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TOPIC: Looks like I going to have to have surgery (SCARED

Looks like I going to have to have surgery (SCARED 6 years 10 months ago #1

  • jube
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I am PETRIFIED right now. I have been avoiding any type of surgery for years even though my doctors have been pushing and pushing me. However, I don't know a workaround for this one. I have a large cyst at the base of tongue (epiglottis) that is closing off my throat. It continues to get bigger and it is getting to be more problematic as it is making it very difficult to swallow. The doctor tells me it will eventually close off my throat. It is not an option to do something in his office as it is too low in throat, so he says I will have to be put under. I have recently been subjected to many chemicals and am going through a worsened toxic load period already, so the timing is certainly not ideal).

I did see the discussion posted 7 months ago (sorry if I should have posted it with that ongoing flow), and I wrote down the protocols suggested, but do not have access to an actual "Environmental Illness" doctor in my area so actual testing is not an option. I tried to go to Environmental Health Center in Dallas years ago, but my severe pain issues caused us to have to leave within 3 days as furniture "safe" for EI is also hard as concrete. And the available room was up a flight of stairs and as I got worse and worse, I couldn't do it. ( I ended up in a wheelchair and had to leave.)

Does anyone have any suggestions how best to approach regular doctors and a surgery center about this stuff in the best way in order to get them to understand (and believe in or at least consider the validity of this condition). I haven't had much luck and just feel defeated and afriad to even try again. It will be outpatient, so I will be able to go home after surgery, but am so afraid of getting as bad as I was at the peak of this when I couldn't tolerate anything at all! I have been going through months of worsened reactions already and am just frozen in fear right now. (Also if I wait until it completely closes off it might be early next year and my health insurance gets even worse and I will end up owing thousands of dollars where now I have already reached my deductibles and my insurance is better than it will be then.)

If anyone has any suggestions or ideas, I would greatly appreciate it!!
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Re: Looks like I going to have to have surgery (SCARED 6 years 10 months ago #2

  • Jodie
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I don't know if this is any help but earlier this year I was in a similar situation, needed a GA but was terrified it would send me back to square 1, when I was so ill I couldn't even leave the house. The surgery I needed was 1 hour long, so I went about pulling all sorts of strings to get a different op done first - a 15min surgery where a GA wasn't strictly necessary (usually local anaesthetic was used ), for an op that was useful but not absolutely necessary. I wanted a short dose of GA first, before the 1 hour surgery, just to see how well I tolerated it.

They wheeled in the best anaesthesist in London since I was a difficult case, & I was absolutely fine, I actually came out feeling better than I did when I went in! Possibly the key was a dose of steroids 2 hours before the op. Here's what he used:

Prednisolone 30 mg 2 hours Pre op
Propofol
Fentanyl
Ondansetron
Sevoflurane

2 months on from that I need another unexpected op - this also should have been done with a local anaesthetic but since I've reacted badly to lignocaine in the past the surgeon would only do it in under a GA. However they tested lignocaine while I was "under" (this time for 50mins!) and I didn't react badly to it. Again, it might have been the steroids 2 hours before the op which stopped a reaction.

Maybe get the anaesthesist to give you a call and talk about your issues - I did that in both cases, they are usually very confident they can deal with it.... it's the surgeons who are nervous, and it can be a little tricky dealing with them, they can sometimes run scared and back off, but in your case the op *has* to be done, you have no option and neither do they.

So that's my experience, I normally have a terrible time with meds & chems, but I have far worse reactions to washing detergent and even trying on new clothes than I did to those two GAs.

Good luck! :)
Last Edit: 6 years 10 months ago by Jodie.
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Re: Looks like I going to have to have surgery (SCARED 6 years 10 months ago #3

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BTW, I would get them to keep you in as long as needed to make sure you're not going to have an adverse reaction, especially since the op is near your throat. I had to to stay in overnight for that first 15min op as they wanted to keep an eye on me..

Jodie
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Re: Looks like I going to have to have surgery (SCARED 6 years 10 months ago #4

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Wow -- I hadn't even thought of that (staying there longer). The only doctor I have that actually believes in this and tried to be understanding is my Naturopath, so I was thinking staying as far away from the hospital as possible as quickly as possibe was the best idea. Eye opening for sure. Most hospitals and doctors offices are a major problem for me still, so I assumed it would for sure make things worse long term.

I appreciate the protocol info, but do have one question. I had intravenous prednisone given to me years ago and I had a horrific reaction to it. Is this Prednesolone almost the same as Prednisone by any chance? Do you think another steroid might be better? I mean it caused me problems for YEARS. You sound like you are like me and react to SOOO many drugs, chemicals and foods!!

When a person is dealing wth this condition, it just makes you scared to death of almost anything!!

It sure calms me to hear that you did okay with the procedure. I really needed to hear that someone had done okay!! I just recently had yet another long talk with my pain management doctor trying to get her to understand what is happening to me and why I have refused so many treatments and surgeries she wants me to have. And I have been seeing her since 2004. I assumed it would be even more difficult with anaestesiologist who hasn't seen me and known me. I think I might have finally gotten her to understand it a bit better, but only time will tell. I was told that I could talk with them prior to having it done, but it makes it difficult since even I don't know what to tell them to do if I have a bad reaction. It sounds like they were helpful for you, so maybe it will go better than I thought. I have just been told that it was in my head so many times that I just don't know what to do anymore.

thanks again so much!
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Re: Looks like I going to have to have surgery (SCARED 6 years 10 months ago #5

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I know, it makes you terrified of any new situation where you might cross paths with chems or meds, let alone something where multi number of meds are used at once.
There was someone else on this board who had a GA about 18 mo's ago for a hip replacement and was fine apart from some itching which he thought was more likely perfumed nurses or something, you might be able to find his messages if you do a search. Shame you're not over here, I could send my lovely anaesthesist your way!

Prednesolone & Prednisone are probably related, have a google. I had to take 6 little pills - I wasn't expecting this at all. I said ' I'll probably react to them' . The nurse laughed - that doesn't happen in their book. To my surprise nothing did happen, but later I looked them up - yes you can have bad reactions to those particular ones, tho of course it's rare. How long is your op, do you know? What worried me as much as anything with a 1 hour op (it was to repair ankle ligaments) was that they'd have to stop half way thru cos of my heart rate taking off or something and I'd be left with an even more damaged ankle..what will happen if they have to stop half way thru yours? If its just a 15 min job hopefully that won't happen.

I took my own sheets into hospital which raised a few eyebrows, but I didn't want anything upsetting my system and detergent is really bad for me.

I had a list I'd typed up and printed out to take with me with the worse offenders as far as meds and chems are concerned PLUS a list of all the symptoms I have if I cross paths with something I shouldn't. When I got asked for the umpeenth time what I react to and what happens I just show them the list & say "that's what happens!" I get tired of repeating it, and anyway there's always something I forget if I try and do it off the top of my head. Plus no one can say they weren't warned as you have the list and you've shown it to them. Both my arms were festooned with coloured plastic hospital bracelets with lists of chems and meds just before I went down to surgery, I had to see the funny side at that point, a punk rocker would have been proud LOL

With my reactions they either occur within about 20 mins or 4 hours, if I get past that I can still have itching, brain fog, exhaustion, but nothing that feels life threatening. I could have been in for a day case but they need you in really early for that and I had to get to London, I'm about 2 hours away so that would have been difficult. Plus we were timing it to coincide with the anaesthesist that my surgeon wanted, so ended up in overnight. My surgeon was happier with that anyway - he was excellent I have to say, he organised the whole thing and was prepared to break the rules & go ahead and do a 15 min GA tester when a GA wasn't really necessary. The ankle surgeon had backed off completely at that point.

>>but it makes it difficult since even I don't know what to tell them to do if I have a bad reaction. >>

Is there anything that usually helps with bad reactions? that might give them a clue? There's one antihistamine that really helps me with itching (all the others make me ill).. that was all I could tell my guys but it was better than nothing..

Let us know how how you get on... Jodie ;)
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Re: Looks like I going to have to have surgery (SCARED 6 years 10 months ago #6

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ooo it just occurred to me - lots of people on health.dir.groups.yahoo.com/group/GreenCanary/ have had GA's with no problem - they mention it in passing cos they're more worried about follow on problems, ie no lifting (how do you cope with heavy air cleaners etc), no carrying shopping. One girl has had 2 surgeries in one year and another coming up. Have a nose around there ;)
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