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Wednesday, 11 March 2015

Sjogren's Syndrome and TMJ Dysfunction: Bad Companions

This year I was finally able to see my chosen dental surgeon - one who specializes in oral and maxillofacial surgery. After 30 years of rheumatoid arthritis (RA) and hearing again and again over the years that if my jaw was sore I must be grinding my teeth, I found out the real truth - RA had severely damaged my TMJ (temporomandibular) joints. Since the damage happened over many years, the adjustments that my body made in response to the joint damage have left me with good function, even though a CT scan shows a much different picture.

It took a year to get the initial appointment and I expected to be on the surgeon's list for arthrosopic surgery for another year but, since the doctor was unexpectedly given more operating room time the process sped up and I had the procedure early in March. 

You might wonder what happens in this surgery. Basically the doctor uses a tiny camera inserted through an incision in front of the ear and just above the jaw to see the joint, and then uses small instruments inserted just above the camera to remove damaged cartilage, smooth rough surfaces, and clean the joint space - even to the extent of repositioning the disc if needed. 

You would have thought that a smart patient with Sjogren's Syndrome would have a clear idea of what is necessary for good self care when they headed to a hospital for jaw surgery. I thought I was well prepared but I was remembering other surgeries on my hands or feet - the extremities where a nerve block is the obvious way to control pain. 
I'm sure my eye was this red

Of course when the operation is on your face that strategy won't work, and the doctor is likely to want to make sure that you keep breathing regularly while he works. As a result the doctor started with a very effective decongestant which dried my whole sinus cavity very thoroughly.

I took a tiny sample of Oral Balance with me for dry mouth - it was a lifesaver, as was bargaining with the anesthetist to be able to use some Evoxac prior to the surgery. I was afraid that a breathing tube combined with a dry throat would feel dreadful.

Given the way I felt coming out of the anesthetic, I should have taken the whole medicine cabinet of over-the-counter products I normally use along with me for afterwards.


my usual eyedrops

My sinuses were so dry that I was desperate for saline spray to help the with headache and pain. Thank goodness for the Evoxac that helped my mouth and throat. Who expected the effect on my eyes to be so devastating? After I came out of the anesthetic I was unable to shut my right eye - the muscles on the right side of my face would not respond for hours after. That meant my eye was agonizingly dry, and I had no eye drops with me. 


Where was a saline spray when I needed it?

At least I had some dry mouth gel with me
So the moral of the story is - if you have Sjogren's and need to have an operation involving a general anesthetic, and the doctors express concerns for your airway - take the products you commonly use to the hospital with you so that once you are reunited with your belongings you can use them. The hospital was able to get eye drops, but not fast.

The first title I thought of for this blog post was "Don't Leave Home Without It" but it needs to be Them. I plan to restock my purse to be ready for anything. 

At the Arthritis Alliance Symposium one of the rheumatologists needed eyedrops suddenly. 
What did she do?
Asked a patient.
She had a vial in minutes.

6 comments:

  1. Holy cow! That's... erm.. extreme. Hopefully the doctors learned something about patients with Sjogren's, too.

    Did the TMJ surgery make things better?

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    1. I hope to be able to educate the doctors over the years, because this might be a long term relationship. Good thing you mentioned that - I added some Sjogren's brochures to my bag to give them for the office.
      There is some improvement in how wide I can open my mouth, and my jaw feels more stable in a way that's hard to describe. I'm not planning to try eating any apples or big hard sandwiches anytime soon though.

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  2. When I had my colonoscopy, I took along my eye ointment and asked if it was OK to use it before the procedure. The nurse checked with the doctor and he approved it, so I put it in before they started. I'm glad I used it as I had no dry eye feeling afterwards. You might want to check with your doctor before you have something similar done as the lubricant does a great job of keeping the eyes moist.

    BeckyJo in WA

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  3. The Sjogren's Foundation has a webpage of "Surgery Tips" see (http://www.sjogrens.org/home/about-sjogrens-syndrome/living-with-sjogrens/surgery-tips).

    One of the tips (under the "Medical Provider Information" section) says "A humidifier should be added to the rebreathing system." and another under the "Special nursing information" section says "After surgery, humidified oxygen should be used"

    This page has a lot of very good information and they suggest you share it with your doctors/nurses when you have surgery.

    BeckyJo in WA state

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  4. Thanks for the great advice Becky Jo. The gel would have been even better than drops.
    I can take a copy of that fact sheet to the Dr today. I'm sure he sees more people with Sjogren's. I have some brochures from the Sjogren's Society of Canada in my purse already to pass on to their office.
    The other thing I did not do was look for a blog about the procedure. It has been a helpful strategy in the past.

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  5. Wow, Annette, that sounds like quite the heavy duty procedure. I hope it will give you some relief. It will be interesting to know how your jaw feels some time after the operation area has calmed down. Take care of yourself. *hugs*

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