Back from surgery

[stacyY]

Ohhh you all will not belive this!!!!!!!!!!!!!!!!!!
TOdays surgery was not so great. THey had me there 2 1/2 hrs early. When they told me not to eat after 8pm the night before, and i didnt have to even be there till 12:45pm. Then we get there, and I didnt even get into the surgery room till about 3:40pm.
THey had a horrible time even getting the IV in, 3 pokes, 2 differant nurses. Then Finnaly they get me to the waiting room for surgery.THey gave me this very nasty stuff to drink, for acid reflux. It was very acitic. I took it and i tell them it was hurting my stomach. WEll then they get me into the surgery room, and I dont even remember it. was waking up, and i felt funny, and i was choking. I was told I threw up during surgery! I never done anything like that before! My throat is raw from all the acid, and the tube they had in scarped the back of my throat i litterly have cuts on the back of my throat, looks like bleeding. Hurts really bad.
NOw the Good/bad news, I dont know what to make on it. This doctor tells me, you dont have IC. that my bladder was perfectly normal. I Personaly think my doctor was on more drungs then i as during the surgery,lol...i cant prove it i never even saw her at all...she talked with my mom. said i have to make an apointment to see her.
Its just been 1 years 2 months since my last cyst.hydro... How can one doctor see it and another doctor not? I dont undertstand. I know the 1st doc said it was only 5-10% effected. Could this year on the Elmiron heal up the cuts?
I am just so lost for words. I have no idea what to think. On thursday I am to go to a psychological exam for the Disability evaluation. The whole basis for it was that i have IC. now they say I do not. I dont know what to even think or do or even to say about this mental exam.
IF i was pain free, and they say ok you dont have ic, I would be so happy. But i have constant pain. It never goes away. Before she thought it was pelvic floor dysfunction. before is march 20th, when she said that to me.
I really am just at a lost here. Its a horrible year, pain wise. I been threw a lot of doctors, and a lot of crap. I thought well at least I had a name to what is going no. Now they take that away from me today. I have no idea what to do now. Im sure with in the next week or so i will go see her. BUt im sure it will be pointless. Even my ob/gyn, wanted to send me to her. So then I have no options left.
Any Ideas???Expecialy when when i go to the psychological exam. I have no idea what to be saying when i go there. and after today am at a lost.....
thanks for any advice.
wish everyone is well and taken care of them selves
thank
stacy

[stacyY]

HI;
I dont know anything about a potassium sensitivity. Im not sure if that was ever done. I did have the letter from the 1st doctor saying i have IC, its what i have been dealing with.
The first cysto/hydro i had done, my bladder was smaller then normal, and had to be streached, to was only 700cc, something like this and was able to get it to 900cc.
But the doc told my mom it was normal size now. Which i dont belive cos i am, getting up to pee at night lattly. But also I am having a hard time to empty out my bladder. every since i see this doctors. they have to do a cathider. And I go, but then they did the instilations for like 4 weeks. they acculy where making the pain worse, but when they did the instilations, i thought i was empty out, but they would get about 200-300cc out threw the cathider.
My mom is instisting i get my pituitary checked. Her friend has had so many issues like i do, gets every medical problem there is, and not geting better. Then she had hers checked and it wasnt working properly. She has to give her self a shot every day. but I guess she is so much better. I am not sure if thats something i need to check out or not.
Ohh yeah No i wasnt to hungery acculy. I didnt end up wating till about 8pm. And my mom pretty much forced me to eat. If i had been alone, i wouldnt have eaten i think. I guess after a certain point,you just forget about it, of course, my throat is raw, so eating is not to fun right now.
Thanks for the info though i should ask my doctor about it the potassium.
take care
stacy

[Berkshire Road]

For Social Security Disability, according to their own ruling on IC, diagnosis by cysto/hydro or even PST is not necessary; a clinical diagnosis is acceptable (by a clinical diagnosis, they mean one based entirely on symptoms; for example I was diagnosed based only on my PUF test. That's one thing I know.

I agree with Briza that it would be a good idea if you could look at both surgery reports side by side. Your bladder may not have been distended to the same size each time. Your medical records belong to you; all you have to do is ask the dr. who performed the test or else the hospital where it was done, and they'll give you copies (they can charge a copying fee, but that's it).

Having said that, I have to admit that I really don't understand this. If you're still symptomatic for IC, it seems odd for her to tell you you don't have it. Maybe some of the others who go in for cysto/hydros often will be able to shed light on the variation in results.

Meanwhile, I will be thinking of you, and hoping things work out.

[ICNDonna]

I'm sitting here wondering why you were told to not eat or drink after 8 pm the day before surgery, which is unusual to say the least. Usually the instruction is nothing after midnight if surgery is fairly early. If surgery is late in the day, clear liquids are usually allowed until 8 or 10 hours before surgery.

I think it would be a good idea to get your medical records from both procedures, then you can compare the two. There are some people with IC who have been told after a hydro that they didn't have it --- I know of several people who were then diagnosed by a potassium sensitivity test.

Warm hugs,
Donna

[tigger_gal]

I am so soryy that you had a rough way to go.. sending you big hugs.

[humpieumpumkin]

I am so sorry you are suffering so badly. Hopefully some good rest and support from us will help you pull through this.

Erika

[bamafan]

I am sorry that you had a bad experience with surgery. When I had my surgery I had several things done and could not eat anything but jello and chicken broth all day and nothing after midnight. I was told by my first gyno that I had prolapsed uterus and I went to someone who specialized in this and that is not what was even wrong but the specialized doctor knew what was wrong it was IC. But maybe you will get straighened out soon. Bamafan

[Sarojini]

Ugh, how terrible!! Make sure to monitor your breathing over the next few days. Vomiting during surgery can be very dangerous; since you are on your back and unconscious, you can aspirate the vomit into your lungs, and this can cause pneumonia. It's unlikely because the anesthesiologist probably suctioned you out fast (which probably made your throat even worse, but may have saved your life), but just make sure you're not wheezing or short of breath

[vm]

I have seen some people post here that their bladders looked different after some time on Elmiron....