I am now at home having spent 4 days in hospital having one of my parotid salivary glands removed. I know it is early days yet, but I am struggling with recovery and was surprised at how big this operation actually was. I clearly didn’t do enough research! Has anyone else had this surgery and can you let me know how your recovery was?
They have taken really good care of me and I am very happy with treatment. The pain actually isn’t so bad, but I have a lot of stitches and so am uncomfortable. I feel like I have been hit by a bus but, I suppose that could be the Sjogren’s complaining to me about the surgery! Interesting to hear of your experience though. Did you have the whole gland removed? There was no way I could have gone home on the same or even the next day!!
I am still new to pSS...but if you have salivary glands removed, what do you do for saliva?!?
And there it is, for all of your expertise, you can count on your recommendations of a fine single malt scotch as a remedy! I'm about ready for one myself!
I would not have expected you to have used a Divinci! That is a surprise!
I hope that your recover quickly and completely and are all teh better for having this surgery done!
Wishing you well,
Hope you feel better soon. It sounds painful and I think you are right that the sjogrens is playing up on top of your op. You’re very brave. Look after yourself.
Casey, both of my larger (parotid) salivary glands had multiple calcium stones, which caused me an enormous amount of pain. In the one I had removed there were more than 12 stones!!! The other side only has about 3, so we are leaving that one for now. Because of the pressure caused by the stones, the gland had atrophied and wasn’t working properly anyway. We have 4 glands in total, but with 2 not working properly as a direct result of SS, I have had to become creative in coaxing my remaining glands into making more saliva by drinking lemon water, sucking on sugar free lemon sweets etc. This surgery was the only way to avoid future attacks of pain from blockages caused by the stones and I am hoping that once I have recovered I will really feel the benefit of it. It was actually the discovery of these stones which led to my diagnosis.
Thank you, Baleares, for explaining. Do you know how stones form? I didn’t know that was possible. I am sending good thoughts your way to feel better ASAP!!
So So sorry to hear this, I hope you get better soon
I hope you recover soon and that your SS calms down quickly. I've had a few surgeries in my life none of them related to SS that I'm aware of, except maybe the kidney stone removal. Recovery isn't fun. One of my tricks is to sleep the time away if at all possible.
Like Casey I'm shocked about your whole situation here. Are the Dr.s not able to remove the stones but leave the gland in place? It seems like that would be a better avenue and that you might have a chance of the gland reviving some and decreasing dry mouth.
I'm sure there are reasons the surgery to remove it makes the best sense and I am not a Dr. I'm just trying to understand. I'm so sorry they had to remove the whole gland. I know how precious suliva is. I didn't used to back before the SS but now I do.
Hopefully, you will feel better in the long run than you did before. Maybe the other side won't get any more. Sending you happy thoughts and energy.
The problem was that I had so many stones. The surgeon hadn´t seen anything like it before and it was his questioning and extra research, which led to my being referred to a rheumy and then being diagnosed with SS. I have been suffering with jaw pain for about 12 years and only got it looked at properly in the past year. The gland had atrophied and the only way to stop the recurring pain was to get it out. It´s not ideal I know, but I couldn´t cope with the pain attacks any more.
I hope that you are well very soon and that the other gland can stay intact!
We just never know what we're in for! Seems there is always another surprise around the corner, but bringing it here always helps!
Take good care!
Wishing you well,