There certainly seems to be a wave of people having increased problems lately...particularly with cancer related involvement. Well, I guess I have to start re-reading some of these threads since I now may becoming part of that group. I went to my follow-up appt at Hopkins yesterday to see my neuro/rheumy combo in the Sjogren's Center. Within minutes he noticed my face looking different with larger parotids, especially on the left. He examined them and also found swollen lymph nodes under the jaw...which have been this way for months now.
Needless to say, he's worried about possible lymphoma, so ordering an ultrasound w/biopsy and CT scans of neck, chest, and pelvis to check other lymph nodes. I'm not going to worry just yet though, because he says it might be (he's hoping) that I have 'reactive lymphadenitis'. Anyone heard of this? Sounds better then lymphoma for sure.
I'd be interested in hearing input about this biopsy...what to expect, how long, it takes for results, whether painful, etc?
Thanks in advance.
I am sorry to hear about the change in your health. There seem to be so much that can happen to us. I guess that is because there are so many glands that can negatively affect our health.
Please take care of yourself.
Hi!
Yes, that ole Parotid.. have numerous problems with mine.
But Cricket just had two biopsies on hers! Hopefully she will sign on in a bit and I know she will respond to you...Meanwhile you can go back and look at her posts and see a lot. She is awaiting her final results in a few days, but already has her initial ones...
She has required a little more rest since she just had this last done, so it may be later today...
I will address some of mine later....Also if you want to find a ton of info, I am on a site for Parotid tumors that provides a huge wealth of info and experience. You can ask anything..The link for that is...
http://patientsforum.com/cgi-bin/bbs61x/webbbs_config.pl
There is also a PRIVATE FACEBOOK PAGE called PAROTID PEOPLE...They just have it as an accept only group to keep within the group and u can say whatever without having to worry if "a friend" is reading your medical things....
Tell tnem that ~sass~ sent you, if you decide to sign up....
I hope this goes well for you and that you slide right on thru this and recover quickly from all of it.
rest in between it all and know you are much cared for. Please keep us posted.
Hug.
my best wishes to you and big ole hugs
Anita
I had the parotid gland biopsy last week, it was not real bad.
First thy numb the entire area. Then they have the ultrasound on it and guide the needle in where they need to get samples. They took a sample and gave it to the pathologist who was in the other room, he looks at it and decides if he needs more. In my case he needed three more.
It really was not bad at all, if I had to have another I would not be so nervous.
Please tell us when you are having it so we can pray for you. When I had my bone biopsy everyone was praying for me at 1 pm and laying there I thought and felt very warm cause I knew all these prayers were being said for me, I felt the love.
I will be praying that the Lord gives you His peace and love, and I am sending a big hug!
Cricket :)
Anita,
I can't believe you have one more thing to deal with. I saw an ENT last year because my parotids were swollen while visiting my rheumy. I would have to say it got my rheumy's attention like nothing else, even more so than the gastroparesis. I wake in the morning with swollen sore parotids a good deal of the time. I put heat on them and massage them down. This has been going on for the last 5 years. I'm hoping this will be the case for you. I've been dragging my feet on seeing the ENT this year. I guess I will make the appointment now.
Keep us updated and you know I will be thinking of you.
Anna
Thanks everyone. It doesn't sound too bad after Cricket's post, so I won't worry about the procedure itself.
Has anyone heard of this "reactive lymphadenitis"? I should have asked him more about this, but he was focused on ruling out the lymphoma so the discussion centered on that.
That just means inflammation of the lymph node in response to something, perhaps an infection. As opposed to swelling of the lymph node due to an intrinsic problem with the node, like cancer.
Sharon
Being that it has been there for months and I had a course of antibiotics last month for a sinus infection, I'm guessing it is NOT from infection.
Maybe it is just in response to Sjogren's causing inflammation in the parotid and other salivary glands...without it being a cancer thing. I think this it the best thing to keep in my mind at this stage.
It doesn't have to be an infection that it is reacting to. Let's keep our fingers crossed! Sharon
Cricket,
You said the pathologist is in the other room. So does that mean you get the results right away?
Also, is it something I can drive myself to?
Thanks so much for your input.
Anita
The pathologist is in the other room, but I had to wait for results from dr., my dr, called me that evening.
My husband took me, but I could of drove as I was not given any sedation only a local. I am not sure at other hospitals if the pathologist is in theother room.
When is yours again, time also so I can be sending up prayers for you.
Cricket
He just put the order in on Wed, so they haven't called yet to set up. I have surgery already scheduled for the 1st (pacemaker replacement) so it either has to be before or at least a week or so after since I won't be able to to drive for a bit...unless hubby takes me.
I will post when I get it scheduled.
They have also scheduled CT's of neck, chest, pelvis, & abdomen to look for lymph node swelling...to be done the 26th. Did you have this also? How did yours come out?
I appreciate your help and will be thinking of you next week when you start treatment.
I first had a CT scan of neck, chest, adomen, pelvis with contrast. And a MRI of brain and orbital openings with contrast. Then the parotid gland biopsy, then the bone marrow biopsy. Tuesday I go to find out what treatment will be and when I start. He already said it would be the rituxan, but he would explain more Tuesday.
I will be praying for you that all tests come out ok, and pacemaker surgery will be ok!
Love
Cricket
Hope everything comes out ok...Sjogren's seem to cause alot of wierd inflammatory responses, especially in our gland/lymph nodes it seems.
Most of the time, it will be inflammatory..just look at our parotid glands? mine uses to swell the size of oranges..no lie!
My cousins doctors decided to dig in in lymph nodes because they thought she had cancer, turns out, some inflammatory response, which Im guessing she has autoimmune issues just like the other gals in our family. She went through alot of pain and discomfort, and took her long to heal.
Some doctors dont seem to have a clue either and freak patients out. They also seem to think they have infections, which they then
give repeated antibiotics too, which wont help and just make everything worse.
Again, hope you have good news.
Gursie
Cricket, Just a couple more questions and I won't bother you any more.
Would you mind sharing your results of the CT, MRI & bone marrow biopsy? Did they find other swollen lymph nodes or problems associated with this?
I'm also curious if you experienced pain in your parotids or other new symptoms that you now know are related? I have had some aching type pain for months in the parotids but nothing too bad. Same for the annoying swollen lymph nodes under the jaw. I've also had increased fatigue and joint pain, but just figured it was from a flare or progression.
I really appreciate all your input.
CT scan showed something in parotid gland, results of biopsy was a lymphoma tumor large
MRI showed lymphoma in the orbital opening on left side
BMB did not get results, I think this Tuesday.
You can ask anything anytime, many times if necessary, more than happy to help.
Cricket
Do you have any other symptoms other then the parotid...like other swollen lymph nodes in arm pits, groin, chest, etc or other new symptoms?
I had a cysts taken out by my eye, but no swollen lymph nodes or other symptoms.
Anita and Cricket, wishing you both the best in this latest Sjogren's curveball. I clicked on this thread because I have been having left jaw pain the past few days and now pain has spread to my neck and my right jaw. It all just feels so tight and hurts to turn my head. The jaw pain hurts when opening and closing my mouth and when eating. I just wondered if that is similar to pain either of you had. I can't really tell if any swelling has occurred.
Thinking of you both.
My pain has just been subtle and swelling relatively minor, but both has been continuous. It doesn't hurt to turn my head. It's more of an ache with increases in pain now & then.
Thanks for the well wishes from you and everyone else that's posts. I will keep everyone up to date as I get through these tests...hopefully with good results.
Hi all and I'm sorry you are going through this stuff... I'm new to it and a little scared. I've had swollen parotids for years... I thought I had stones or something, but my ENT said no that I have SS. What worries me is this lymphoma talk. What can they do for lymphoma?
I am new to lymphoma, just got dx June 8th. Mine will require chemo which I think I will start soon, I see the dr on Tuesday now that all the tests are done. It has been a long 2 months.
I would suggest an MRI that is what showed mine. I will be praying you don't have it.
Cricket
A whirlwind of ENT visits and MRIS the past two weeks,, lost 70% hearing in left ear,, no fluid behind ear, MRI for that, showed pretty much normal, ?, then MRI on cervical spine, two herniated disc and more bone spurs, guess thats why my arms have been going numb, another round of blood work, by ENT,, still neg for SS,, ANA still neg, all bloods normal,, so whoknows,, now to paratoid glands, there shot,, they have atrophied, and prob will have to come out, sinuses are a mess again,, eating has become a chore insted of a joy, I dont like gagging constantly on stuff from teh sinusses and salivary glands,, I made it clear they are going to do something and no more of this we cant do nything for you,, last visit I took cracker and made him watch me eat one to see what happens afterwards, I dont think he appreciated a sink full of goo,, I hope everyone is having a good weekend,