and she even offered to come to the hospital or to my house after the surgery to help clear up the anaesthesia effects and start the healing after surgery! i see that i have this opportunity to choose my surgeon, i have information from my pots doc on what he feels i need during surgery, and he is available by pager for the surgeon to call. i could go on but i won't! i feel blessed even in the yuck of this all!merrill...what more to say??? you bless me big time too! and everyone else who offered tips...i'm not forgetting you either! i'm grateful for every word.so...mom says she doesn't like looking at me right now b/c it makes her feel so bad b/c i look so nice and celery green! she is cracking me up. asher doesn't care, my face is still lickable to him. i'm feeling so much calmer from you emails and know you are all so right about everything. i will go to both appts. tomorrow and if i can still hold my head up afterwards, i'll definitely post! k?whew, that was long...sorry!thanks for nurturing me so much...emily Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 12, 2005 Author Report Share Posted January 12, 2005 hey all...if you are reading...please, please say an extra prayer for me this afternoon...mom and i went to the first appt. this morning. and we walked out on the dr. i have never, ever done this or ever been this upset...close, but not this upset that i have actually walked out. i usually stay calm and polite and all that jazz but i couldn't do it today. i told him i wouldn't be comfortable with him doing surgery on me and left. he didn't want to do the surgery anyway i don't think. somehow he thought i was there b/c i thought if he just took my GB out i would get rid of my OI??? i never said that! he says he doesn't think my GB is the problem and didn't want to do the surgery. wants to do a scope, etc. etc. he is in the same practice as my PCP...my PCP said i needed surgery, and now i get to the surgeon and he says no, i want other tests run. i said, okay, but how fast are you going to do this??? well, in a week or two! then get the test results, re-evealuate, etc. etc.i have to pull it together to go to the next surgeon appt. okay, i am not summing this up very well. sorry. but he was hostile. i left in absolute tears and crying. i told him i never came there telling saying i thought this would 'cure' my OI! he's also saying, well you've always had IBS, this isn't something new! oh my. if i wasn't sick to my stomach before, i am now.going to try and BREATHE, BREATHE, BREATHE. and meditate.thanks for listening. i'm a little beside myself. i never anticipated something like this.emily Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 12, 2005 Report Share Posted January 12, 2005 Okay, here's what I suggest. Get all your anger out and pull yourself together. YOU MUST FIND AND USE YOUR STRENGTH! I really do understand that this next step will be very hard but you must not allow yourself to loose your composure!You are a thinker and a planner. Think through all the next questions and be prepared with calm, logical, factual answers! If a doctor says did you have IBS? You say no! I was misdiagnosed! I have secondary bowel problems from my dysautonomia!If you need a moment to compose yourself or to think just say to the next surgeon, give me a moment please.Do not waste your precious energy points on this self important, ignorant, quack of a doctor!!!Emily, please move on...TRUST that all is happening as it should...just be mindful and prayerful.I am sorry I don't live close enough to accompany you! hugs, tearose Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 12, 2005 Report Share Posted January 12, 2005 {{{{{{{Emily}}}}}}}}}}I'll just sum it up, some DOCTORS SUCK!!!!!!But, let's move on and catch some postive vibes!! You'd be proud of me, I managed to, too! I got an appt for Marissa at her PCP office and they're going to take a look at her for me. She is still telling me how much her belly hurts. She was relieved. Isn't that sad?! I pray that your afternoon appt goes well and that dr isn't a jerk too. If he is, there's more fish in the sea. You WILL find the right one. Don't worry. You don't want an idiot operating on you anyway!!! And, the way I look at it, if worst comes to worst, you can always end up in ER needing "emergency" surgery and God will guide the best surgeon to you!! I know that sounds off the wall, but I believe everything happens for a reason.Sending you healing thoughts and good thoughts for the "next round"!!YOU CAN DO IT!! Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 12, 2005 Author Report Share Posted January 12, 2005 thank you tearose and mary...i focused on what you said during my second appt.i am back from it and as you understand...i'm outta adrenaline now, and am gonna go crash in my pink PJS for a while.so the news:I WILL NOT LONGER HAVE A GALLDBLADDER AS OF NEXT WEDNESDAY!MY PRE-OP IS SCHEDULED FOR FRIDAY.i understand that i am not in enough distress yet (not enough pain and no vomiting to require emergency surgery) but...it is still hard to wait! but, really it is only a week...and i can do it! i feel sooooo relieved. aaaaaaaaaaaahhhhhhhhhhhhhhh....this surgeon is the person everyone we talked to is crazy about. he is very gentle and kind. he said in anyone else he would say 'take out the gallbladder' but, in me he was using caution...in the end though, there does not seem to be any other possible culprit of my problems, so we are gonna take it out!i guess the universe worked out all right in the end huh? AND...i told him that i would be much, much more comfortable with the surgery (since he didn't have a lot of familiarity with POTS) if he spoke with my POTS dr. SOOO, he paged my dr. while i was there, and came back in the room to tell me that he had called right back, they had spoken and both felt good about the surgery!i'm in good hands! my pots dr., though out of town, said he could be paged if anything came up during the surgery! okay, i know you are all sick of my babbling now! sorry! i'll stop now that things are settled!thanks a bunch!emilyp.s. just remember...this was a HUGE reminder about standing up for yourself and how important it is. the first surgeon kept saying 'what if i take your gallbladder out and it doesn't fix anything.' he said that the negative u/s and CT scan showed that, blah de blah. the second surgeon said that while we can't be 100% positive that it is causing it, there is no other possible cause right now. and he took the HIDA scan seriously.so, to those of you who are battling the drs. right now...i hear you! i'm still blown away by every bad story i hear. please, please, though...follow your gut and keep fighting! and of course, come here for an ego boost if you need on and we'll all boost you up before your appt! Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 12, 2005 Report Share Posted January 12, 2005 oops Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 12, 2005 Report Share Posted January 12, 2005 Hi Emily,Congradulation for standing up for yourself.Try to relax as much as possible to keep your energy for the surgery.Good luckErnie Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 13, 2005 Report Share Posted January 13, 2005 Hip Hip Hurray!!!And to think, you did it all by yourself! He's a keeper!! He even called your POTS dr??!!! Did you kiss him??Best of luck with your surgery! I will keep you in my prayers. Just seeing how he dealt with things, I know it will go smoothly!!Time to relax and try to eat again.take care Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 13, 2005 Report Share Posted January 13, 2005 Em, good for you!!! I'm so glad that you're getting the help that you need Nina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 13, 2005 Author Report Share Posted January 13, 2005 no, i didn't kiss him...but i SHOULD have! yes, he and my POTS dr. spoke while i was there! mary...i am hoping you are going to find a gem of a doc for your daughter soon...i am sure i have a 'repuatation' in this town by now for dr. shopping...but it is not about your daughter! it's about them! grrrr....your poor little marissa...i hate ANY suffering, but especially children. i think they too often dismiss everything as psychological or as 'just part of POTS'--that is what i come up against. if something new arises...even this...it was 'just POTS' and i know they think i am a hypochondriac (based on WHAT?) when i was 6 we went through a similar situation with the drs. saying that i was 'acting out' b/c my parents were separated. but YOU are the MOMMY and that makes you the expert. plus you have a background in psych. it is so maddening. anyway, prayers back to you...i should have put this in the other thread of yours! oops!emily Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 13, 2005 Report Share Posted January 13, 2005 What a relief Emily! Maybe you'll get a some good sleep from the expenditure of all that energy!I am very happy for you!keep taking things easy, tearose Quote Link to comment Share on other sites More sharing options...
geneva Posted January 13, 2005 Report Share Posted January 13, 2005 Emily, I am just now catching up on your news and my 2 cents are: do NOT waste even ONE more minute thinking about the 1st appointment. You handled yourself beautifully my friend! Now keep all your strength for next week. hey, my GI doc is admitting me to hospital on the 19th too! (for colonoscopy on 20th).Your surgeon sounds wonderful. I always believe that word of mouth from others who have had experience with a specific doctor is the best recommendation. I am so glad that you found someone who cares enough to call your doctor with you still there. That is terrific. I know it seems a long time to go until next week, especially since it is so hard for you to eat and avoid any late night attacks. But, you have been through so much so far....you know you can do this to. Can you drink Ensure? I live on it when things get really bad. I can't do it too long cuz of the sugar but for a week I can manage.I know today was your first meeting and after a long day you may not be up to thinking more about your upcoming surgery. But, one thing I did want to mention is to decide if you want an anesthesiology consult before surgery. If that would make you feel more comfortable you should ask the surgeon's office how to set it up....what anesthesiology group they use and then call and set up an appointment. Even for my procedure my GI doc set it up so I can discuss my condition with them this week and I am only having conscious sedation.I hope you don't have too bad a crash from today's energy output and stress overload. Take care. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 13, 2005 Report Share Posted January 13, 2005 Oh GEeEEEeeeeZ Em, I just read backwards through to your other appointment. What a jerk that guy was!!!! Like your gall bladder has anything to do with you having autonomic problems...uh, it's the other way around. Your autonomic problems are likely what monkeyed with your gallbladder. GRRRrrrrrrrRRRRRRrrrrrr. Let me at 'im! I'll leave little bloody mouse bites all over his ankles. Quote Link to comment Share on other sites More sharing options...
Nicole's Mom Posted January 13, 2005 Report Share Posted January 13, 2005 Emily,I want you to know that I have continued thinking good thoughts for you. I'm sorry I have not logged on in a couple of days but I have just read everything. I won't speak my mind about the horrible doctor who put you into tears but I will speak about your bravery to stand up to him and your fortitude to carry on and get to the next surgeon. You are a shining example of someone taking care of your own needs in spite of so much going against you. You have been through so much and now you have this kind surgeon and your POTS doc is in on it and it certainly seems like you are on your way. You have been through the hard part. The rest will probably seem like a breeze in comparison.I am so proud of you for the way you fight for yourself. And I believe, as I've said already, that you stand a good chance of feeling much better than you have felt in a long time once you get that naughty "gaul" bladder out of your "system". Take care and sweet dreams.Beverly Quote Link to comment Share on other sites More sharing options...
porque Posted January 13, 2005 Report Share Posted January 13, 2005 Good luck with the surgery. I had a ablation done with POTS or whatever it is I have, and things went fine. I was told that they were going to give me some meds in my IV to make me sleepy and I would feel it burn going into my arm...ha! As soon as I saw the orange gunk hit my arm I was out. When I woke up my head was spinning and my doc was there talking to me. I was speaking back but have no idea what I was saying...too groggy...but however, the effects of my meds wore off very fast and I was soon more awake than I wanted to be. Things will be fine. Rest and recooperate,...as much as a person with POTS can anyway. Once again good luck! Quote Link to comment Share on other sites More sharing options...
geneva Posted January 14, 2005 Report Share Posted January 14, 2005 Hi Emily, just thinking about you and wondering if you are having a pajama day today....you deserve a little pampering following your ordeal with the doctor yesterday so hope you found some good movies for you and Asher to curl up with today. How are you feeling? Any better? Certainly, not worse I hope. take care. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 14, 2005 Report Share Posted January 14, 2005 Emily,I'm so proud of you for standing up to that first surgeon! I had a simular experience with a neurosurgeon locally in Toledo. Only I was not as sick as you at the time and it was a bit easier to take. He thought I wanted to have neck surgery for attention. What the heck------------NOT.And Nina, when you talked about the mouse bites on the ankles you made me think of the time we dressed my dog in a halloween costume---a Cow to be exact---with little horns. My Son is the only person she liked to mess with for some reason----and he's 6 ft. two----big guy. Anyway she went after him with that costume on---with those little horns charging after my sons ANKLES----anyway I laughed so hard I peed my pants. I will have to send a picture. Yes---i'm sorry, I couldn't resist the costume, I had to do it. But I don't put bows in her hair atleast.Emily you are quite the trooper and you will sail through this surgery with flying colors. And what a relief it will be-----AAAHHHH.Like Nina said, the bad gall bladder is more likely caused by the ANS dysfunction. Many who have dysautonomia end up losing their gall bladder----NOT THAT THEY ARE MISSED---LOL Now how would that Doc ever think you thought gall bladder surgery would cure your POTS? Sure is full of himself. You hang in there----i'll be thinking positive thoughts of healing for you. Julie :0) Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 14, 2005 Author Report Share Posted January 14, 2005 hello all...thank you so much for checking in on me...i wasn't going to post b/c i feel like i've hogged enough attention...but...since you asked i did want to log on quick and update you...you have gone above and beyond for me...you are amazing.geneva...i have pre-op tomorrow at 3:30. i don't get to choose the anaesthesiologist, but i do meet with him/her tomorrow and go over everything...i am very relieved about that. hey, we will be bonding across the miles while you are in for your colonoscopy! you can do it!i woke up this morning and thought, hmmm...i can do this, i can make it till wednesday, my gall bladder is a little calmer this morning...blah de blah.but, then, i tried to eat...um, bad idea. in one end, out the other. so pleasant.i just hate that now i cannot digest anything. the discomfort, the nausea...i'm so weak it is just hard to think of waiting until next week.i'm not even worried about the surgery anymore...i'm worried about my gallbladder holding out until then.i took levsin and zofran this afternoon, but now, i just feel even worse b/c they seem to have aggravated my POTS symptoms...you know that nice goofy, fluttering heartbeat you get.so, unfortunatey i actually feel worse today! good grief. sorry to whine and complain! i've done enough of it lately.geneva...no good movies today...i was too woozy to look at the tv! i even tried watching spongebob but couldn't look at the tv...ugh! and the computer...just for teeny bits.i am ONE with my recliner! okay, well, that's it for now. sorry no 'good' news. thanks for all of your support about that first sugeon i saw! julie...i don't understand how they think we just want 'attention' like surgery is fun! i know that is what he thought about me. oh well. it doesn't really matter in the end b/c i got the appt. and surgery with the person i wanted anyway...goodnight...i'm checking in and trying to stay updated on posts, just not typing much...but you are all in my thoughts!emily/green girl with a flair (t, you reading?) Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 14, 2005 Report Share Posted January 14, 2005 Hi Emily,Thanks for keeping us posted. I hope that the Day will come by fast. I am sure that the fact that you have POTS makes the waiting worst for you. You will make it.Julia,How can a doctor be so stupid as to believe that you want neck surgery for attention! Maybe they should put themselves through neck surgery just for the fun of it and see how much attention they get.Ernie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 14, 2005 Report Share Posted January 14, 2005 Dear Greenie Girl, Your first doctor is still mad at me for leaving all those bloody puncture holes on his ankles. He's going to have to pay lots of money to his drycleaner to have his pants cuff's cleaned I have some MIGHTY sharp teeth. For those who think I'm serious... maybe I am?? Don't eat any milk products in the week after your surgery; I craved it and made the mistake of eating a bowl of cereal with whole milk (against Teri's protests and head shaking and "you'll be sorry! stuff). Yeah. 10 to 15 minutes later, I puked everything--not pleasant to do 24 hours post abdominal surgery. Probably goes down in history as one of my stupidest moves EVER. Learn from me green grasshopper. NO MILK PRODUCTS.Post surgery, I lived on ginger ale with the bubbles stirred down, and watermellon. Not sure why, but I craved watermellon durning most of my recovery. You will do great with your surgery...and you're going to feel so much better. And, if you ever want to bond on the recliner issue, you can always go to my website and see my surgery page for my drugged up after my fusion. I have that drug induced look about me We're all here pulling for you! Nina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 14, 2005 Author Report Share Posted January 14, 2005 now nina...i have to tease you b/c you usually have your head screwed on pretty well...that was NOT a sensible thing you did with that milk and cereal! i hope you are laughing b/c i am...thanks for the funnies...i needed those smiles... i think just being able to eat SOMETHING will be a good thing!ernie...thanks...that was funny...you are right...never, ever judge someone else unless you have walked in their shoes. only we walk in our shoes. surgery for attention? that gets a big GOOD GRIEF from me.emily Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 14, 2005 Report Share Posted January 14, 2005 Hello GG! Is tomorrow pre-op lab work? Put down that turkey leg and ice cream!!!! Nothing to eat or drink after midnight!I'm kinda tuckered out so just a quick hang in there!Keep being gentle with your yucky guts!good night! tearose Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 14, 2005 Report Share Posted January 14, 2005 Ernie,Ha---I would love to see that surgeon go through what i'm going through now----the possiblity of having ANOTHER surgery for attention.Lets see if he wants his head fused to his neck, and throw a couple of rods in there for good measure----and never able to look at the stars again---unless he lays on his back. Wow----I should gets loads of attention with that. Let's pray it doesn't come to that.Trust me----like I said before----I would rather get looped on margarita's and dance on the tables for attention----It's a lot more fun----but unfortunately I can't handle more then a couple sip's of my husband's margarita now. And he never used to drink them---he adapted the taste and gets them just so I can have a sip for old times sake.Julie Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 15, 2005 Author Report Share Posted January 15, 2005 just a little update...I AM SOOO GONNA BE READY FOR THAT TRIP TO THE DINET SPA! who's coming with me? you ALL win the prize! went for pre-op today, and i did NOT get to meet the anaesthesiologist. i was really disappointed by that...so many things to keep track of the morning of. but, mom and i will make a list together and b/w the two of us, hopefully we'll remember everything.i spent the whole time lying on the floor in the hallway, as they had no where for me to lie down. pleasant huh?i can't say i found the process too reassuring. aaarrrrggghhh...i hadn't kept any food in me and think i got dehydrated. this afternoon i didn't know how i was going to make it to wednesday...i almost passed out getting the blood work done, and on and on. but, i got down a ton of chicken broth, some rice cereal and some applesauce...and feel a tad stronger now. and, my neck is better now that i can position it correctly in my chair.i just feel like each day i get weaker...the longer the recovery! trying to hang on to the light at the end of the tunnel but it is hard...i hear tearose and steph and earthmother and merrill and geneva and all the rest of you telling me to BREATHE! so, i'm working on that! why is waiting so hard? and why do they make you wait so long for surgery? i mean, i just feel my body getting more and more toxic. okay, enough whining...i miss having the energy to keep up with everyone's posts!still your greenie, emily Quote Link to comment Share on other sites More sharing options...
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