These stats make me pretty darn happy I created this site. And not because I see how many people this tumor affects, but because I realize how "not-alone" I really was, at a time when I felt completely abandoned in the world. When I first started writing, I came up with 3 reasons I was creating this site. Let's look back on them....
- to have a place where I can track my progress. Yes, this has been a wonderful way for me to remember what I went through, see how far I've come, and to refer back when friends ask me questions about the surgery and recovery.
- to share my recovery with my family and friends. Well, yes, that part is done and over with. Because I no longer have the tumor in my body, and it has not reappeared over the past 4 years, I don't believe any of my friends or family ever have a reason to come out to this site.
- to help those who may be going through the same sort of health issue. This is where I feel the most proud of tracking my journey. I've had many readers reach out to me with questions and have asked for guidance while they are going through the same type of surgery.
If any of you had a positive experience and would like to add YOUR STORY to this site, please reach out to me. I'm more than happy to include your story here, as there are more than enough sad and discouraging stories blasted all over the internet about pleomorphic adenomas and parotid surgeries gone bad. This site is a place to provide a reassuring and positive outlook on a rather frightening time in your lives.
I hope as you read this you take away 2 things. 1 - if you are dealing with a pleomorphic adenoma or are about to undergo parotid surery, you are not alone. 2 - there are more negative websites and stories posted online than there are stars in the sky. But that doesn't mean there aren't as many positive stories out there. Mine is one of them. And I want you to remember that as you read other blogs and may become worried.
You're not alone. You're never alone. Ask any and all questions, I'm more than happy to share what I've gone through.
xoxox,
Kym
Hi Kym:
ReplyDeleteThank you for creating this blog. It was tremendously helpful to me when I was diagnosed with a pleomorphic adenoma in June of this year. I had surgery mid-July, and everything turned out great. I have a question regarding your post-surgery follow-up. Did you have MRI scans done? If so, how frequently? What does your doctor do during follow-up visits?
Thanks again for sharing your experience with us. All the best!
Hi - congratulations on a successful surgery - so glad to hear it all went well!
ReplyDeleteAs for my follow-up care, I've had MRIs of my face/neck done each September. This year I do not have one scheduled, but if I get nervous about it, my ENT said I could call and they'd order one for me. He suggested following up at the 5 year mark and run an MRI again then. And then if it's good, I could push it out 10 years. We'll see though. I'm nervous about everything, so I'll see if I can put it off this year and just wait until next September when I'll hit 5 years post surgery.
The first post-op visit he removed the stitches and checked the incision and scar. I can clearly remember him saying how proud he was of his work. Funny, but glad it turned out great too. Since then I just go yearly, and he pushes and prods to see if he can feel anything (he never can, as there's never been any bumps there), but we talk about what feeling has come back on my ear and around the face. He pulls up my MRI to show me where the gland is and how it looks today.
It's usually a quick appointment, in and out in about 10 minutes. It's a shame the drive down to Philly is a good hour (or more) and then parking and walking over the building is another 20 minutes... turns into a several hour process just for a quick follow-up appointment. This is the main reason I may not go for a 4 year post-op appointment...
Best of luck with your recovery!
xoxox,
Kym
Hi Kym:
DeleteI appreciate your thorough response! My surgeon suggested a similar post-op course of action - annual visits and MRIs. It's nice to know what others are doing, even though everyone's situation may be different. Thank you again for creating a forum where we can share experiences and support one another as we deal with this often scary diagnosis. Much continued good health and success with your follow-up visits!
Irene
Hello - I just found your blog..and have a quick question. I know you are no medical expert but maybe your answer can calm my anxiety. I got partied gland tumor surgery when I was 19. And now I am 25. so its been 5 6 years. Since the past years, I've noticed when I eat on my right side I feel a tingling sensation, my right side becomes kind of numb and I cannot eat on that side. That lasts for a day. and then I am back to normal. I am visiting a general physican soon so he can refer me for a biopsy. Do you this is normal?
ReplyDeleteHi there, you're right, I'm absolutely no medical professional :) But I can understand how you may feel a tingling sensation on the side where the tumor was removed. When I have lemonade or something sour, I get a quick tingle on my right side, as it's stimulating the parotid gland to produce saliva, and it's still ultra sensitive from the surgery 4 years ago. So you may be experiencing something similar. I'm not sure what would cause it to go numb and not be able to eat on that side of your mouth though.
DeleteI would suggest following your general physician's (GP's) advice, and perhaps even put a call into an ENT (the one who did the surgery if you can reach them), and see if they can get you on their schedule. Maybe they can even answer some questions over the phone. And usually it takes weeks, if not months to get in to see an ENT, so if you can at least get an appointment scheduled while you are waiting to see what your GP suggests.
Please do keep us posted! Hope they can quickly determine what's causing the pain and it all turns out okay for you.
xoxox,
Kym
Hi Kym:
ReplyDeleteI have a question regarding recurrence. Did your surgeon have any thoughts on what caused the tumor? My surgeon said that there were no studies to confirm causation. Are there things that you are doing to prevent recurrence?
Thanks again for sharing your experiences and thoughts.
Hi Irene,
DeleteHow is your recovery going? I hope all is well! My surgeon didn't have any real thoughts on what could have caused the tumor honestly, he just said it's just dumb luck. When I asked him if he thought it could be from cell phones held to the ear, he shrugged his shoulders. The studies haven't really found a 100% direct link to cell phones.
But having grown up in the 80s/90s when cell phones first came out (and being a teenager in the 90s when we all just HAD to have the phones), I can tell you that phone was to my right ear more often than it wasn't. So if I to guess anything, I would point at the cell phones.
Ever since I was diagnosed I've been using my phone mostly on speaker phone and I also text more now than ever before.
Best of luck,
xoxox,
Kym
Hi Kym:
DeleteMy recovery is going well so far. Thanks for asking. I look forward to needing the MRI much less frequently in the future. I hope your MRI is clear, and you only need to get it every 10 years... that's wonderful news!
Like you, I have avoided putting the cell phone to my ear since my surgery. Although the cell phone is a "relatively" new device and they don't yet have enough evidence to definitively link it as a cause of these types of tumors, there are enough studies to suggest a strong correlation that I have made the change - just in case :)
All the best,
Irene
Hi Irene,
DeleteSo happy to hear recovery has gone well! I will tell you, I opted not to have an MRI done this year, and I hope I made the right decision. I was just trying to cut expenses as medical seems to be eating into a huge chunk of our wallets these days. We used to have 100% coverage for radiology (up until 2 years ago), and now we are paying several thousand dollars before our insurance kicks in. It's insane. So I figured this year I'd skip, then get one for my 5 year check-up.
Keep us posted as you recover and move forward with life. I'll be thinking of you and will pray it's all part of your past now!
xoxox,
Kym
Hi all, i live in the UK and I had a similar surgery back in Feb 2002 but unfortunately the tumour came back and had a 9hr surgery in May of this year 2015. My consultant did say that it's rare for these sort of tumours to recurr but when they do they normally arent in a single mass (this happened in my case plus the tumour had grown so deep with multiple nodules under the skin around my right side of neck). I just finished 25 sessions of radiotherapy for this reason. It has really messed me up and I pray that it's the end of it till i leave this earth. Lost hair due to radiation and my facial nerve still weak but hopefully recovers well with time, i'm 34 yrs. The docs did mention still that they really dont know what causes these growths �� my right salivary glands were totally removed this time so face looks a bit funny but hey it could have been worse. No cancer cells were found. Best wishes to you all.
ReplyDeleteHi,
DeleteSo happy to hear there were no cancer cells found when they repeated the surgery this past May. It certainly sounds like an intense surgery to go on for 9 hours - wow. Can I ask how you found it had grown back? Were you able to see/feel anything? Did you have repeats tests done to monitor?
I hope your recovery is coming along well now that you are done with radiation. I will keep you in my prayers.
xoxox,
Kym
Hi Kym. Yes the tumour had grown so deep and had lots of separate nodules so they had to take their time plus take extra caution not to damage facial nerve. Unfortunately the doctors where i had the first surgery did not follow me up & i did not know any better, thot it was over after the surgery. I came to find out something was wrong when my right side of the face looked a bit swollen plus atound the scar from the first surgery there were nodules under the skin, i could feel the tumour inside n the doctor intially thot it was just scar tissue however the MRI scan revealed it all. I have gained lots of facial movement since the op but the radiotherapy has slowed everything down. I couldnt taste anything for over 2 mons just started having some taste come back. Flowing the surgery i have been left with a dent under my ear not too bad however i got 2 surgical scars as they had to cut a different area tho close to the first one. This time i have to watch myself closely!
DeleteHi Kym! I just wanted to say thank you for sharing your story, and I admire your courage. A bit about me: I'm 22 years old, finishing up my last year of college. About a week ago I found out that I need surgery on my parotid gland to remove a tumor. My ENT says for now we wait and watch and scan every 6 months. It's been difficult facing this since obviously my parents took it hard, but also because we lost my 8 year old sister to cancer 4 years ago and needless to say everyone is terrified of the "C" word. I'm most scared about the facial nerve getting damaged. I have read about the nerve monitors, but could you The scar I can live with. That's my story for now, I just wanted to say thank you again for sharing your progress and talking about the overall process in the amount of detail that you do, it has given me a lot of peace of mind. Your story gives me hope, and I'm very grateful for that. :)
ReplyDeleteHi Shnazzy,
ReplyDeleteI'm so sorry to hear about your sister. For you, have they performed a biopsy on your parotid tumor? That should be the first step to determine whether it could be benign (hence the "watch and wait") or something that needs to be addresses ASAP. Whichever direction you head (surgery or wait/watch), know there are quite a few others who have chimed in on this blog with their own personal success stories! Just be sure to get a second opinion prior to having any surgery performed, that's always my biggest piece of advice.
Best of luck!
xoxox,
Kym
Hi Kym and Shnazzy, Jill here. I had a full/whole parotidectomy in May which was a success except for the scar which is no big deal. I was wondering why Shnazzy's ENT is watching the tumor instead of removing it. It's slowly going to grow anyway so why the wait? The chance of cancer is small but it was a long Memorial Weekend waiting for the biopsy and fortunately negative. My ENT was the best. He's performed the surgery for 13+ years and he has had no facial paralysis paralysis. I'm from Wisconsin if that helps. From the time my family doctor felt the lump to could to surgery was two weeks. I just wanted to know why the watch and wait.
ReplyDeleteFacial paralysis patients.....
DeleteFacial paralysis patients.....
DeleteHi Jill,
DeleteCongratulations on your surgery! Yes, the scar will be there, not much they can do about that. I've seen pictures of scars across the face, down the neck, all over. So it seems each doctors performs the surgery their own way. My scar is still pink on my neck, under my ear, but you can't see the scar that was in front of my ear. But honestly I rarely notice it anymore, except for when I lean over on it and pain shoots down my neck.
I'll have to let Shnazzy reply too, but I will tell you I opted for the "wait and watch" approach because my tumor was small. The doctor couldn't feel it in my neck, and I would have never known it was there if I hadn't had an MRI to see why I was blacking out so often. My doctor said lots of people have these small benign growths and/or tumors, and often times nothing happens to them. They just sort of stay there and don't change. But there is the rare occasion when they grow and cause problems, either turn to cancer or end up wrapping themselves around the facial nerve. Once we watched mine grow after a few MRIs, I decided I was too nervous to keep waiting and wondering. I wasn't sleeping, I thought the worst was going to happen to me, and I just figured it was better to get it out before it grew and potentially became inoperable (without risk of damage to the facial nerve).
That's my story :)
xoxox,
Kym
Kym and Jill,
DeleteI realized I never actually introduced myself, but my name is Shay :)
I did have the needle biopsy and all that came back was chronic inflammation. The MRI showed the tumor, it's about 1.33 cm in diameter, so fairly small. I think there were a number of reasons as to why the doctor wants to hold off for now, one of them being that it's still . I'm still in my final year of college and it's been non-symptomatic so far, so we'll reassess in January when I go in for my next MRI. He was hesitant because of the scar and so long as it's not obstructing me in anyway he didn't want to operate. That being said I feel like I have a ticking time bomb of sorts and I'll have to get the surgery eventually anyways so I kind of just want to get it over with. I'm going to touch back with him and ask about the nerve sensor and get a better timeline on this.
What symptoms did you all experience? I feel a bit of tenderness in my jaw at times and I try not to sleep on my right but when I do it's always kind of tender the next morning. Sometimes I'll feel a bit of pressure in my ear but so far that's the extent of it.
Hi Shay - I apologize for not seeing this comment before now. I can't honestly say I experienced any symptoms prior to the surgery. The tumor was picked up incidentally on an MRI, and I never would have known until it grew larger and caused pains and/or other problems.
DeletePlease keep us posted and ask any questions as you go back for the follow-up this month. There are many readers who have different symptoms too, and different recoveries, so they can all chime in and help with questions.
xoxox,
Kym
Hi all,
DeleteI got a second opinion on the matter, but in the meanwhile my second MRI came back identical to the first (meaning no growth) and symptoms have been at a minimum. The jaw pain I was feeling progressed into TMJ disorder, which had nothing to do with the tumor incidentally. The second doctor that I spoke to was in favor of surgery, and that is now something that I am considering to get within the next six months, after graduation. Because it is so small, and after the TMJ incident back to non-symptomatic, both doctors agreed that I would ultimately have to decide when to remove it. I'll post again once the ball is rolling on the surgery process!
Thank you all so much for your stories and support. It has been very reassuring to hear of the success that everyone has experienced, and takes away any fear I may have had for the surgery.
Love,
Shay
Hi Kym and Shnazzy, Jill here. I had a full/whole parotidectomy in May which was a success except for the scar which is no big deal. I was wondering why Shnazzy's ENT is watching the tumor instead of removing it. It's slowly going to grow anyway so why the wait? The chance of cancer is small but it was a long Memorial Weekend waiting for the biopsy and fortunately negative. My ENT was the best. He's performed the surgery for 13+ years and he has had no facial paralysis paralysis. I'm from Wisconsin if that helps. From the time my family doctor felt the lump to could to surgery was two weeks. I just wanted to know why the watch and wait.
ReplyDeleteHi Jill,
DeleteCongratulations on your surgery! Yes, the scar will be there, not much they can do about that. I've seen pictures of scars across the face, down the neck, all over. So it seems each doctors performs the surgery their own way. My scar is still pink on my neck, under my ear, but you can't see the scar that was in front of my ear. But honestly I rarely notice it anymore, except for when I lean over on it and pain shoots down my neck.
I'll have to let Shnazzy reply too, but I will tell you I opted for the "wait and watch" approach because my tumor was small. The doctor couldn't feel it in my neck, and I would have never known it was there if I hadn't had an MRI to see why I was blacking out so often. My doctor said lots of people have these small benign growths and/or tumors, and often times nothing happens to them. They just sort of stay there and don't change. But there is the rare occasion when they grow and cause problems, either turn to cancer or end up wrapping themselves around the facial nerve. Once we watched mine grow after a few MRIs, I decided I was too nervous to keep waiting and wondering. I wasn't sleeping, I thought the worst was going to happen to me, and I just figured it was better to get it out before it grew and potentially became inoperable (without risk of damage to the facial nerve).
That's my story :)
xoxox,
Kym
This comment has been removed by the author.
DeleteYes, I agree, and still understand the caution. My tumor was small (7 mm), reassuring on imaging, and reassuring on biopsy. Bottom line, the only way to be 100% sure is to have the excision. My best advice, find a surgeon who does these at least monthly (multiple times monthly would be preferable). As an overnight stay should be required, a drive is worth it. I can attest; my lesion was an unexpectedly complicated surgery nerve-wise, and I have very little damage. The amount of time driving, energy, gasoline, and missed work was well worth the outcome.
DeleteI am happy to answer any questions.
Hello I live in the UK and have been told I have a parotid plemorphic adenoma in my last gland. On the same side I have an impacted wisdom tooth.
ReplyDeleteI am now experiencing pain in my temple and my ear and the lump is now sensitive. I've had my biopsy and waiting on results. The consultant has told me the scan indicates benign .. phew.
I've made the mistake of reading to much and I'm so scared. This blog has helped reading positive stories.. Hope my entry finds everyone well xxx
Hi, funny you should mention having the pleomorphic adenoma on the same side as an impacted wisdom tooth... I left the ONE impacted wisdom tooth in my mouth when I had the rest removed a little over 2 years ago, b/c the one was right near the parotid tumor and I was afraid of causing any more trauma to the area. Go figure, that ONE wisdom tooth started causing me problems when we were away 2 weeks ago, and I just had to go in for emergency surgery to have it removed.
DeleteAnd I'll add that this wisdom tooth removal surgery is so much worse than the surgery to remove the other 3 impacted ones. It's 5 days post-op and my chin is numb still, along with the gums on that side, and the swelling is still pretty evident (my lip is fat and it's hard to talk). The pain in my jaw is unreal... throbbing all day, every day, every night.
As I knew I didn't handle narcotics after my parotid surgery, I opted to just take ibuprofen 600 mg every 6 hours, but that is not enough to even take any of the pain away. I hope for your sake if you are young, get the impacted wisdom tooth out now before the roots have a chance to grow down into the nerve. This recovery feels just as brutal as my parotid surgery.
Best of luck.
xoxox,
Kym
Speaking of pleomorphic adenomas...
DeleteSo I had written back in January that my results came back the same for my second MRI, but got a call the very next day that the biopsy came back "questionable." Even then I was assured everything looked okay, but to have it removed ASAP. I had surgery to remove the tumor (partial parotidectomy) and the surgery itself was a great success! If you've had other surgeries, than this one in comparison is not bad. The surrounding area is generally numb and I was off narcotics the second day after surgery. Here's the kicker: pathology came back, and the tumor was cancerous (this is the part where I wanted to kick my doctor). After getting PET scans and seeing an oncologist, I am in the clear. But boy, was that a mentally traumatic process. To date, I have seen four different ENT's, and all of them looked at my scans and my age (I'm 22) and agreed it was benign. The risk with pleomorphic adenomas (which is what mine was thought to be before it was diagnosed as low grade mucoepidermoid carcinoma)is that over time they have a tendency to morph into the nastier things. The good news is that most parotid cancers are very very slow growing and non invasive. I had my tumor for a year before it was removed, and had no signs of nerve, lymph, or surrounding tissue invasion. I'm not saying this to scare anyone, but to take this very seriously. Over 80% of parotid tumors are benign, but that shouldn't be taken to mean that we're good to go. Needle biopsies are also not 100%, as in my case the second one still didn't detect the cancer. Lastly, these tumors are not uniform in composition, so the possibility is that one part was cancerous and the other wasn't, but without removing it I would have never known. Scary thought.
I feel my first doctor was all too lax with it and this whole situation could have easily been avoided had I had it removed in February 2015 when I first found the lump. All that said, I consider myself EXTREMELY fortunate to have gotten out of chemo and such. Again, I'm not trying to scare anyone but I hope that others can learn from my story and opt to have their tumors removed at detection rather than wait on it. And in all honesty, the surgery is really not bad, you just won't be able to sleep on the side with the stitches for a while.
Love,
Shay
Sorry left not last
ReplyDeleteHi Kym - thank you so much for your blog. I've just been diagnosed with a pleomorphic adenoma in my right gland - although my GP/doctor (I live in the UK) couldn't tell me exactly where as the hospital doesn't send the actual scans through to the clinic. I'm being referred to a head and neck specialist and should have an appointment in the next week.
ReplyDeleteHowever this couldn't come at a worse time as I'm already getting treatment for depression and anxiety. My Dad was diagnosed with cancer just four months ago and I was the victim of an assault two months ago.
Looking at everything logically, I've had this swelling on my neck for about three years. I went to my doctor to get tested for thyroid issues (as my Mum had issues with this) and all of my blood tests came back clear. The doctor told me it was probably nothing to worry about and if it got any bigger to come back in.
I don't know why but for some reason it started to concern me again this year. I don't think its necessarily got any bigger, but after all the emotional challenges over the past few months I think it just threw the swelling into sharp focus. And now of course it seems absolutely humungous. This is a really roundabout way of me saying - I know it's more than likely benign as I feel healthy in other respects, but with that said I'm absolutely terrified that if they have to perform surgery (and I think the specialist will recommend it) my face will droop and look weird and I'll experience hearing loss (I adore music).
I'm trying so hard to find some sort of balanced way at looking at this using the tools given to me in therapy, but I can't help coming back to these thoughts.
Anyway, thank you so much again for starting this blog - its been helpful even having a place to vent among people who are going through the same thing.
Also one thing I wanted to ask - ever since I went for the ultra sound scan my inner ear has started to hurt a lot. Has anyone else experienced this? I wondered if the frequency from the scan could have caused this because up until now I have not had any pain issues.
DeleteHi Smart Cookie,
DeleteI do not recall experiencing any pain from an ultrasound. Has it gone away over the past few weeks?
Hi Smart Cookie,
DeleteI'd love to hear how you are doing... did they perform a biopsy? Please know that whatever it turns out to be, if you do have surgery, there are positive stories to help bring your spirits up. I was terrified, and I mean TERRIFIED, to have the surgery done because of all the negative sites I found. I came out of the surgery just fine, and while recovery was a nightmare for me (I'm a big baby apparently), I don't have any real problems caused by the surgery.
Please keep us posted, and if you have any questions at all, please don't hesitate to ask.
xoxox,
Kym
Hi Kym thank you so for much responding and apologies for the delay in responding - my email is fit to burst with newsletters and all sorts and I've only just found your reply.
DeleteWell the goodness is - it is indeed a benign tumour no malignant cells. I actually ended up looking up surgeons in the salivary gland field and got referred via my medical insurance which means things are moving a lot quicker.
The surgeon I've spoken to says there's no rush to remove it and she's looking to remove the lump, rather than the entire gland. She said if I was going to get a tumour like this I've picked the right one.
Re: the prospect of surgery - I'm still concerned but nowhere near as terrified as I was. Partly due to my therapy sessions and partly due to wonderful resources like your blog, as well as the surgeon I went to see who's put my mind at rest.
My ear is no longer hurting. I think the first scan I did - the doctor was a little to firm with applying pressure and that probably made the tumour hit a facial nerve. My ear seems to be fine now - although I will say that after all the prodding about the tumour does appear to be larger than it was.
Overall I'm definitely in a more positive place than I was a few weeks back.
Thank you again!
DeleteYou are so very welcome. Please keep us posted and ask any questions you may have. There are many readers on here who can help answer questions also!
Deletexoxox,
Kym
Hi Kym - unfortunately my surgery was rescheduled because I picked up a viral infection. :-(
DeleteHope you are recovered from the virus and feeling better!
Deletexoxox,
Kym
Hi Kym, I had a parotid benign tumor removed 2 1/2 weeks ago. I am wondering if you had earaches after the surgery much? I have had them every day since the Nov. 23 surgery. Extra Strength Tylenol doesn't always stop them. They are intermittent, not steady pain at least.
ReplyDeleteI really appreciate your journey that you've shared on this blog. When I was diagnosed I went looking to see what to expect post-op and was so thankful to find this. My doctor didn't tell me anything except it's a one week recovery. So I would have been totally ignorant without this. Thank you so much. I look forward to hearing from you regarding these earaches. I also have some burning at the incision area, and so quit adding lemon to my water first thing each morning which helped curtail some of the burning, but not entirely. I will get back into that when I'm healed up.
Mary Jane
Hi Mary Jane,
DeleteI don't recall having specific ear aches, but I do remember having pain all on the side of my face, back towards my ear, after the surgery for quite a while. I couldn't sleep on that side of my face, and didn't like a scarf to touch the back of my face near my ear.
Does it still cause pain today, a month post surgery? I'm almost wondering if what you're experiencing could be nerves as they are starting to fire off and repair themselves. I am praying for a healthy recovery for you, and hope you can write back and let us know how you are making out.
Oh, and about the lemon - to this day I still cannot drink or eat anything sour - it makes me wince in shooting pain when it hits that area of the salivary gland. I also remember anything too warm or too cold causing a shooting pain. That did go away over time (several months or so), but the lemon and sour things still are no good for me, four years later.
xoxox,
Kym
Hi,
DeleteI also had/ continue to have earaches. They come and go, and I do believe it is neuropathic, or "nerve" pain. I have had it checked multiple times to make sure, and am constantly reassured. Hang in there!
I have diagnosed pleomorphic adenoma last night surgery is done successfully the doc has done superficial paridectomy today is my ist day after operation but I can not properly smile my cheeks and are numb the doc said it vl take time have u faced the same problem plz tell me I'm worried
ReplyDeleteHi Tahir,
DeleteIt can take 6-12 months for the nerves to completely regenerate. I am 1 month post op, and I still have quite a bit of numbness to the entire side of my face, and can smile about 50% on the same side. All things considered, I am so relieved. I was terrified to have the surgery, and so happy I did. I had mucoepidermoid carcinoma. Overall I couldn't have done better.
Jen
Hi Tahir and JenV,
DeleteI hope by now you are both doing better, and the numbness continues to go away little by little. My numbness in my ear and right side near the incision took a few years to fully go away, but honestly today I do not think there's one section that has any numbness remaining.
Please keep us posted. Wishing you both a full and speedy recovery.
xoxox,
Kym
Plz guide me is there any need to follow-up doctor after the surgery is there any chance of recurring pleomorphic adenoma what are the precautionary measures that tumour can't come back
DeleteHi Tahir - I wish there was a way to guarantee the tumor does not grow back. Unfortunately I have not heard of any precautionary measures to take. As it seems, they truly don't know exactly what caused it to grow to begin with.
DeleteI would highly recommend going back for follow-up appointments with the surgeon to discuss how well you are healing, any nerve damage, and even to have them order MRI tests to check and make sure the tumor has not grown back. Perhaps your doctor may have other tests for you to undergo also. Mine typically provides a script for an MRI before my appointment, then I have it done so I can take the films (CD of images) in with me when I go for my follow-up.
xoxox,
Kym
Thanks kym I vl definitely follow up my doc
DeleteYes, I absolutely believe you should follow-up. My situation was a bit different, as I had/have a cancer that was (probably) removed (thankfully, biopsy was inconclusive!?!), and am still awaiting radiation. That being said, always follow-up. :)
DeleteHello Kym, Shnazzy, and all,
ReplyDeleteMy husband found this blog, and it has been helpful to me throughout this plight. Thanks to you all! Briefly, I found a lump in my left cheek 1+ years ago, and have been battling with an ENT to consider a biopsy for 7+ months. I was finally convinced myself that watch and wait was safest. He was very reluctant to do a needle biopsy considering the reassuring imaging, both US and CT. I am also a RN, so I fully understood the implications of such a surgery, so I was not a big fan of signing up for a parotidectomy. FYI- I also consider myself a young 38. :)
The biopsy of my 7mm lesion (pea-size) was inconclusive, and favored inflammatory changes. The ENT wanted to continue and watch, because the US and CT were both reassuring. However, my PCP strongly recommended me to have the area excised since the pathology, although reassuring, was inconclusive for a 38 year old. I took her advice and underwent a left partial parotidectomy at Dana Farber this month, and am so thankful. The surgery lasted 4.5 hours, and a tumor entwined in facial nerves was transected and removed. The good news; it was a cancer, and I found it. I have mucoepidermoid carcinoma, and can now treat it. Although removed, the closest margin was less than 1 mm, so I require radiation (although technically optional, but hello, 38 years old!?!) for 6.5 weeks, 5 days a week. I had low-grade cancer, and a small tumor, so likely no spread. Negative lymph nodes. I am overall healing well, with some minor facial nerve damage, no Frey’s Syndrome, but SO thankful I did this considering I have a chance of full recovery. Had I listened to the ENT, my outcome would eventually be far different.
So… at the very least, I would recommend a second opinion, and If you are in an area, see a specialized source, such as a cancer center.
If anyone has any questions, please don’t hesitate.
Happy Holidays!
Xxxxxx
DeleteKym~
ReplyDeleteThanks so much for sharing this. I am towards the beginning of this process and anticipate surgery this year. Reading your story and advice has been hugely helpful and encouraging. I pray my ultimate outcome is as good as yours.
Hi Ashley,
DeleteI'm so glad to hear my story provides help and encouragement. It was all incredibly terrifying when I went through it four years ago, but I'm thrilled I took the time to research and visit a few doctors, and then most thrilled with how things went. I'm happy to answer any questions you may have before or after the appointments - please do not hesitate to reach out.
xoxox,
Kym
Hello
ReplyDeleteI wrote the post prior to Smart Cookie - I am also from the UK. I suffered terrible fear and anxiety through the very same journey and in all honesty found this blog and for the first time - I calmed a little.
Needless to say Smart Cookie I've had the surgery.. I am fine :) I cried going down.. Fearful and I recall waking in recovery and saying .. I can feel my face I can smile .. I still get teary now!!!
It was a stressful time for my family and I.. I am now 7 weeks post surgery and well on my way to normal health.
I did experience inner ear discomfort prior to surgery - your experience is almost identical in fact..
I've had my post op results no nasty cells and lump removed in tact :)
Keep faith keep us posted xxx other than a few teary moments.. All is very well xxx ongoing health everyone xxx
I should add I do have numbness and as the specialist advised - this is shrinking .. and normal.. The fine pains are nerves firing back apparently .. Odd sensation having a numb ear but not traumatic xx
DeleteOh Ally, I am thrilled for you! So happy to hear the surgery went well, the biopsy showed no cancer and that your recovery is going well. I'm sure each day you'll notice more "firing" pains from the nerves and hopefully that begins to mellow out as they come back to life and establish their new "norm". Congratulations on all of the happy news with surgery - really, that is something big to celebrate!
Deletexoxox,
Kym
Also Kym... They are also planning to remove the impacted wisdom tooth on the 30/03 I opted for local as I was so scared of being asleep and also fearful of more trauma on that side ... After reading your blog I think I may rethink this decision :( xxx
ReplyDeleteHi Ally, please don't let me scare you. BUT I will warn you. I'm in my late 30s and they only did an x-ray on me. I am still, to this day (over 6 weeks post-wisdom tooth surgery), having numbness and a bit of extreme pain on my chin, lip and gums from this darn surgery.
DeleteI saw another oral surgeon yesterday and discussed surgery to repair the nerve (very risky, not a guarantee and also rather painful as they cut out a section of the bone, repair the nerve and then use screws to mount the bone back in). What I learned from this new oral surgeon is that HE performs CT scan on EVERY patient that appears to have roots growing anywhere near the nerve. This way he can see exactly if the root goes through the nerve or if he can avoid damaging the nerve. MY oral surgeon did NOT suggest a CT scan, he only did the panoramic x-ray and from there he said he could see the nerve and root together, but he wasn't sure if it meant the nerve was in front of, behind, or through the root.
Point being, he should have never performed the surgery without having me get a CT scan. Sure it costs more money, but it could have avoided the problem I'm having today. We then could have discussed removing just the tooth and leaving the root in there, or perhaps doing a different type of surgery. I'm devastated to learn there were true options to be more certain about where the nerve lies, and so I want you to know you CAN and SHOULD ask your oral surgeon to order a CT scan if there's ANY question about where the nerve and root sit in your mouth.
If only I could turn back time and ask the question myself.......
Best of luck to you, and please keep us posted.
xoxox,
Kym
Just a quick comment. I don't think you can see nerve either on X-ray, CT scan with or without contrast or even MRI.
DeleteMRI is useful for soft tissues and if someone is having symptoms (like pain) and presence of herniation or lack of space means soft tissue there is most likely a nerve.
Hi all - so my surgery is scheduled for 6 February. I've been told to get to the hospital by 7am but no further information about what time the procedure will begin.
ReplyDeleteNeedless to say as I get closer an closer to the day my anxiety is slowly increasing. Trying to stay calm about it but it almost feels like I'm marching towards doomsday. Of course it doesn't help that I've never had surgery before so its even more daunting.
Sorry for the rant - I just needed a place to vent!
Hi there - February 6th, huh? Please know I will be praying for you and for the surgeons, and for a speedy and healthy recovery. Your anxiety is completed warranted, there's no denying that. But as I'm sure you've read through some of the comment from folks here who've had the surgery, there are lots of positive outcomes and I have no doubt you will be one of those too... and you'll come back here to share YOUR story with us! Feel free to send me an email with your story - how you were diagnosed, tests run, surgery, post-op, or whatever else you want to share, and I'll post it on here! My email is kymber33(at)gmail.com.
DeleteAlso, if you have time before your surgery, make sure you clean your bathroom well (just in case you have any nausea after you come home.... you'll thank you later!), wash your sheets the day before (so you can enjoy lounging in a super clean bed for a while), and get all your laundry done (so there's no pressure to have to do anything as soon as you get home).
Also, again, time permitting, make a few meals and toss in the freezer. Easy things you can thaw and throw in the oven or crock pot. Some of our favorites are:
http://www.ayearofslowcooking.com/2008/11/salsa-chicken-and-black-bean-soup.html (we leave out the mushrooms, and just toss in frozen chicken...boneless skinless breasts are good, but thighs are even better) - for this you can just be sure to have everything on hand and toss in the crock pot in the morning.
http://www.marthastewart.com/271998/perfect-macaroni-and-cheese (we use pecorino romano cheese instead of Gruyere) - this you can make ahead of time and freeze, just leave off the breadcubes/butter, cover top with saran wrap pressed against it so there's no air bubbles, then cover in foil. Easy to thaw overnight in fridge and bake the next day).
http://thesistersdish.blogspot.com/2013/02/crock-pot-cheese-tortellini-soup.html (another crock pot recipe, you can have all the ingredients on hand)
Hope this helps! If you have any questions when you're getting yourself ready for surgery this next week, please don't hesitate to ask. You will be in my thoughts the next few days....
xoxox,
Kym
Hi Kym - I thought I'd updated everyone but I must have forgot. My surgery had to be postponed unfortunately as I had picked up a respiratory tract infection which then led to my asthma becoming much much worse.
DeleteI've only just started to get over it. I'm looking at a new date of Saturday 2 April which is bit later than I wanted, but I'll use the time to get things ready as you suggested in your excellent tips above.
Thanks again for your kind thoughts and words.
Hi Kym, I just wanted to thank you. I'm 24 and just want through a left superficial parotidectomy on the 3rd. I'm a total pessimist and you blog helped me cause no one else understood my concerns. Although it's only been 5 days I've been in a lot of pain the last 2 days the most. Mostly in my jaw. And oddly enough all of my swelling is where my gland is. Makes me look deformed. Unfortunately I woke up in a rediculous amount of pain today and the swelling is worse and weird shaped. So I may have to call my Dr. But all of your blogs definitely helped me as none of my family really understands lol. Plus they like to talk alot and after this that's the last I want to do. But I remember I was so nervous about him hitting my facial nerve that when I woke up and I was all groggy I told him thank you for not melting my face lol. All and all he did a great job. And your scar looked great from what I saw. I had plastic surgery on the left side of my face due to some intense wounds from an accident. They had to remove the scar a year later and zig zag it to help blend it. I just remembered you said something about the pointed or edges on that one picture. Anyways. Thanks for the ramble.
ReplyDeleteKatie
This comment has been removed by the author.
DeleteHi Katie,
DeleteI'm so glad your surgery was a success and my stories were able to help you through preparing and what to expect! How is recovery going now, two weeks post op? Did you lose any feeling in your ear or around the incision? I hope the main pain has subsided by now, although it's not uncommon for you to still experience some pain, as there is probably still some swelling going on.
Praying you are on the mend and will be back to yourself in no time.
xoxox,
Kym
Yes I did lose feeling in my ear and around the incision. They did put in a drain however and the drain didn't work so my face was pretty swollen from all the fluids backing up in my face. But now it's much better. No pain really. Just a little swelling still. And a some jaw pain when I yawn and open my mouth wide. And The cold does bother that ear. But other than that no pain and the scar is hardly noticeable.
DeleteHello Kym: I had my surgery one week ago. I did not do any much search before had. I have few questions, I hope you are still reading this blog and appreciate any answers from you or others in similar situation.
ReplyDeleteDid you numbness of lower ear lobe ever go away and how long did it take?
Did you have face weakness? I have it side of post tumor surgery. How long did it take?
I have trouble opening my mouth due to restriction on side of surgery. I had surgery on Left side. I feel some thing strange in back of my throat (oropharanyx) and I think it sort of numbness.
When are you able to exercise?
thanks a lot putting this website and sharing your story.
Hi,
DeleteEveryone heals differently, but yes, I did experience numbness of my lower ear lobe for quite some time. Probably 3 years or so before it went away fully. It didn't really bother me much, was just numb when I squeezed it. I do not recall any face weakness though, other than the first few weeks right after surgery. It took some time to be able to fully open my mouth and chew easily.
From what I recall, I wasn't really given the go-ahead to exercise for a few weeks. But I remember feeling awful and sick the first few weeks, so it was not a huge deal. I remember them saying not to lift weights above my head too, so I just did small bicep curls and tricep extensions (bending at the waist).
I hope by now you are feeling much better and have recovered quite a bit from surgery.
xoxox,
Kym
Hi, I just had my surgery a week ago today. I still have a lot of pain, especially up towards the temple area and down towards the jaw area. I am still quite numb around my ear and out across my jaw and down some. I go back to my doctor and hopefully get the staples taken out. This is all on the right side and I sleep on this side so it has been hard for me in this respect. The doctor did warn me though that there could be some numbness for a bit after the surgery.
ReplyDeletepam50: Where did you have your surgery done? No one in his or her right mind will use staples on face! That is is sign of high turn over doctor.
ReplyDeleteI had my surgery 2 weeks ago and it turn out to be pheochoromocytoma, I got a letter from insurance company saying they will deny this as it was medically unnecessary procedure. Any idea how to handle this?
ReplyDeleteHi - I am not an insurance expert, but have had plenty of problems with insurance not covering things. I would first reach out to your doctor and talk to them about the insurance denial. Ask them for a letter from your doctor stating exactly why he/she felt the surgery was the appropriate treatment, and then submit for an appeal with your insurance company. Do not pay any money up front, it will become even harder for you to get it back in the end. But be sure to call all the providers who are billing you (and who now aren't being paid) and let them know you are disputing it with your insurance company. They should make a note on your account so they know you are actively working on it, and not trying to skip out on the bill.
DeleteBest of luck!
Kym
Unfortunately my pleomorphic adenoma the size of a golf ball was declared elective and had to be paid for out of pocket with half down. Needless to say, it will stay where it is.
DeleteI live in Wisconsin, towards the southern part. When I went back the staples were removed! I still have numbness at the lower ear, across the jaw midway, and along my jaw line. I'm told this will gradually disappear, most of it. I also got my path report back and that was good news! The doc said my paritoid was in really bad shape though from all the swelling that it has done. It was getting to the point that the swelling wasn't even going back down all the way, it was leaving a knot over towards by my ear.
ReplyDeleteIt seems we had surgery about the same time (I have mine 15 days ago). My swelling is almost gone as you can't see it on my face but it is still tender. Not sure tenderness is due to numbness or post surgery inflammation.
DeleteI have been recovering very fast. I was running/biking 2 days after surgery and no issues. I think exercise seems to help me as I feel much better post cardio.
Numbness is over ear and over the jaw near ear. There is muscle weakness and it is very evident when like showing my teeth or smile or whistle. It seems like facial muscle weakness has improved some what from day one.
I have difficulty open my much and it is not same as before surgery. Any idea how to handle insurance billing any one please?
Hi Pam, I'm so glad your surgery was a success! The numbness you are experiencing will gradually go away, but you'll have to be patient. Very patient. I had pretty much given up and thought it would never go away, but nerves take a long time to heal and little by little it got better. I'm now four and a half years post surgery and there's no numbness on the ear anymore. But I'm still sensitive to the touch along the incision line on my neck. The incision line on my face (in front of my ear) is perfectly fine, but the one along my neck makes me gag and tighten up in pain when even lightly pressed.
DeleteI wish you all the best with healing. Keep us posted!
xoxox,
Kym
I have question here. I had paratodectomy before 3 months. What kind of care I should have to take?
ReplyDeleteShould I do exercise? Weight lifting?
I am feeling good but still some numbness is there at operated place.
Thank u in advance.
Hi Tushar, I would check with your surgeon and see if there are any restrictions on exercise or weight lifting since your surgery. Mine said to gradually get back in to things, but that was hard for me. I wanted to pick back up right where I left off, and be able to run and workout like normal. It didn't take long to get back though.
DeleteAs for the numbness, yes that's really very normal. Mine took a few years to finally go away on my ear lobe. So stay positive, nerves take a long time to heal, so you may wake up one day and find that you can feel just fine!
Wishing you the best of luck with healing.
xoxox,
Kym
Hello Kim: Glad to you see back and for our comments.
ReplyDeleteDid you have facial weakness? Like someone ask you to whistle or show me your teeth and smile. I have real weakness on side of surgery and it is only noticeable when if i am showing my teeth.
In typical partoid gland surgery there are no muscles are cut as gland is just below skin. My doctor told me that there is a hole after surgery and they have to fill it up something like fat from surronding area or pulling digastric muscle (this the muscle below chin). He did pull digastric muscle in my case one can see bulge below TMJ joint.
From your picture on the website right after surgery it does not seems like the case and I don't see any swelling either.
I guess I was not that lucky as I did have quite a bit of swelling, bulge from muscle pulled in, numbness and facial weakness.
Did have any speech problems. I feel (now even after 3 weeks after surgery) some issues. Lets say you have root canal treatment or wisdow tooth in lower jaw has been pulled. Right after that how do you feel. Thats how I feel and I find my speech a bit restricted but others tell me they don't find any thing different. May be just me or numbness/facial weakness is bothering me.
Thanks again for your input!
sorry I meant Kym not kim!
DeleteHi,
DeleteI'm sorry it's taken a while to respond, life has been crazy with end-of-the-year things with school and the kids.
I don't recall any actual facial weakness, as I was able to smile and make silly faces at people. It was painful at first, but once swelling went down, I was okay.
I also don't recall any speech problems, but it could have been my surgery was a little different than yours, or the tumor was wedged in there slightly different. I'm sure with swelling still going on a few weeks after the surgery, you can feel the difference and hear it as you move your mouth. Hopefully by now all the swelling has gone down and you are able to talk and move your mouth pretty normally. Please update me with your recovery!
xoxox
Kym
No worry, I was enjoying beautiful this year in the south!
ReplyDeleteFew Things Happened over last month or so. Facial weakness decrease significantly. There was still swelling at month 2 post op. I think it put some pressure on nerves there too. Now face numbness is significantly gone 3 months post op.
Speech is normal too and I don't any more feel strange while talking.
At 2 months post op, I start to feel something in the ear lobe. Have you seen ice on a glacier cracking and then melting. It was like some thing is happening there. Now 3 months post op I can tell it is half numb. If I pinch then I can illicit pain. Still sort to numb to touch.
My doctor was very adamant that he made lots of effort to save that nerve and it will be back to normal function. He told me that has done over 2000 parotid gland surgeries over the years.
Thanks for your input!
anon
My fiance having the same problem..facial paralysis.. it's 3 weeks now.. hope he will get his smile back
DeleteAll of you mention surgery for the mass. But only a few of you mention the size of your tumors. What was the size of most of these tumors? From what I understand, most of your doctors recommended surgery, is that accurate?
ReplyDeleteMine was 2cmx1cmx0.6cm
ReplyDeleteI still have hardness/swelling in front of my ear. I'm worried that once the swelling goes down, there will be a dent.
I got a superficial parotidectomy done about four years back. I was having some numbness and it uses to pain if the area under the ear lob was pressed. However, since it did not bother me much, I ignored it. However, now I find there is swelling in the area, it pains and I find turning my head difficult. Is it normal? Can you please give me your opinion about what action should I take
ReplyDeleteI was diagnosed last year but because it was not cancerous I ignored it. Now it is larger and hurts...I'm sure it has become malignant. I am hating myself for waiting...and hating myself more for ever starting to smoke. I'm really anxious and concerned.
ReplyDeleteAnd I now am working in Korea and the language barrier alone scares me in having the procedure done here...in addition to them not taking my insurance.
ReplyDeleteI had my parotid gland surgery five years ago. I still have severe pain in my right jaw and all around the outside of my ear. Doctors seem to give anti depressants for this but they do not agree with me. I am so frustrated the pain is so bad sometimes I cry. I feel my doctor really screwed up. Any suggestions
ReplyDeleteParitoid tumor with malignant cells.surgery this week.afraid its spread. Neck and esr ache
ReplyDeleteI discovered a pea sized bump near right ear in November when I consumed a cocktail and had a burning sensation by both ears. After a CT and ultrasound I was diagnosed as having a parotid cyst. Needle biopsy findings are not entirely specific so ENT wants me to do another one plus an MRI. I believe the first biopsy created more problems with the cyst because now it gets swelling around it that will start to go down as I hold my fingers on it. Has anyone experienced this? And she wants another one done?? I can’t even schedule the 2nd biopsy until I get results of MRI. This waiting is ridiculous. I wish I can just get an answer soon as to what my next step should be. I’m scared half to death of surgery. I would love to avoid it.
ReplyDeleteSince my husband had his parotid gland removed he has fluid draining out of his cheek and behind the ear has anyone else experienced it.
ReplyDeleteHi. I normally sweat when i’m eating, this is normal since they have taken out the salivary glands. Or does he have a wound?
DeleteIt comes from a small spot on the cheek and a small spot behind the ear as you said when he chews no sweat.
DeleteThis comment has been removed by the author.
DeleteGustatory sweating https://parotid.net/freys-syndrome-treatment/
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