And so, I return w/another doctor baffling issue :-X
At some point a bit over a month ago, I noticed that my usually 'quiet' submandibular lymph (left) had suddenly plumped significantly. In all my 30 years of lymph activity due to various illnesses, etc, the left is the more 'reserved' of the pair, w/the right one being the attention craving, 'boisterous' one. Well, now Mr. Lefty Lymph has decided it's his turn to be seen, but not quite heard...it's firm, painless & apparently not planning to lie down anytime soon...& because it was painless, I didn't notice it sooner. Tender nodes get all the attention, painless nodes are so easily overlooked.
Considering how Mr. Righty Lymph likes to randomly become tender & swollen (even when I'm not quite "sick"), my ENT instructed me that I should really only worry about painless swelling that has lasted more than 3 weeks & to come in should that ever occur. Needless to say, I went to see him a week ago.
This had to be one of the shortest office visits I've ever had--he palpated my neck for a minute w/a concerned expression & asked again, how long Mr. Lefty Lymph had been upset. I told him 1 month (that I know of)...at this point he recognized that ALL of my cervical lymphs on the left side were firm as well--from behind my ear, all the way down to the shoulder--this led him to state very matter of factly "you're at higher risk for Lymphoma, you need an MRI right away". :-\ I knew this but who wants to think about that? Considering that he's one of my docs' that always has another possible explanation for everything, it was a bit unnerving that he was being so concerned & had nothing else to offer.
I had my MRI's last week & the results were inconclusive. He determined that all the nodes down to the top of my lung on the left side, were enlarged & that something is definitely "not right"...& that my parotid gland which is now swelling, isn't right either.
This is where it gets fun..He decided on an FNA/Fine Needle Aspiration, but then decided I should have an incisional also since an FNA wouldn't rule out as much as the incisional. Then he asked if I currently have an oncologist--this made me twitch--should I have one, even tho' I've never had cancer? Is this something he's expecting just because of SjS; that in my 'army' of specialists, I probably have an oncologist lined up "...just in case"?
At any rate, the FNA is tomorrow. Incisional on the 26th. To ice the cake, I've been having some nasty tooth pain on the left side. Had a filling redone over a month ago, that was said may need a root canal, but now I can't tell if the pain is from all the enlarged nodes & swelling, or if its a bad tooth...So everyone has agreed w/me, that I should wait to find out what's wrong before examining the tooth issue further. Waiting waiting waiting, sucks :(
Has anyone else had an issue like this? Not specifically of course, but something similar? I read a lot of Lymphoma & Lipoma posts but I can't quite relate to any of them. As usual (& as my doctors have jokingly pointed out) I'm an "alien" case, hah.
I think I just need some piece of mind, I'm stressing out & can't sleep. All this medical crap keeps putting me behind on rent & my cat is STILL waiting (3 months now!) for his thyroid to be removed :'(
As always, thanks for any insights that you may have.
Starlore,
I'm sorry but the only excisional biopsies I've had were of my left breast. The waiting for reports was horrible.
I do wish you the best of luck with these tests and a negative outcome. This is one time I hope and pray it's not positive.
Take care and hang in there, "this too shall pass".
Hugs, Pooh
Sorry you're facing this, Starlore, but best to know for sure about these things.
I had an excisional biopsy of my scalene node, just where the neck meets the shoulder, in the vee of the collarbone. It caused no post op disconfort, and healed very quickly (no stitches, the surgeon closed the 2 inch incision with crazy glue!) In my case the very enlarged, rubbery, painless node tested as sarcoidosis. I've had both submandibular glands become swollen, rubbery but painless, but both receded within months of starting Prednisone, so were not biopsied.
Please let us know how the procedures go, and when you get the results.
Hi Starlore,
I've not had any biopsies like this, but I want to let you know that I'm sending you lots of positive thoughts and hugs for upcoming appointments. I can certainly understand how frightening this must be for you!
I hope that the tests go smoothly and all results are negative....know that we are here thinking of you and keep us updated on how you are doing!
(http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)
HI Starlore
Sending you lots of positive thoughts and a big hug.
Kathyx
I've done sooo much research online & everything is just so...negative! Its nice to just hear that there's a possibility other than cancer--not that sarcoidosis is a walk in the park, but if i had to choose...lol Not too worried about the actual biopsies so much as what they could indicate hah. God knows how SjS loves to give give give!
Thank you so much for all of your warm wishes, it really does mean a lot! So easy to get down about these things :-*
Lynnmarie, I love your hug! Its so cute! (http://www.freesmileys.org/smileys/hug011.gif) (http://www.freesmileys.org)
Star,
My blood went cold as I read your post and memories of my own "benign tumors" came back to me.
Honey, this really could be something other than cancer.
I had bumps on my thyroid and a golf ball sized tumor in my left submandibular salivary gland. Just like yours, it was not uncomfortable in any way. My doctors freaked out and told me not to touch it at all or even to touch my neck. The surgeon said he would not biopsy it because it was coming out no matter what and scheduled surgery within a couple days.
When it was removed and determined to be benign I was more than relieved till I got another one about 8 months later and went through the same exact drill including the doctors all acting like they were sure I had cancer. They and I worried the first one was somehow mis-read by the lab and a cancer diagnosis had been missed. It wasn't.
My dear, I am praying like mad over this and for your fear which makes it hard to sleep, to think, or talk to people about the bloody weather.
Janna
Hey Starelore,
I just want to add my positive thoughts and prayers your way. Its a whole new world of freaky when they throw out that C word and waiting is the worst. Us sjoggies have got to be the most patient people in the universe. The thing is these lumps could be anyting and as an 'alien' case with you even more so. As you said our little gift is one that just keeps on giving and giving.
I will keep everything crossed that there is nothin big going on and your lumpy bits will return to normal very soon.
take care
Pud
Hi Starlore :)
I'm with the others. I'm sorry you're in this predicament and I'll send all the positive thoughts I can muster your way.
The only thing I'll add is that I've read, if the worst comes to the worst, that lymphoma responds well to treatment.
I hope it doesn't get to that.
Good luck - take care - Scottie (and let us know what happens)
Yeah, Scottie is so right.
I've read it's real curable and very slow growing.
Starlore
I remember several years ago I had a doctor send me to an oncologist and I was certain I must have cancer. They did blood work and xrays while I was there. They were all equipped for everything. It turned out I was not diagnosed with cancer, but the day was not a fun one . It was all the fear I felt that caused it to be so scary. It turned out my gp was just being careful about everything which I know is a good thing, but she use to scare me so. Just remember that though people do get cancer, most of the time it is not cancer. Today though when it is, they can treat it so much better. So try to not worry too much until you find out. And, I know that is silly to say, but just try.
susanep :)
starelore, I am so sorry to hear that you are facing all this scary uncertainty. You will have a long few weeks waiting to get this all done. My prayers are with you for a positive outcome.
I am very interested in this tooth that needs the root canal that you had worked on about a month ago. Sort of makes one wonder about infection, etc. Things always come in 2's or more and it makes things all that more confusing. Hope that your cat is surviving without his surgery---his turn will come!!!Irish ;D
Thanks so much for all the positivity everyone!
I really was taking all this in stride for awhile, but w/all this waiting comes entirely too much time for your thoughts to drift in stupid directions, especially when the Docs' are shaking their heads in such morbid manners lol! Admittedly, I'm not a very patient person, but I do try very hard! I'll get thru' it tho', I promise :D
The needle biopsy was this morning & went very smoothly other than a tad of discomfort afterwards. Just a great big relief to get it done--one down, one to go! I should have some generic, preliminary results on Monday, then its on to the big wait for the big biopsy haha :-X Hurry up & wait is always the rule of the medical game.
...Meanwhile, I'm trying to distract myself w/work & the millions of other things I need to keep up w/on a daily basis--should help--I hope! I will definitely update when I get some news in the near future!
I love you guys so much, my sanity would be so lost w/out this community. Makes me feel like I'm stable ground for a change.
JannaLee, incidentally, did they ever give you an explanation for your tumors (Lipomas?)? Or was it just something they shrugged off as SjS related "weirdness"?
They were ranula's. The first one was a deep plunging ranula and very firm feeling. The second one was not plunging, it was in the floor of my mouth but also very firm and fast growing.
From what I understand a ranula is just a benign mucous filled tumor.
No one ever explained or even wondered out loud why I got them, in fact I was the one who asked if maybe I have Sjogren's because I Googled "chronic, benign salivary tumor" and Sjogren's is what came back. My surgeon laughed at me and said he was sure I didn't have it but tested me because I asked him to...
Looking back on it all, I realize he didn't spend any time at all wondering what caused my tumors after he found out they were not cancerous!
The blood tests came back strongly positive ANA, Rheumatoid Factor, SSA, SSB. I've never had the lip test.
Star, I'm hoping the worries will stay at bay through this...I'll just admit right here and now that I was a big bowl of blubbering goo during my 2 scares!
Sending you my very strong wishes for a benign outcome and not too many sleepless nights between now and then!
Janna
Janna, sadly, its not surprising to me, that they didn't follow-up enough to determine -why- you were having tumors. Nowadays, the medical world has really become such a joke in this regard...so many breakthroughs & so little compassion or regard for the human condition. Of course, there are some good Docs' out there, but its disheartening that for each good one, there seems to be at least 5 indifferent ones :-\
Regardless, I'm glad that they turned out to be ranulas & nothing more pressing. Good for you for giving that Surgeon a clue :D
For the record, I slept pretty well overall last night...better than I have all week at least! Thanks again everyone for all those positive thoughts & wishes, looks like they're paying off! :-*
Star honey,
I agree with you. My surgeon is very brilliant with a knife. From what I hear that first tumor was a real bear to get out because it was so big and because the nerves that work the left side of my mouth were wrapped all around it. He left me with an artfully hidden scar and only the slightest bit of nerve damage. No one has noticed it but me (when I put my lipstick on or smile real big).
He, nor my primary doc ever thought about "why" but I've run into my surgeon's office manager who says he is SOOOO proud that HE diagnosed my Sjogren's. What a funny man.
I figure, if it truly means a lot to him, maybe he will start to think a little bigger for the rest of his patients and this will make a difference in a life down the road.
There is nothing better than a good night's sleep. This is healing to body and mind and hopefully will continue!
Thinking of you every minute,
Janna
Wow that's great Janna! The hands of a good surgeon are an awesome thing...My ENT shared the same complications w/me as being on the table, but I don't know if he'll be doing it himself (think so) or whether it will be another surgeon entirely ??? Another of those questions I should've asked but didn't even think about, because this week has been such an overwhelming stress already--my job is totally insane right now & I'm completely worn to the bone.
You should've thrown a party for the Office Manager that figured out SjS! Thats a huge feat! ;D
The results of my needle biopsy were "inconclusive", not sure what to make of that exactly, but my ENT suddenly wants to completely remove the node now, instead of just a piece. I wonder what made him change his mind since before he was against removing it? :-\ Ah well...Now I just hurry up & wait some more.
Well, its over...& oh god what a nightmare! Please humor me while I vent for a moment :'(
My ENT changed his mind prior to surgery & decided he wanted to take a more "superficial" node, so he took one of the cervicals or whatever from my neck just a bit below the submandibular. That was fine & dandy, & so was the surgery itself I suppose. Waking up on the other hand, was a whole new set of woes...
Probably about 5 minutes after regaining consciousness, I was throwing up. I figured this would happen since its pretty common to anesthesia, but I wasn't prepared for that to be the story for the next 24 hours. I literally couldn't get wheelchaired out of the hospital before I was at it again. I barely made it home & as soon as I got in the door, yep, back to the porcelain god. Not to be gross but I threw up over 17 times Friday evening alone. Everytime I tried to drink water, it came up before it made it down. Is this a 'normal' reaction to anesthesia? I expected a couple of times, but this was a bit much?
To make matters worse, I ended up w/one of the worst migraines I've ever had & the fact that I couldn't keep anything down meant I couldn't take my Maxalt to relieve the agony in my head. So now the tally was no Maxalt, no painkillers (they gave me Percocet & those make me sick enough on their own) & no antibiotics (Augmentin--you guessed it, makes me sick! Colitis for 3 months last i took it). So, I wallowed in my misery like a good girl, praying for a break in it all. My ENT prescribed some suppositories for the nausea finally, which didn't really work terribly well. Finally, yesterday, I managed to stabilize my stomach & drink & eat something. I was so dehydrated, that in all honesty I probably should've gone right back to the hospital, but I was so miserable I couldn't even entertain the thought.
As far as my wound goes, its not so bad--some achey pain in my neck/shoulder overall & the tip of my tongue is numb--but i think thats from the swelling pressing on the nerve maybe? I'll point it out to the ENT on Thursday when I get the stitches out, if its still an issue.
Anyway, I'm back at work now & debating whether to cut out early or not...Pretty weak & shakey, my head is wonky when I walk around & I'm a bit nauseated again. Maybe a fever, not sure. Better by far than previous, but not so good overall.
Thanks for letting me vent, I hate to complain since I know there are so many that have been worse off, its just been a long weekend & I wanted to shake a bit of it off so thanks for listening :)
(((((((( Starlore ))))))))
Sounds like a nightmare! I've been like that after anaesthetics and it's horrible. (Not after every anaesthetic - but certainly some - and it seems to be unpredictable.) I would think that throwing up would make a migraine twice as bad as usual too. Maybe a little bit of the throwing up WAS the migriane. My friend's son had to have suppositories for his migraines because they made him throw up so badly.
I hope you rest up and recuperate as much as you can and we're always here to listen to a good going vent!
Take care - Scottie :)
Good grief!
They should not have discharged you in such a nauseated state! This is shoddy medical care! This is the anesthesiologist's job!
If you ever go "under" again tell your surgeon and your nurse and your anesthesiologist you have TROUBLE with nausea post op and could you please get the nausea medicine that can be administered by the anesthesiologist during surgery!
You could very well have become extremely sick from dehydration, bleeding, infection, etc from this terrible episode.
I think it imperative you listen to your body right now and GO HOME TO BED!
Wishing you a better day, and speedy recovery my dear Star!
Janna
Hi Scottie & Janna :D
Yeah I was thinking maybe it was one of the medicines in particular they used in the anesthetic 'cocktail', because last time I had it I didn't have any problems at all & that was just about a year ago. I think I'm going to start keeping track of what they've used, maybe to narrow down the margin of "ughhh". Maybe then if I ever have to have surgery again, (God I hope not!) the docs can figure out what will & won't work for me. I don't really blame the hospital because I only got sick twice while there...Once I got home tho', oh boy!
I've also read about some medicine they can give you a day or so prior to surgery to prevent nausea post-op...Funny, something told me to ask for that before my surger, but did I listen? Nooo lol! I'm pretty sure I've learned my lesson!
Till then, I'm feeling fevery/ill for sure, so I'm going to be a good girl & go home to bed. Somehow this doesn't feel like dehydration anymore :-X ENT Thursday so I just have to hang in there!
Thanks for the concern as always!
Starelore honey,
If that fevery shivery gets any worse don't wait until THursday. Call your doc or go straight to the ER. There is a chance you still could bea bt dehydrated as well which can exacerbate the fever and stuff and make it harder for your body to cope. You need to get something with a bit of glucose in it too. Maybe even some gatorade to replace the salts youhave lost when vomiting. Your electrolytes could be all out of wack. GO home take it easy and rest kepp up the fluids and take whatever it is you guys take over there to reduce fever.
Remember if it gets worse don't wait.
Pud
Star,
I'm so glad this is behind you. Please let us know about results when you hear. Hang in there!
Cheryl
((((((((((((((((((Starlore)))))))))))))))
I'm glad its over but I'm sorry that you were so sick afterward and still aren't up to par! Please take good care of yourself and rest as much as you can.....and as Pud said, maybe you should call the doc tomorrow if you aren't any better instead of waiting until Thursday!
Please let us know how you are doing and what you find out.....sleep well tonight! (http://www.freesmileys.org/smileys/sleep016.gif) (http://www.freesmileys.org)
(http://www.freesmileys.org/smileys/signs062.gif) (http://www.freesmileys.org)
Update: Saw the ENT yesterday to have the stitches removed & he said the biopsy results showed hyperplasia, so he wants to go back to the "watch & wait" approach to see what happens next & then more biopsies in the future. Ugh. >:( From what I've read hyperplasia of the lymphs is associated with Castleman's Disease, which just seems like another way of saying lymphadenitis, since nothing I've seen really pinpoints anything specific about it other than that there IS something going on & it causes big nodes. Hah, I figured that out w/out a biopsy lol! I'm just being cynical because I hate chasing my tail.
Don't get me wrong, I'm thrilled that its not lymphoma, but we all know how annoying it is to be back to square one w/more questions & no closure--something isn't right (or at least doesn't feel right), but of course, nothing can be done about it.
I'm very happy that the worst has been ruled out, even if just for a moment, its just so frustrating! I know that you all know what I mean so I don't need to elaborate.
I still feel a bit "off" but the ENT thinks the anesthesia affects are just dragging out so hopefully I'll be back to "normal" in a few more days. Time to follow-up w/the Rheumy & then get on w/my next root canal.
Thank you all so much for your concern & support thru this... :-*
Hi Starlore :)
I totally understand your frustration but I'm also really glad that it's not lymphoma. That's good news at least. I hope you feel a bit better soon.
Take care - Scottie :)
Hey Starelore,
Im so glad that it is not lymphoma. I know its frustrating not having answers. Hang in there buddy.
Pud
Ok here's something for you all to chuckle at!
Figured out the vertigo & feeling "ill" overall. Well, I was trying to clean up some of the mountain of crap & papers that has piled up on my desk & lo & behold, what do I find? My discharge paper from the hospital of course! I'd never seen it till now...& it stated "return to normal activity on Mon. Oct. 6". :o
Silly me thought that "outpatient procedure" meant that you go home the same day so surely you can go back to work a day or so later...right? WRONG! My mom had signed my discharge papers & didn't realize I hadn't found it yet. So here I am, struggggggggggling to go to work every day & feeling like crap because of it, when I was supposed to be taking a week off to recover. Oh wow I feel stupid! So now the pending flare will kick my butt because I was dopey & stubborn & overdid it haha. Ah well, I couldn't afford the time off anyway, I have to pay rent!
Just thought I'd share so you could laugh at my folly! I know I am :D
That is funny Starelore. I'm surprised the doc didnt tell you verbally though. Oh well Put some padding on that butt and hunker down for the impending flare. Lets hope it will bekind to you .
Pud ;D