We see quite a few "hits" to this blog each day (upwards of 50+/day), and I'm curious to know what's brought you here, any questions you may have for me, and if any of you have gone through the same surgery.
I don't have any great new updates to share, as everything seems to be the same as the 2 year update. Weeks go by without even thinking about the incision, but every now and again one of my children will hug me a little too tight around my neck and it will cause a shooting pain. But it immediately goes away once they loosen up.
I couldn't be happier with my decision to have the surgery, and I know I made the right choice to see Dr. Ara Chalian. He's not only a funny and very personable physician, he does great work and left me with barely a scar.
So, if you have any questions for me about the surgery or recovery, please leave a note below and I promise to do my best to get back to you. Thanks!
Hi, I found your blog a few days after I was diagnosed the same thing. It seems my tumor is tiny, <1cm and very superficial. Everyone tells me everything should be OK and I really want to believe that, but I have to admit I am terrified. I am entering the hospital on Thursday, surgery planned Friday the 6th, "D-Day" ;-). I am really grateful for what you shared on this blog, it's a gift of hope, a rock to hang on. I hope I can soon make a little comment on your blog to share how well it went, fingers crossed. Thank you again. Take good care of yourself. Flo
ReplyDeleteHi Flo,
ReplyDeleteI'm glad this little blog was able to offer some guidance and hope. I've been awful at keeping it up, but honestly it's because nothing has changed. Life has been great, and there's no problems since the surgery... which makes for really boring updates on here! I will be saying a prayer for you this week, and do hope you come back and share your post-surgery updates with us. And if you have any questions as you recover, feel free to send me a message.
xoxo,
Kym
Hi Kym, Hi everyone who might come across this blog,
ReplyDeleteI got out of surgery 4 hours ago. The surgeons have told me they performed a much "easier & simpler" surgery than what was expected (superficial parotidectomy). The last exams made, showed a very small, single, mobile and superficial tumor (<1cm). They chose to "enucleate" (sorry for my english), taking a large "safety" margin. The facial nerve was monitored, but never even approached, they even managed to preserve the nerve at the bottom of my ear, I feel totally amazed by the luck was granted. There will definitely be a "before" and an "after" to this episode of my life, I know I'll take things differently now. I have never felt so frightened, so vulnerable, your blog has been like a "life-line" to hang on to, when my mind was going out of control, I will remain grateful for what your shared, always. If you ever think of shutting the blog down, maybe because you think it's been so long, or for any reason, just remember what role it can play.
Thank you again Kim.
Greeting from Switzerland.
Flo
PS: The doctors tell me I can go home tomorrow, wow...
Hi Flo,
ReplyDeleteI'm so happy to hear surgery went so well and you're already well enough to write us! It's incredible they were able to fully preserve the nerve at the bottom of your ear and such wonderful news! Take it easy as you recover and stay on top of any pain meds they give you... at least for the first few days. Things got crazy for me during the recovery,but it sounds like we had tumors in slightly different locations - so you may have absolutely no problems at all.
Thank goodness the hardest part is over, you came through surgery with flying colors! Enjoy your night in the hospital (good luck sleeping with all the beeps and visits from nurses), and best of luck with recovery. And just remember that sour foods/drinks and maybe super hot/cold foods, may make your gland *spike* and cause a quick sting... that's all part of the healing process. I love lemonade, but try to swish it on the left side of my mouth.
I am so relieved to hear it all went well, and thank you for such a kind note - it brought tears to my eyes. I started this blog to help others who may go through what I did, and I am so happy to hear it helped you.
xoxo,
Kym
Hi Kym.
ReplyDeleteI came across your blog when I googled about this tumor, case I felt like I have one.
It was started since the beginning of 2012, I felt my lower cheek up to the tip of my jaw had this weird sensation, like it's being pulled or something. And then, I felt one of my lymph nodes enlarge a bit, and still stay the same til today. And 1 year ago, I noticed there is something behind my jaw that is larger than the left one (it was on my right jaw). I was so afraid, I didn't got to the doc and started googgling. I came to conclusion that it must have something to do with my parotid gland but I wasn't sure either. I've been developing impacted 3rd mollar on my lower jaw, and it's also caused some pain and problems with ear, I wonder could the impacted tooth cause it too? I also had some clicking sound when opening my mouth.
I am a bit confused, what significant changes that you actually had when diagnosed with the tumor? Is your jaw visibly swollen? Did you feel it when you touch it? Cause in my case, I can feel something swollen, but it's not visible unless I touch it, to be short it doesn't make any significant changes on my face.
I am looking forward to your reply, I hope it's going to enlighten me cause I honestly has been stressed out by this for the past 2 years.
Hi daedeyy - Let me first start off with strongly suggesting you see a primary care doctor! They can run some tests and order bloodwork to see what's going on.
DeleteIn my case, I had symptoms of lightheadedness from the sitting to standing position, so they ordered MRIs to see if there was something going on inside my brain. That lead to all of the other findings... you can read about it all by clicking the "How it was diagnosed" tab at the top of this page. But to answer your questions, there was not visible lump, I couldn't feel anything in my cheek or mouth, and I really wouldn't have known about it had they not done an MRI.
So I really do hope you consider reaching out to a doctor and having them run some tests to help diagnose what's going on. Take care!
Two weeks ago I had surgery to remove a tumor that turned out to be more extensive then expected. I found your blog in an attempt to find out how long it usually takes to get some movement and a relaxed feeling in my facial area. This blog has given me relief to the stress I have been feeling about this. I wasn't really advised to stretch my neck but will make sure to start doing this a few times a day! Thank you for sharing your journey!
ReplyDeleteHi Brandy - oh how I hope your recovery is going well now and you are able to move your neck and face pretty well at this point. Healing definitely took some time, but once I got past the first few months it was smooth sailing. As I read back over my initial weeks, I realize I sounded like a crazy woman, worried about some of the pains and things, and worrying they'd be around forever. But honestly it has all gone away and that part of my neck looks normal now. So I will be praying your healing has gone smooth and you have a healthy recovery. xoxoxo
DeleteHi Kym, thanks for your blog. Over the past 18 months-ish I've slowly been growing a right-sided lump. I'm a 26yro nurse. After x2 inconclusive fine needle biopsies, we decided to have it removed (superficial parotidectomy). The only problem being, my lump was quite far forward on my cheek- probably about halfway between my right nostril and right ear lobe. This meant that the surgeon would have to make the same incision you yoursel had, but extend it right down the back of my skull along the hairline.
ReplyDeleteEverything went well- I'm now 8 days post op. I came to your blog looking for reassurance re pain. I knew the swelling, numbness of course was normal, but my daily nausea and pain has been nothing short of horrific, despite being over the 1 week mark. I'm usually good with pain! Hopefully it settles down but it's creating so much anxiety for me.
I hope you are well and thanks again for your experiences (especially post op reports).
PS- Goes to show us nurses get worried about these sorts of things too :)
DeleteHi Grace,
DeleteI'm so glad they were able to remove your lump - did you find out what type it was from a biopsy after surgery? I"m sorry to hear your nausea and pain is still so brutal, but rest assured it certainly can be part of the normal healing process. As you read here, it took me a while to get back to a "normal" feeling and not be so sick and nauseous - it truly surprised me how long that lasted. And the blogs and stories I had read online had me completely terrified and freaked out for the surgery and the after effects, but no one really provided a day-to-day diary of how recovery went for them. I am glad this site has helped your fears, although it does absolutely nothing to take away any of the pain or sickness.
I'll be praying for a healthy recovery for you, and for the pain to quickly diminish. Please keep me posted! xoxox
Hey there Kym. I want to just start by saying thank you so much. I am a 23 year old, fresh out of college and just found out that the lump in my jaw was a tumor. As the Dr. was explaining it to me, I felt my heart drop to the pit of my stomach. I had to hear the news alone and with my best friend/boyfriend 28 hours away. I went in for my pre-surgery appointment and he made my stomach sink even further. Loss of movement in the face, a large scar, numb ear, and the list went on and on. I did all I could trying not to cry. My bf and I are looking to get married next summer and all that kept going through my hear was everyone will see my scar. After all, my right side would be facing EVERYONE. Not to mention, I sleep on my right side. Constantly. And that's the side I sleep on to cuddle. Plus, bear hugs! I am a daycare giver and I get amazing hugs from my 1 year olds everyday. Honestly, I've been trying to calm my nerves about this surgery (on Aug. 28th) since I found out about it. Searching high and low for something that would help. Turns out surgeries on Youtube made it worse. Then, my employer told me I should look for images of recovery instead of surgery. So, I did. You picture popped up. Honestly, there were a lot of pictures. The reason yours stuck out was because you reminded me of an old friend I played tennis with. Well, that was reason enough. I started reading and the things you wrote were exactly what I was feeling. To a t. The moment I knew I should keep reading was when you mentioned butterflies. Yes. I said butterflies. They are my absolute favorite. In fact, (yes, this is weird) I got the chills when I came to that part of your blog posts. So I kept reading. All of it. I just want to thank you so much for putting this out there. Honestly, I am still incredibly scared. I had my first breakdown today and I am sure there are many more to come. Mostly for the scar, possibility of not being able to smile, and the mere idea of being unable to help myself. If you have any words of wisdom, please don't be afraid to tell me. Again, thank you so much for this blog. I'm thankful you never took it down!
ReplyDeleteHi REnewed - I now have chills reading your comment above, and it truly brought tears to my eyes. While I don't know you, I certainly feel connected already and am so happy that my story has helped you in even a little way.
DeleteThe surgery is absolutely scary, and my number one recommendation is to get a second opinion in the next few weeks. Keep the surgery date, but see if you can get into a second ENT's office for another opinion. I had several different ENTs over the years, the first one wanting to immediately remove the thyroid (b/c of nodules) and entire parotid gland. I ended up going to The Hospital at the University of Pennsylvania, to Dr. Ara Chalian, as I was referred to him by my husband's aunt (who works at the Children's Hosp of Penn and she spoke with one of their children's ENTs to get their opinion on it all). So, ask around for another ENT in your area, even if it means traveling an hour or so to visit them. It's worth it to have another opinion and be sure of how they'll do surgery.
Also, ask your surgeon if they'll be using the nerve monitor during the surgery. This seems to be commonplace these days, especially in the United States, but you never know. Worth asking. And if they aren't able to do that, definitely get another opinion.
You can call and ask your ENT's nurse these questions - believe me, I called my nurses every few days with more questions... the girls got to know me on a first name basis and they were AWESOME in helping me calm my fears of the surgery. And they honestly spent so much time on the phone with me, sometimes telling me they'd call back at the end of the day so they could talk for longer periods of time. It was exactly the level of professionalism I needed for such a scary surgery. It saved me the hour trip down to the city, and I would call them after every new blog I read or horror story I stumbled upon on the internet. And that's really what lead me to create this blog - I needed to track my progress to let others see a positive story, something that would give people hope and comfort, something that would let you know it CAN turn out perfect (even though at the beginning of recovery you'll feel sick and you'll cry and you'll think "what have I done??"). Yes, I went through all that, but I am happy to say it was the best decision I made to get the surgery done and get that tumor out of my body.
My other suggestion would be to for you to start your own little blog to follow your journey. If nothing else, it can be a place for you to track your progress during recovery. And believe me, the first few weeks it feels like you're making NO progress at all, but then you can look back and say "hey, I wasn't able to do that just 3 days ago..."; every little bit further you can turn your neck, lift a pasta pot full of water, sleep on your right side, pick up the daycare kiddos, and just go about your daily activities, you'll feel that much better about your decision to get the surgery. Please know that I'll be praying for you on August 28th for a successful surgery, smooth recovery and healthy healing. Please keep me posted, and if you do decide to start a blog, send me your link. If you have any other questions, by all means, please reach out to me. xoxoxo
ps - keep allowing yourself to have breakdowns. They are normal and healthy. Cry and let it out.
DeleteAnd trust me, I had plenty of breakdowns - usually right after I put the kids to bed and they had given me great big hugs. Sometimes I cried to my husband, but I was sure he had heard enough of my fears, so I usually just locked myself in my room and freaked out alone.
And once you've allowed yourself time to freak out, put on some Bob Marley and think "every little thing gonna be alright". That song still brings me to tears today when I hear it because it was truly my mantra in getting through all of this. xoxoxo
Hi everyone,
ReplyDeleteI had a parotid tumor surgery last week (thursday). My pleiomorph adenoma was diagnosed a few weeks ago and it appeared to be quite big (3 cms). The surgery was successful (all the tumor gone, no damage to the facial nerve, my ear is numb, but thats normal I guess and they told me that sensations there will come back in a year. ), but since monday I can't eat any kind of food (not even a yoghurt), because everytime I do, it hurts and the parotid gets full of liquid. I went to see the doctor and he told me that its likely that some of the saliva (?) does not go to the mouth but flows into the parotid. For a few days I am not allowed to eat, but its not 100% sure that it will be fine again, worst case scenario is that I would have to undergo a new surgery to take out the whole parotid since its not functioning good. Anyone experienced something similar? The whole area is swelling and painful (maybe even more than after surgery).
Hi Kym and other PA friends -
ReplyDeleteMy name is Abby and I'm a 30 something married mother of 2 little ones. I am having my surgery Monday Aug 3, 2015. Reading this blog has made me feel a little better about what is coming up but worried about risks involved, recovery time - with a full time job and 2 small children could be a rough few weeks/months. Luckily we have parents close by and good friends and my husband is a wonderful partner. I am ready to get it out and move onto my recovery. Thankful to have found this blog with some great insight and background to what to expect. So glad to hear your surgery was a success and I hope I am just as fortunate.
Hi I'm Vanessa and I just wanted to say thank you for sharing your journey with us. Finding this blog has made me feel that I'm not over-reacting. I have two pleomorphic adenomas (salivary gland) on the right hand side of my neck, half way down. On Tuesday I found out when my surgery will be and whether I will have 25 days of radiation, or whether they will decide that chemo is the best option for me. People hear the word benign and automatically assume that you really have nothing to worry about but the thought of radiation, or chemo scares me; plus the recovery after surgery isn't fun (I've been there before in 1988).
ReplyDeleteWhat were the side effects that you had to the radiation?
Cheers
Vanessa