Surgery and SjS

[mcdreamyfan]

I had to have emergency surgery on Monday.. I was having female bleeding trouble that would not stop.  My problem now is my throat.  I guess from where they put the tube down my throat while I was knocked out.  I told them, before surgery, that I had Sjogren's and that my mouth was very dry because I did not drink anything.  I kept telling them this over and over.  But I assume they rammed the tube down my dry mouth and then pulled it out without anything lubricating it.  I can't talk today, two days later, and it hurts really bad to swallow. 

so my question, can they protect the tube when they insert it to avoid this from happening?  What do you do if you need surgery and have Sjs and a very dry mouth?  Has anyone else had this problem from surgery? 

I'm very sore today, my arms are killing me too,,, I guess from where they tied my arms out to the side?   

[Sjenny]

Mcdreamyfan:

Here is a surgical prep list from another posting:
https://sjogrensworld.org/index.php?topic=6528.0

From what I understand, there is lubrication that can be applied to endotracheal tubes to protect the throat and dental guards can be used to protect the mouth , as well as humidifiers in regards to breathing apparatus.  In my hospital experience, I found I really have to be firm and detailed with hospital personel in order to be heard and it is extremely exhausting and difficult when you are ill and forced to be your own advocate.  If worse comes to worse, move heaven and earth to appeal to your doctor. and then they will be more reasonable.

I hope you feel more comfortable soon -

Sue

[Katybarstool]

Mcdreamyfan

Sending you a big healing hug. Also, thank you for telling me how you are feeling. I have surgery scheduled for next Monday - laparoscopy initially, but could turn intoo pen surgery, and I'm worried they will damage my throat or other parts if they are too rough.

Sue, thanks for your list. It's certainly food for thought.

Kathyx

[Maria3667]

Hi Mcdreamyfan,

When I had an anaesthetic at the dentist for tooth surgery, I had the same problem.

They forced some sort of clamp in my mouth to get a better view, and also hung the saliva suction tube in my mouth. I told the dentist I didn't need the latter as I have too little saliva as it is. He said the suction tube was also needed to clean up any debris from drilling away the old filling, which I might otherwise swallow. So I consented. When done, he pulled the suction tube out but a big part of dried up inner lining of my mouth came out with the tube. I only noticed this later when the anaesthetic wore off... It really hurt and took about 2 weeks to heal.  I made an angry phone call to his office.

Now when I go to the dentist I demand that he rubs vaseline on the tube (which I carry with me at all times). After my complaint he deligently follows... 

Maria
Sometimes you have to scream to be heard!

[BadSeed]

My mom had surgery a few years ago where they did a job on her throat with the breathing tube, and she doesn't have SjS.
I had surgery in 2/07 (possibly the same one as you) and had no trouble from the tube. I wasn't diagnosed back then, but my OB/Gyn, who did the surgery, knew I had something autoimmune going on & knew I had dry eyes, so they may have taken precautions.
After the surgery, I can tell you my joint pain was far worse than the surgical pain (except when I stood up -- then it got pretty close!  ).
My shoulders felt like they were being crushed. Yes, tendinitis is fun. Not.
My knees were pretty horrible -- they were waking me up every hour or so in the night for a couple of weeks -- until I got back on anti-inflammatories for afew days.

[ktfabian]

Sorry to be replying a bit late on this-

I had surgery 3 weeks ago to move my morphine pump (it's needed for a bad back injury) - I took the Sjogren's Surgical recommendations that Sue referred to to my initial consult and the doctor's assistant made them part of my permanent file that went to surgery with me.  I also brought a copy with me on surgery morning, just in case, and went over them with the anesthesiologist.  It was a good thing, I was supposed to just have sedation and a local anesthetic, but they couldn't  get me sedated enough to make it work, and I ended up with general anesthesia.  I had no problems at all - it was the first surgery I can ever remember having (and there have been more than 13 in the past 16 years) that I couldn't even tell I'd had a tube in my throat.  My eyes were kept moist and the oxygen humidified, and they removed the oxygen just as quickly as they could to avoid any drying from that.  I was really impressed by how well the surgical team treated my special needs.

Best of luck to those having surgery in the future.  Print out the recommendations and make sure you show them to every part of your surgical team.  I know I even showed the sheet to the surgical nurse who came to introduce herself before I went to the OR. 

Tracy