SJS, AI and surgery question

[gsmraxe]

Hi all,

I go in for surgery on 6-24 for a total thyroidectomy and was wondering if anyone reading has had their SJS get worse after surgery (long  term or short) or if they "acquired" another AI disease after?  I read somewhere on the net that surgery can cause AI diseases to crop up as it's stressful on the body to be cut open. 

Also, since I have to be on thyroid hormone replacement therapy, has anyone here taken either replacement, or for hypo and had it disrupt their SJS or cause other AI issues?

[Scottietottie]

Hi 

The worst bit about operations for those with SjS is the preparation before hand when one is not meant to drink. I eventually negotiated being able to sloosh water around my mouth and then spit it out because the dryness was just getting too much!! Mention it to medical staff beforehand.

After the op you will need plenty rest as it tend to take us longer to recuperate. You MUST pace yourself.  I had a big knee operation but didn't develop anything else as a result of it.

i don't think of thyroid replacement as being a medication. I choose to think of it as something I should be manufacturing myself - but I'm not - so it makes sense to take it.  Getting the right balance can take a while and its important to have regular blood tests to make sure the levels are right. When my thyroid levels are right - I feel good. When I'm not getting enough hormone I feel like death!  The thyroid can make a BIG difference.

best of luck on the 24th. I wish you a speedy recovery. Please keep us posted.

Take care - Scottie 

[Victoria05202000]

With all my minor surgeries I have had...I always took a little longer than most to heal. I also was put back in the hospital with a bad flare after each c-section I had too. But it was not too bad.


Take Care!
Vicky

[ohiolady]

I had my left kidney removed in 1-09 due to kidney cancer.  I did exceptionally well, healed quickly and just had a small flare with my dryness.

Some tips:  Ask to be put on surgery schedule first slot in the morning.  Talk to anesthesia about protecting your eyes.  I took my Evoxac to the hospital with doctor's permission and took a dose as soon as I woke.  Brought my eye drops and husband had ready when I came out of surgery.  I was in a panic about my dryness but did very well.

Wishing you a speedy recovery. 


Anna

[Leisa]

I wish you the very best and i pray your surgery goes smooth. I have no advice on either the surgery other than when i had my hysterectomy a few years back i had a long road to recovery. So take it easy and don't expect to jump up and be doing things. Listen to your body and DON'T push yourself! Let your body tell you when it's ready to resume normal activity. You'll be in my thoughts and prayers and let us know how your doing.

[Epson]

I have had 4 surgeries in the last 10 month and chemo, can't say that Sjogren's made me anymore miserable or slowed healing.

[Ohiocat]

I have had a few surgeries since my Sjogrens was discovered.

For dealing with the dry mouth prior to the surgery, I was permitted to use the dry mouth sprays on the day of my surgery.  They just moisten your mouth and since you don't swallow anything, they did not count as taking something per mouth.    Both times  (one for thyroid removal and other for cleaning out an infection), I check with my doctors in advance.  But they had no issue with the product.  I prefer the Orajel spray, but Biotene also makes a version.  Don't think I could have made it to the surgery without it.

Also I made sure the doctor that puts you to sleep (sorry the name escapes me) knew about my dry eyes.  They took extra precautions as a result to ensure that they used plenty of the stuff that they place in your eyes to keep them moist. 

As far as the surgery causing more problems with your healing, I really don't know.  Sjogrens seems to be very different for different people.  But I do know that stressing over it will not help.  You will heal as you do, and don't let anyone else judge for you what it takes for you to heal.  The body seems to be very adaptable and that is what you need to count on.

[gsmraxe]

I know that stress doesn't help anything...But I am very stressed right now.  On top of having cancer and the looming  threat of  surgery and possibly multiple surgeries, my Mom needs hip replacement surgery, she can't walk too well.  So, I'm taking care of her, along  with our 2 German Shepherds and 2 cats.  Tack on taking care of 2 houses, and 3 cars and working 40 hours a week.  I am finally sleeping, but my face is still breaking out and my joints ache more than normal.  I've been gaining "stress weight" which drives me nuts. 

When it rains it pours...This too shall pass...I've run out of anicdotes    I'll be fine, I might be worse for wear by the time everything calms down, but for now, nothing  will help me "unstress" until it's all over.   

[Katybarstool]

GM

My heart goes out to you. This too may pass, but you have to live through it, and that's no fun. I hope you get some relief soon.

In terms of surgery, I had recent prolapse surgery, and was allowed to use my Biotene Gel right up to going to theatre. In terms of recovery, I have had one major and five minor in the last four years, and seemed to take longer than predicted to recover. My colo-rectal surgeon said I 'could' be back at work within one week of the prolapse surgery. Three weeks on, and I'm still not ready. Having said that, I'm a lot older than you - 52, and am possibly also having a flare of the SJS, so I'm not beating myself up.

Look after yourself, and know that we are all batting for you.

Kathyx

[susanr]

Hi - Best wishes for the surgery. I had a thyroidectomy for thyroid cancer 5 years ago, the surgery was not bad at all, recovered pretty quick. I was diagnosed last fall with Sjogrens but it had been suspected for a while. The radioactive iodine treatment was tough on the salivary glands. The thyroid replacement med does not seem to affect the Sjogrens, it is getting hard to tell with all the meds I am on now what is causing what! They found I also had Hashimotos when they examined the thyroid after removeable, which I never knew. I know with these AI diseases it seems common to have more than 1.
If you tend to get nauseous from anesthesia or pain killers, I would recommend asking the anesthesiologist for Zofran in your IV to treat the nausea (they usually don't give that because I think it costs more, unless you ask). It works well/ I see alot of other great ideas too.
Take care,
Susan

[TerriJ]

I had my thyroid removed at age 7.  I'm 49 now.  I've been taking Synthroid for many years.  Over the last year we've had some difficulty in getting my dose right.  Having a balanced level of thyroid hormone in our bodies is really important, so if they are removing your thyroid gland it's a must to take the medication..  The worst thing I recall about the surgery (and that was a long time ago, lol) was my neck feeling kind of weak and sore.  Maybe they have improved the surgical technique in the last 42 years who knows.

I also had major surgery last August, not long after I was diagnosed with SS and fibro.  I was pretty worried about it since I was having a lot of fatigue, etc.  The doctors thought it would be ok though, so I went ahead with it.  My recovery went well with the exception of some serious GI issues and a severe, widespread rash both from antibiotics.   You may look into taking probiotics after surgery since they usually give a big dose of antibiotics during surgery and your GI tract gets way out of balance by killing the good bacteria.  Healing and all that was not a problem though.  I have dry eyes, but not a dry mouth, so I didn't suffer from that.

I hope everthing goes well for you and that recovery will be speedy!  Sending good thoughts your way.

Terri

[gsmraxe]

I had my thyroid removed at age 7.  I'm 49 now.  I've been taking Synthroid for many years.  Over the last year we've had some difficulty in getting my dose right.  Having a balanced level of thyroid hormone in our bodies is really important, so if they are removing your thyroid gland it's a must to take the medication..  The worst thing I recall about the surgery (and that was a long time ago, lol) was my neck feeling kind of weak and sore.  Maybe they have improved the surgical technique in the last 42 years who knows.

Terri,

Did you have Medullary Thyroid cancer?  Maybe Men2A positive?

[TerriJ]

Nope it wasn't cancer.  Possibly Hashimoto's.  Both of my grandmothers, my mother and sister have/had thyroid problems.  I grew up in a small town and I think the doctors did what they thought was best at the time.  The otolaryngologist I am seeing at a local teaching hospital said that in this day and age they would not remove the thyroid of a 7 year old child unless it was cancer. 

Terri

[gsmraxe]

Nope it wasn't cancer.  Possibly Hashimoto's.  Both of my grandmothers, my mother and sister have/had thyroid problems.  I grew up in a small town and I think the doctors did what they thought was best at the time.  The otolaryngologist I am seeing at a local teaching hospital said that in this day and age they would not remove the thyroid of a 7 year old child unless it was cancer. 

Terri

Glad to hear it wasn't cancer.  When I went to the ENT in March, he told me it was probably a nodule and they wouldn't remove it.  I asked about the fact that it's really annoying and getting bigger...He said unless it interferes with my eating and/or breathing they didn't want to touch it.  I asked you because with Medullary Thyroid cancer, if a person is Men2A positive, they will take out the thyroid of the children, even as babies, because it's a 50% chance of the kids getting cancer too.  Doctors used to do more surgeries in the past then they do now, like you said, they thought it was best at that time.

:-)

[TerriJ]

You should have seen the look on the otolaryngologist's face when he found out how old I was when I had this surgery.  He said it never should have been done.  Actually, when they did the surgery they cut one of my vocal chords.  We didn't know it at the time, so I have compensated all these years with one vocal chord.  They discovered this when I was being scoped by the oto doctor about a month ago.  He is amazed I can speak as well as I can.   

Terri