Jump to content
Sclero Forums
Sign in to follow this  
Elvis

Mouth problem and Scleroderma

Recommended Posts

Hello Caz

 

Oh I am sorry that the problem has come back albeit in the other gland. Please let us know what happens and did you have the surgery on the other one?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi,I have had one saliva gland out.Going back in mid April to see what they are thinking of doing with the other one.

 

Will keep you posted.

Share this post


Link to post
Share on other sites

Well,have just seen the consultant about my saliva gland. He is gonna send me to have an ultrasound and silogram but he feels that I will almost def have to have my left saliva gland removed (right one removed in Dec 2010)

Will let you know results etc when I get them.

 

take care.xx

Share this post


Link to post
Share on other sites

Hi Caz,

 

I'm sorry to hear that you've probably got to have the other salivery gland removed. However, hopefully that will sort the problem and you shouldn't get any more trouble with them.

 

Do let us know your results when you get them. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi,just an update on my saliva gland. I do need the other submandular saliva gland removed.This will be sometime in August hopefully.I am having more problems with this one as it regularly gets infected and causes me alot of pain so I'll be glad to get rid of this one! take care

Share this post


Link to post
Share on other sites

Hello Caz

 

I'm sorry that this problem has come back albeit in the other gland. At least you know you'll soon get permanent relief!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi ,just an update on this post.

 

I had my right submandibular gland taken out in December 2010 and I had my left one out in July 2011. When they did a biopsy on the last gland they said that I had secondary Sjogren's (I still can't say Sjogren's properly!)

 

The Maxillo Facial department wants to keep an eye on me as all my saliva glands were inflamed at my last appointment.

Share this post


Link to post
Share on other sites

I'm sorry you have had to have both of your submandibular glands removed. Here are some warm hugs for you:

:emoticons-group-hug:

It is pronounced "show grins". Like it is something to smile about? :emoticon-dont-know:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi Caz,

 

Sorry to hear that you did have to have the other submandibular gland removed but hopefully now the problem will be resolved.

 

Never mind if you can't pronounce "Sjogrens"; I couldn't pronounce "Scleroderma" when I was first diagnosed and as for spelling it.......!! ;) :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Elvis

 

I hope getting rid of the glands lessens your problems! When I was first diagnosed with scleroderma systemic sclerosis I had to write it down for my husband so he could remember what it was when people aksed what I had been diagnosed with! You get introduced to so many weird 'n' wacky words to pronounce it's almost like learning a new language!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Just an update on my mouth problems. Having problems with repeated infection in my Parotid saliva glands,throat infections and oral thrush. I have an ultrasound tomorrow on my neck so I'm hoping it can tell me what is going on. I feel that secondary Sjogrens symptoms have increased-now I have to use artificial tears several times a day and my skin has got much much drier.

Share this post


Link to post
Share on other sites

Hello Elvis

 

I'm sorry your symptoms are worsening and hope the ultrasound comes up with some useful information. I know a few people with Sjogren's Syndrome and it's no fun to live with what with artificial tears and saliva, you have my sympathy for sure.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Elvis,

 

I am sorry to hear that your mouth problems seem to have worsened. Thankfully, I don't suffer with Sjogren's but like Amanda, I do know of a few people who unfortunately do and it sounds really horrible and unpleasant.

 

I do hope that having the ultrasound will enable your consultant to suggest something to help with your symptoms and make things a little more comfortable for you.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Elvis

 

I read with interest about your mouth ulcer; you may have posted this a long time ago but I haven't been logging in for a while. Happened to me to, had a biopsy done, and found to have lichen planus in the mouth, which is common in immune deficient diseases such as Scleroderma, ask to have it checked out as there is a lot that can help. I attend Prof. Porter's clinic at Eastman Dental Hospital, a lovely man who has a special interest in Scleroderma. I don't know where you live but you can ask for a referral from your dentist?

 

Food for thought!

 

Hannie

Share this post


Link to post
Share on other sites

Hello Hannie

 

Thank you so much for this post because prior to it we didn't know that there was a scleroderma expert at the Eastman Dental Clinic, let alone his name and demeanour. This is so helpful!

 

May I ask how you ended up at this dental hospital, including who referred you?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×