Thursday, May 12, 2016

Got questions?

So I'm at four years and eight months post pleomorphic adenoma removal surgery on my right parotid gland. Throughout my recovery I've posted notes on this blog, but the past two years I haven't had much to write. Honestly, it's because I'm doing good. The incision has healed beautifully, the scar is barely noticeable, and I've regained the feeling in my lower right earlobe. 

The numbness in my earlobe took quite a long time to resolve. Years. But nerves regenerate very slowly, or so I'm told, so I've waited patiently and every few weeks I'd squeeze my earlobe to check and see if I had any feeling. I'm happy to say, at some point I was able to fully feel the pinch and there was no longer a tingle in my ear. As I pinch both earlobes now,  I can't feel any difference between the two. They are both fully aware of being pinched.

As for the incision, if I run my finger down my neck starting at the base of my earlobe (along the scar), I immediately feel nauseous and sick. It's very sensitive along the incision line, but what's funny is you can barely notice it's there. And with it being on the side on my neck, I rarely, like a few times a year, notice it. Definitely when the kids wrap their arms around me and their little fingers hit along the scar, but they are careful and usually avoid it. Maybe when I'm putting on a scarf in the winter. Never when I'm working out, eating, shopping, folding laundry, cleaning, or doing any of the other million things I do throughout my days.

Would I have the surgery again? Absolutely, without a doubt! But I would still visit a few surgeons and see who I'm most comfortable with, who answers all my questions and calms all my fears. Thankfully Dr. Ara Chalian was that surgeon for me, down at the Hospital of the University of Pennsylvania. If you live near Philadelphia, I highly suggest you make an appointment with him. It's worth the wait, I promise. 

Do not rush your decisions on treatment and do not rush to have surgery. Sit down with a few doctors and get their opinions, then see what you feel most comfortable with. I can't stress that enough. I'd love to hear from you all if you've had surgery and how your recovery is doing. Also, please feel free to ask any questions here, there's lots of folks who have been through this and can chime in to help guide you along the way.

xoxox,
Kym

94 comments:

  1. Hi Kym, I had my surgery almost a month ago. It seems to be doing fairly well. I still have some numbness along the jaw and down towards my ear, and my lower ear lobe. I go back to see my doc on the 31st of May for a post-op check. Sometimes I get a shooting pain in my ear, I don't know what that is from, or if that is to be expected. Will keep you posted.

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    1. Hi Pam,

      I do hope the pains are subsiding now, but they could be the nerve trying to heal itself from the trauma of the surgery. Stay positive!

      xoxox,
      Kym

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  2. I'm glad that you decided to do the surgery. I had my surgery 2 weeks ago and it appears to be much larger than yours, over 4cm. I waited to long but thankfully went to an amazing Doctor. My incision is only from the top to the bottom of my ear. Though I was just happy it was benign mixed and lucky removed before it turn canerous. Hope you're healing well.. Still waiting for the feeling at the bottom of my ear to come back.

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  3. I'm glad that you decided to do the surgery. I had my surgery 2 weeks ago and it appears to be much larger than yours, over 4cm. I waited to long but thankfully went to an amazing Doctor. My incision is only from the top to the bottom of my ear. Though I was just happy it was benign mixed and lucky removed before it turn canerous. Hope you're healing well.. Still waiting for the feeling at the bottom of my ear to come back.

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    1. Hi Jeremey,

      Congratulations on a successful surgery and getting it out before anything worse happens. Two weeks is pretty soon after surgery, so I can imagine you'll have numbness for a few weeks to a few months, if not longer. But stay positive! I SWORE my numbness would never go away (yes, really, I just *knew* I was destined to have a numb ear), but after time the nerve healed and all is well. Praying yours is the same way! Keep me posted!

      xoxox,
      Kym

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  4. I had my surgery 5 days ago and I'm expiercing facial weakness. My lips can't move in certain directions and I'm having trouble talking,eating, and smiling. From what I read you didn't expierence any facial weakness but I was hoping you'd be able to give me some advice. Have a safe and happy 4th!

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    1. Hi,
      Hope you are doing better. I am now 3 months post surgery and can totally relate on the facial muscle weakness. It seems that everyone heals differently, but I can say from my experience that I have improved significantly. My lower lip on the side of my surgery still does not move like it should. I am told that it may continue to improve over the next 6-9 months. My impression is that I have not regained as much movement as my surgeon expected, that said it is a great improvment from the first month after surgery. For several weeks I was constantly aware of my lip when talking or eating; now I dont feel as awkward. I generally only notice it when I smile big or try to floss. At any rate it is better than a tumor that would continue to grow. Be encouraged.

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  5. Had my surgery yesterday and so far seems things went great. I'm not having much pain and not experiencing the possible negative side effects I read about. I waited 3 yrs to have surgery - laziness on my part. I would not recommend waiting that long as Dr. said tumor was deep. Oddest post op problem I have and not read anywhere. My shoulder feels like it was pulled out of its socket. I'm a "big" guy and assume it's a tendon or muscle strain related to the position my arm was placed in during surgery. I hope there is no tear, it hurts worse than the incision

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    1. Hi Frank,

      By now I do hope you are healed and your shoulder is better. My first thought was that it was shifted during surgery so the muscle may have been sore. But 9 months later, I hope you have experienced a full recovery!

      xoxox,
      Kym

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    2. Hi Kym
      I am one week post op and every time I chew anything, even soft food I have severe jaw and ear pain that does not pass for several hours. Did you experience any of that, or perhaps any of the readers?
      Thanks for all your info!
      Laurie

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    3. Laurie. I had pain for almost 3 weeks after surgery. By 4th week it was much improved. Be patient and give yourself time to heal. ☺

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  6. Docs saw a 2cm mass in paroitid after ct scan... i felt the lump myself n had it checked out. Waiting for fna results and its terrifying! If its benign, i cant decide if i should wait to remove. I was ttc and this is such a bummer.

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  7. I am 77 yrs. young and had parotid mass surgery 7/21/2016. So far so good....sleeping, pain lessened, and eating okay. I don't think any one should wait on surgery. The sooner mass is removed, the better. Good luck to all who have this situation going on. Time heals....

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  8. I'm facing my 4th round with parotid tumors. My first was back in 03, I went to the doctor because I felt a small node on my jaw line, stated having earaches, headaches, tingle along the jaw and chin. (left side), doc did a fine needle biopsy - it was benign. Had it removed. Recovery went well. 4 years later I stated getting the same earaches, headaches, zingers but didn't feel a numb but was concerned. Went back to the same doctor and he brushed me off saying if I can't feel anything there wasn't anything. I went back to my primary doctor and he sent me to another ENT. The did a MRI and found I had another tumor. Had surgery to remove it. Recovery went fine. Then in 2013 the earaches, headaches, zingers started again. Went to the ENT that removed my 2nd tumor and his partner suggested I try radiation because the tumor was wrapped around my major facial nerve. I under went 30 radiation treatments in hopes to stop the big one from growing and killing any smaller nodes. Radiation was tough and hope to never have to do something like that again. It has affected my taste buds, have dry mouth and have lost teeth due to the damage... which I was never told that could happen. Here I am once again facing this but aside from the earaches, headaches, zingers I have noticed a swelling in my neck and my neck and shoulder hurt all the time.....the doctor that said try radiation seems bewildered and somewhat "no big deal". He the biopsy showed benign and MRI has found two tumors - one deeper just below the big one. the big one protrudes out just below my ear lobe and I "pinch" almost an inch of hard stuff, as well as pinch a good lump in the neck. the doctor didn't seem interest in checking my neck saying it's just a muscle but it's not like that on my other side. And he was just blute and said all I could do is have surgery to remove the lumps. I'm very nervous this time due to the facial nerves involve and the attitude of the doctor. I have decided to travel 3 hours from home to get a second opinion and possible surgery. My left side of the head seems to be getting worst with the pain and I hear buzzing all the time in my head. Could just be stress. I thought maybe someone on here has had multiple issues with benign tumors. Kim

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    1. Hi Kim,

      Wow, I am so sorry to hear you've been through so many different surgeries and procedures for these darn parotid gland tumors. I do not recall seeing any messages from anyone who has undergone several surgeries for tumors that keep coming back.

      I certainly hope by now you've had the surgery to remove the larger ones and are healing well. You were smart to go back to the doctor when feeling earaches and headaches. It's amazing how often we (people) are pushed off by doctors, yet we know our own bodies and we know when things just aren't right. Good for you for fighting for yourself.

      Prayers for a full recovery and to never have to go through all of this again.

      xoxox,
      Kym

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  9. Hello kym :)
    I am so glad I found this blog of yours.I am 21 yrs old,I was diagnosed with pleomorphic adenoma last yr. I am studying abroad so last yr by the time we found the tumor and diagnosis was done my vacation was over... This time I am doing the surgery...the surgery is scheduled on Aug 2nd /2016 ..this Tuesday... I am a medical student(UG)...and I am quite aware of the surgery procedure.. Possible complications and stuff....but all that theoretical stuff did not give me any peace of mind as the post surgery and recovery stuff u hv recorded in this blog did:)...my parents are really anxious and that too is making me worried..
    If there is any pre surgery tips you can give me...it would be great..I haven't told about my tumor or surgery to any of my friends or professors... More ppl I tell ....means ...they all get worried and will keep giving me a variety of advises.. And it makes me more tensed and worried so I opted not to...planning to giv em all a surprise after surgery :D
    Anyway..hope all goes well,without any facial nerve injury and complications :D
    Have a goood day kym !!
    And thanks a lot :)

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    1. Hi Alisha,

      I hope by now your surgery went well and the recovery process is coming along well also. I'm sorry I did not see your message until just now, months later! I hope there were some messages and stories on my blog that helped you get through the surgery and early recovery, and see how different every person's story is, but that many have full recovery over time.

      Prayers for a continued successful recovery.

      xoxox,
      Kym

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  10. Hi I confirmed mine is benign and the not able to eat spicy/sour food is quite a big one for me because thats usually what I have everyday. Have you heard of anyone tolerating spicy/sour food? Also can you recall at what point in time you were able to pick up your kids? Or is that not a problem on the left at all? Will wearing a back pack hurt 2 months after surgery? Thanks.

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    1. Hi IZ,

      How long after the surgery did you start feeling the intolerance to spicy/sour food? Did it go away now? I am experiencing the same and would like to know if it gets better with time.

      Thank you.

      Delete
  11. Can I ask how long you had it? Thanks Helen

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  12. Can I ask how long you had it? Thanks Helen

    ReplyDelete
  13. Hi Kym!

    How great of you to publish this blog and share your story. I had a superficial 5 cm benign mass removed from my left parotid gland just over two years ago. I am still experiencing some facial numbness in part of my cheek and lower ear lobe that I am perfectly fine with. My main concern is that I have been having a tingling nerve-like sensation from under my eye all the way to the incision line under my jaw. Is this something that you experienced along your healing process?

    James
    Delray Beach, FL

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  14. I had my surgery back in July 2014. I have had 2 yearly check ups so far and doctor says everything looks beautiful. The scar is barely visible. Still have a little numbness. Have pretty much all facial nerves functioning normally. I just have the longest facial nerve still that is a little wonky. When I saw my doctor last he said he was happy with the recovery and that the twitching in my lip means the nerve is good. But it will still take time to fully heal. I was curious if you've regained complete function of your facial nerves. If I smile big, you can see my lip is still a little wonky. Thanks!

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  15. Hi I had my op 5 days ago..feeling down, scar is ok but concerned about my droopy eye. From what I've read it will get better but it scares me. Waiting to find out tumour results too. But would love to know other people experiences/reassurances

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    Replies
    1. Hi Janie,

      I hope your pathology was reassuring, and you are recovering well. I had my surgery in December '15, and I experienced severe facial droop for 1-2 months. I am now happy to report despite the numbness, my facial nerves have regenerated, and I have full use of my facial muscles. I hope this is also the case for you.

      A word to all, it is best not to hold off on the surgery. My FNA biopsy was inconclusive, but felt to be benign. The imaging; US, CT and MRI was fairly reassuring. I fought with the ENT for 7 months to convince him my concerns needed addressing. I went into the surgery with my surgeon believing the 7mm nodule was benign. Unfortunately, it was not benign, but a fairly rare cancer called mucoepidermoid carcinoma. I have since undergone radiation, and hopefully have a fairly good prognosis. I am 39, and at any age, cancer is a shock. Take it from me, don't wait, no matter how reassuring testing appears to be.

      Delete
  16. We also provide the best treatment of post surgical scars so just visit our site and get the special discount visit on… post surgical scars in Abu Dhabi

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  17. Hi, Tomorrow will be one week since my surgery, I will be going in to get my sutures out. Worst part for me has been jaw pain when opening my mouth, I haven't seen anyone else mentioning it. Is it not mentioned because it's expected ? I just thought it would be getting easier to eat by now but it's barely improving.

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  19. Hi, Tomorrow will be one week since my surgery, I will be going in to get my sutures out. Worst part for me has been jaw pain when opening my mouth, I haven't seen anyone else mentioning it. Is it not mentioned because it's expected ? I just thought it would be getting easier to eat by now but it's barely improving.

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    1. Hi Lina,

      I apologize for the delayed response. By now I hope you have been able to open and close your jaw with no problem. The swelling in such a tight area as your neck/cheek makes everything in your facial area to hurt. It took a few weeks for swelling to go down for me, and months for the nerve tingling to go away (up to about 2-3 years). Please stay positive, healing is a long process, but our bodies are quite amazing at how well they can regenerate damaged nerves, muscles and skin.

      Prayers for a full recovery.

      xoxox,
      Kym

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  20. I am 3 days post-op. I have stitches from the top of my left ear down past my neckline. My tumor was 2 cm. My question is will my face regain feeling. I know right now it's swollen and I still have a drain- comes out Monday, but I pray feeling will come back, esp. In my face.

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    1. Hi Cheryl,

      When you wrote, you were 3 days post surgery. By now I am hoping you have been healing quite well and the swelling has subsided. I had a similar type incision, although mine went just gown to about 3 inches below my ear. There was definitely swelling, and it took a little while (weeks) for that to go down, and then months for the nerve to start regenerating. It took a few years for that to completely regrow, and now (5.5 years out), I don't even think about it because I never have tingling in that area!

      Prayers for a speedy and healthy recovery.

      xoxox,
      Kym

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  21. Hello! I was so happy to have stumbled upon this blog and reading your experience has really helped me. I am 8 days post-op now and had my drain and stitches removed yesterday. I was wondering if you used anything daily on your incision? I have read everything from burn ointment to vitamin e oil to lavender oil and the doc just said put some Vaseline on it.
    Thanks!

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    Replies
    1. Hi Rosie,
      I apologize my response is lagged. I did not use anything special on my incision. The doctor said just to let it be and it would heal fine, and it did. I never used Neosporin (he said specifically NOT TO), nor did I use vaseline.

      Hope by now you are healing quite well and continue until fully healed.

      xoxox,
      Kym

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  22. Hi Kym, and everyone! I'm now 9 months post op and have to say that I'm doing ok. I'm due to have an MRI in April to check there isn't a re growth as the surgeon said there are still nodes present in the surrounding tissue so slight concern but apart from that the surgery went fine.
    Post surgery I had numbness, bruising, and a squelchy sensation in my jaw when chewing but that all recovered well. I had terrible earwax in one ear for a week, and numbness for quite a while.
    I still get itchiness in the scar and the area can feel sensitive in the cold (I cycle so keep my ear warm wearing a head band).
    I too left my lump too long and would say to anyone don't be afraid and get it checked out. I was terrified too and thought of all worse case scenarios but I'm so glad the lump has been removed and if there's a re growth and I need a follow up operation then I know what to expect.
    I used to worry about my lump every day but now I'm just proud of myself for taking action and getting it removed and the worry has lifted as I know what it is

    But thank you Kym for setting up this blog, it helped me so much before my operation because people didn't understand how terrifying it is.

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    1. Thank you for sharing your story, I'm so happy to hear mine helped you through the process. I remember the itchy feeling that I used to get on my ear near the incision, it would drive me crazy, but over time the nerves healed and it doesn't bother me anymore.

      Prayers for a clear MRI in April!

      xoxox,
      Kym

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  23. Hi Kym,

    I had my surgery over a year ago but I found your blog a great resource to get through the tough times. I had no feeling or movement on the right side of my face for 5 months after the surgery. Thankfully this has not all been restored a year and a half later. Again thank you for writing this blog!

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    1. Hi Michael - wow, I'm so happy to hear you have fully recovered from your surgery. Scary for five months to not have feeling or movement on the right side of your face, but thank goodness over time it healed. It's crazy how long nerves and muscles can take to recover, but thankfully they almost always do!

      Thank you for sharing your positive news to others who may be going through this. There's always hope, never, never give up!

      xoxox,
      Kym

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  24. Hi Kym,

    Thanks for sharing your story! I had my surgery about 4 months ago, and stumbled upon your blog while looking for answers to why I'm having random shooting pain/ hypersensitivity in my ear. From the comments, it appears, as I suspected, to be the nerve healing.

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    Replies
    1. Hi - yes, the nerve heals at a very slow rate, and as it grows back/heals, it will send shooting messages that could make your ear tingle, your cheek jump, your neck tighten, etc. It was very awkward at first, but after a while I sort of just got used to the goofy feeling of it randomly kicking in. Hopefully by now you are healing much better!

      xoxox,
      Kym

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  25. Hi everyone
    I was so thrilled to find this blog & share my experience. I am 6 days post paroidectomy. I still have swelling, numbness & some pain. My biggest concern is pain when eating any foods soft or not. Has anyone experienced this? Does anyone know if this is a concern or normal?
    Any information would be greatly appreciated & good luck to everyone going through this recovery. I am praying for all of you

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    Replies
    1. Hi Jersey Girl - how is your healing going now? It was definitely normal to have pain when eating foods, your jaw just underwent pretty major surgery to have the parotid gland removed. I don't think it lasted too long for my jaw to start to feel better (I'd have to look back on here), but I do remember feeling leaps and bounds better within a few weeks. The first two weeks were killer, and I struggled very much at that time.

      Prayers for a full recovery.

      xoxox,
      Kym

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  26. Hello!

    I just had my superficial left parotid gland removed yesterday 2/14/17. Due to multiple stones. No sutures used, they used a bonding glue. Drain came out today and I was discharged. Swollen and painful but it's because the surgeon used a muscle flap from my neck to fill the indentation. Lower ear is totally numb as is some the cheek directly in front of the ear. Facial nerves seem okay. A little tingly but all was expected. Sensitive hearing on that side like everything is super loud. But all in all I'm so happy it's over!

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    1. Did the drain removal hurt?

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    2. Hi Michael - so glad to hear your surgery went smooth! Hoping now, 6 weeks later, that you are healing well and hearing is coming back to normal. Prayers for a full recovery, just remember it's normal for it to take some time for nerves to heal.

      xoxox,
      Kym

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  27. I had my surgery last week on Feb. 14. on the right side. Stayed in hospital 1 night. Drain was removed Feb. 15, the day I went home.
    Today is post-op day #11. I had severe pain when chewing the first week, so I resorted to eating soft foods like scrambled eggs, oatmeal, and mashed
    potatoes. Even with soft foods, I chewed on the non-surgical side only. The pain when chewing is gone now, but I still chew harder foods cautiously.
    I also drank smoothies for a while that first week before easing back into soft foods. Then I progressed to harder bulkier ones. I ate almonds last night, which I chewed very slowly
    and didn't have a problem.
    I still have the numbness of my ear and it protrudes. My ear lobe is really numb and I have some soreness of the jaw area below my ear. My incision is healing well. Most of my discomfort is from occasional sharp pain in my ear and the feeling of a large object on the side of my face (the numb ear). The numbness is annoying and affects the right side of my head just above my ear too. But doctor said numbness can last up to a year, but expects "expects the circle of numbness to get smaller with time."
    I'm grateful that it was benign. This blog is helpful.

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    1. Did the drain removal hurt?

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    2. My drain was removed the day after surgery. I thought it would hurt being removed but surprisingly it didn't. It was taken out quickly.
      Also, my stiches were removed a week later (3 days ago). I expected it would be painful. It wasn't because of the numbness. I also had Neosporin ointment on my incision ( the doctor said I had enough on to make me slide 10 yards). I was afraid for the removal of both at first, but I decided that the best thing to do was relax, take deep breaths, try not yo be tense and anxious. I believe that this mindset helped too.

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    3. I have same symptoms with my ear - that feeling of a large object is so uncomfortable especially at night :(

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  28. I just recently had this surgery also. I go in Monday to have drain removed and stitches removed. Im so scared and anxious about it. If you had a drain, how long did you have it in and did it hurt being removed? If you had staples did they hurto being removed?

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    1. I have staples not stitches(oops)

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    2. I also had this surgery. There was absolutely no pain when they removed drain. I had stitches that were removed with no pain. Just remember the hardest part is behind you & it will get easier & better. Be patient for only time will allow this.
      I speak from experience & noticed a big difference after 2nd week post op.

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    3. Jersey Girl, how long was your drain in? Did you have any numbness? If so, do you still have any? How did the surgery affect your ear?

      Delete
    4. Hi
      My drain was in until day after surgery but don't panic if yours in in longer for it's really a matter of drainage. All drainage is normal but it varies as to how long it is before it slows enough to remove drain. It's ideal not to remove drain until ready. Yes I have numbness & continue to have numbness but I have felt it decrease a bit since my surgery 3 weeks ago. I'm told numbness can be present for quite some time. I feel it has effected my ear in the sense of feeling like there is fluid in there & it feeling congested..
      That's the best way for me to describe it. Feeling is improving. It will get easier hang in there:)

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    5. Thank you Jersey Girl. I've been experiencing the same feelings in my ear. My ear lobe tingles at times too.

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    6. My ear tingles at times as well. Time will make it much better for us. I am keeping you in my prayers & wishing you well

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    7. Thank you Jersey Girl for your prayers and well wishes. I'll do the same for you and others too. It's a blessing that Kym started this blog. It's helping me to see the commonality of our experiences
      and that what I'm experiencing so far seems to be within the norms.

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    8. Hello both of you - I'm so glad to hear you are both healing well from your surgeries. I did not have a drain put in, but I think each surgery is a little different. As time goes on I definitely felt the tingling in my ear lobes, and wind blowing against it would be the slightest thing that could start the pain tingling again. It took a while (maybe 2-3 years, I can't remember off the top of my head) for my ear lobe to go back to normal. At this point (5.5 years since my surgery), I can't feel a difference in either ear lobe - I'm squeezing them now and they feel exactly the same. So the nerves DO grow back, they just take time.

      Prayers to you both as you continue the healing process.

      xoxox,
      Kym

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    9. Kym, how long is it before the ear lobe numbness stops? I had surgery 23 days ago and my ear is numb and the lump just in from of ear tingles and irritates terribly.

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    10. P.s. Skin feels dry and sore around scar too.

      Delete
  29. I cannot thank you enough Kym for this blog. Tumbled on it few months back and it kept me going throughout and it still does. I had my right side parotid tumor removed 3 1/2 weeks back. My facial nerves were saved , thanks to the doctors who operated on it. I had numbness in ear and lot of heaviness on the right side of head.The first week mostly went ok with the help of painkillers except for the heaviness in right side head and some intermittent pain in right side temple and head( I was happy about the facial nerves being saved and didn't bother much about rest ) After 10 days got off pain killers and around same time the pain in head and temple region started to bother and worry me. I was on soft to semi soft foods through out and was only chewing on left side. I tried not to chew on left side and felt it helped to keep pain under check. By the beginning of fourth week , I am experiencing tingling in ear, sensitive ness/ shooting pain to spicy and sour foods (that's like everyday food for me)and more importantly chewing is not helping as I feel some sort of sensitivity in teeth on upper right side. I didn't have any sensitiveness before surgery as I did get them check just days prior to surgery. I tend to switch to my right side in deep sleep and wondering if that along with left side chewing resulted in this. Thanks again to kym and all the wonderful people who constantly share their experiences here.

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  31. I was first diagnosed with this stupid benign tumor in July 2016; my surgery was originally for early November but had to be re-scheduled because my surgeon had a cancer patient whose surgery was more pressing. Because of upcoming holidays and two grandbabies coming in February, I chose to delay the surgery which will now be April 10. While I am very nervous, I will be very glad to have this behind me. I am so thrilled to have found this blog because it has answered a lot of questions I didn't even know I had! I have learned a lot and feel a bit calmer about the procedure. I will continue posting but don't have time right now. Thanks for everyone's sharing!

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  32. Hi Kym
    I am one week post op and every time I chew anything, even soft food I have severe jaw and ear pain that does not pass for several hours. Did you experience any of that, or perhaps any of the readers?
    Thanks for all your info!
    Laurie

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  33. My surgery was two days ago. So very glad to have it behind me. I am starting to feel a little better but am surprised how much everything hurts. I know I will start feeling better probably tomorrow. Doc was very pleased with the surgery. Onward and upward now!!

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  34. Can someone comment on whether they still have occastional secretions down the road post op. Sarah Wayne

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  35. Hi, I had my left parotid removed yesterday. I'm so relieved my facial nerve is in tact, got a sore throat and a cough but no pain. I am worried about the swelling. I didn't have a drain put in. I am in England and they sent me home the same day (no beds). Did anyone else have massive swelling day 2? I am numb from the top of my ear to half way down my neck. I found it incredibly reassuring to hear the numbness goes away eventually.

    Lynn
    UK

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    1. I had parotid surgery 23 days ago and my ear lob and in from to four ear totally numb. Doctor said they had to sacrifice a nerve to get tumour out so it will be permanently numb. It feels awful especially at night.

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  36. Hi Lynn, I have removal of my parotid 4 weeks ago tomorrow and i was swollen right away even with a drain tube. I am still quite swollen but from what I understand it is all normal. Just watch for redness and if your neck gets hot to the touch. Apply bags of frozen peas to the area on for 20 minutes as often as you can - 5-6 times per day. And try to not worry. I am sure it will be fine but watch for redness and heat. Good luck!

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    1. Thank you Victoria - you reassured me. I am no longer worried about the swelling - good luck to you too

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  37. And I am still quite numb but last week I started feeling some little zaps and am starting to get feeling in little areas. I have heard it could take up to 9 mths for all feeling to return. Every day it feels a little better.

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    1. Hi, I was wondering if anyone could help. It's coming up to four weeks post surgery and I still have quite a bit of swelling. My tumour was large. 5.4 by 4.6 so the surgeon himself said it was like I've been beaten up on the inside. Feels like a hard boiled egg has been lodged in my jaw. Has anyone else had this? There's also tightness around my jaw and neck, is this normal?

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  38. I first noticed a small lump under my right ear in November. I went to my doctor and he said it was probably a lymph node and not to worry. I went back to my doctor when the lump was still there 2 months later. He sent me to have a biopsy which was benign. That 2 day wait to find out the results was the worst. The ENT I was referred to recommended surgery as he said that most of these tumors tend to grow with time and also that the bigger they get, the higher the chance it may turn cancerous. I had my surgery 3 weeks ago. Luckily my parotid was fairly small and on the surface so he was able to keep most of my salivary gland in place which he said would decrease my chances of having a permanent numb ear lobe. The surgery took about 3 hours and I was out of the hospital a couple of hours after that. No nerve damage due to probes placed before surgery. The first 2 days after the surgery was the worst. Lots of pain and swelling. I did not have a drain and came back the next day to remove the stitches (not painful). After the 2nd day, the pain and swelling got better. Not being able to shower and wash my hair was annoying but not being able to sleep normally and with your head highly elevated was the worst. I was not able to sleep well until about 4 or 5 days after the surgery. 3 weeks post-op and I feel pretty good. I still have a little swelling but very little pain. My ear is still numb half way down and to the lobe. The most annoying feeling is the zinging that is going on my ear lobe which I know are the nerves coming back but it feels like a little hair keeps tickling me there so makes it really difficult to sleep. But thankfully this feeling is slowly going away. The scar, at least to me, is still very noticeable. But my doctor said that it should heal very well and will be hardly noticeable in about a year. We’ll see…. The doctor said that my ear lobe may stay numb for a while or perhaps forever (no way to predict). He also said some people sweat right along the jaw line where the surgery was whenever they eat something that causes the saliva to secrete. Not everyone has this reaction but some do. So something to look forward to :-) All in all, the procedure was very straightforward and the recovery very smooth.

    Thanks Kym for this blog! I was so scared about the surgery but then I found your blog and it made me feel so much better. Initially all I found on the web were horror stories so finding your blog was such a relief.

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    1. I have same post op symptoms. 23 days since op and lobe numb and feels weird!

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    2. Hi Eve
      I hope that writing to you regarding my experience can help you and give you a piece of mind. I am 6 months post op from parotidectomy. I still have some numbness and tingling.. Please know that I felt the same way you do at 3 weeks out. Be patient for only time will show you improvement. It gets easier and better.
      Keeping you in my prayers for a speedy recovery :)

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  39. My fiance had left parotidectomy in april it was benign but the problem is there is no feeling in his left side of the face.. bulging eye..droopy lips...we are so worried.. hope he will get his feelings back.

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    1. How is your fiance getting on please? I had mine 4 weeks ago and still no movement yet apart from eyelid moving a little bit but only closes when I go to sleep. No d regards mark

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    2. Hey...how r doing now...well my fiance is my husband now☺️. We got married in dec....He is doing well but still his smile is not like before even his eyebrows doentdo move properly...But we are happy that it didntd co.e back.

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  40. 4 weeks post op. Worst thing is that my mouth is very dry. It makes eating difficult. And dry food impossible to swallow. Must sip water with food. Hoping it will get better. If not just got to live with it.

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  41. Hi 8 weeks post op and bit concerned as the numbness had nearly gone ( apart from ear) but the last few days the numbness is back as bad as weeks3/4 in my neck and face. Is that normal ? My parotid was originally diagnosed as Warthins Parotid Tumour and benign but after surgery they told me it was acinic cell carcinoma and needed radiotherapy. Now they have found another tumour next to the one they removed so now on a watch and wait to see if it grows and then another operation...... really scared as I know how quick the other one grew and this new one I can't see but I can feel the numbness getting worse every day ......

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  42. Hello- thank you for your blog. I've had a lump for a few years and finally mentioned to my doctor who sent me to a dermatologist. The results came back today and it is a plemomorphic adenoma of the parotid...no idea what that was until I started Googling tonight and then happened upon your blog. The dermatologist is sending me to an ENT and have no idea what to expect of this. So I found this blog very helpful in understanding some of the things that could come up if I decide to proceed with having this removed.

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  43. Hi, I just had my surgery today and wanted to thank you for your blog. It made things a lot less scary going into it.
    Jim

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  44. Hi, my brother just had a CT scan today and received unexpected news. He has a 4cm golf ball size mass in his parotid gland, the weird thing is, is that both his lymph nodes we're swollen behind both ears last two months so they put him on antibiotics, but they did nothing. Anyways he started feeling the lymph node behind the left ear get bigger and knew something was up. He had no idea he had a mass that size, you can't tell by looking at him that it's there so to be that big is crazy to me. I was just seeing if anyone can give me a good idea on what he will be faced with. My family might be over reacting as we just had our father pass away from thyroid cancer not to long ago. I want to ease his concerns, but don't want to give him false hope. What will he be facing if he has to have his parotid gland removed. Sounds like thats standard procedure for these things regardless if it benign, or malignant or even an access. They just remove the whole damn thing. It's got him terrified. Can someone who has been through this surgery tell me all about it. Thank you so much!! God bless

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  45. Hi there, great coming across this blog. I had a pleomorphic adenoma tumour removed almost a month ago now. Mine was quite large (5.3cm x 4.6cm) according to my surgeon who is fairly renowned in his field. He has been doing these types of surgeries for 30 years plus and I was in his top 10 of complex cases. Not something you want to hear right off the bat. A little background, my tumour went undetected for 10 years. After numerous visits to the doctor and mis diagnosis mine was actually picked up at the dentists can you believe! I was initially told by my GP it was swollen glands probably due to allergies. Allergies which were never ever found after countless blood tests. Anyways, the dentist carried out an x ray and spotted a shadow, he said it's probably just saliva stones and being responsible he referred me to hospital. It was a hard lump just below my ear, above my jaw but over time it had started to get tender to the touch so to finally have it picked up on was amazing as I knew I wasn't just imaging it! I noticed my left cheek was always a little bit puffier than the right and was always very apparent in photos but again I just put it down to allergies! The doctors always right!? My initial surgeon was awful. Put the fear of god into me and said I would probably end up with facial paralysis, basically gave me the worst case scenario. I sensed off the bat he was trying to put me in my place. He even said to me, you know if you get facial paralysis people will treat you differently. I have to prepare you for that and I'm not just saying this because you're young and a pretty girl. I couldn't believe it. Like I've just been told I have a tumour, the least of my worries is how I will look. I was more concerned about my functions working properly. Being able to blink and eat. The potential to lose hearing in that side. Also how does he know how people treat me!? I was determined to not get treated by him. I was a mess. It was all a blur..

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  46. Cont...When I finally gathered myself I found an excellent surgeon by doing research. I knew this thing had to come out. The location and size was already causing me to have symptoms and I was told that it would eventually disfigure me or lead to paralysis anyway. So I went through with the operation. I am delighted to say I have no facial paralysis. In your face first surgeon who tried to scare me! I was so relieved and so lucky considering how large mine was! Recovery has been tough. I was in a lot of pain the first few weeks. But again the size of mine meant there was a lot of scraping involved, in the words of my surgeon. Which meant for me a lot of bruising and swelling. He also took a fair amount of tissue out surrounding the tumour which I believe is standard practice. Oh also I should have mentioned the fna showed my tumour to be benign, which was good news. I was still a little bit concerned as my surgeon did say he wanted to do pathology on the tumour once removed to be certain as the shape was like a bunch of grapes he called it! It all came back fine. I had my stitches removed 2 weeks ago and the scar is healing up really well. My question is it's coming up to a month this Monday post surgery and I'm still rather swollen? Has anyone else experienced this? Is it normal? My ear feels like it has swelling behind it and is very blocked. The swelling is around my jaw mainly, seems to be mainly internal. Just feels very tight and hard. Like I have a hard boiled egg lodged in there. Has anyone else experienced this? Can anyone give any advice. My irrational side is will I be left with this feeling!? Also my last question is on the numbness. I know the ear and towards the scar are the longest to recover. But my cheek is completely numb. How long did that take to lessen? I hate the feel of it. I can't clean or cream my face as it's still bruised and tender after the surgery, so it hurts to press on it. Again I'm putting this down to the swelling underneath! Also the feel of a scarf or my top sliding past my cheek, neck or ear send shivers down my spine. I still struggle with washing my hair. I just don't like the sensation of it and am struggling to get used to it. Probably doesn't help that it's still bruised and swollen so could be making matters worse for me!

    One last thing I totally agree with the mobile phone comment as a possible cause. When I asked my surgeon what caused these he just shrugged his shoulders and said there don't know. I immediately thought my phone. I always put my phone to my left ear, always have. I remember as a teenager, when I would talk to friends from college for hours and hours the burning feeling I would get in my ear after hanging up! I remember it just not feeling right. Ever since my diagnosis I too now put my phone on loud speaker. I have a follow up appointment in 2 weeks just to make sure there are no cells left over. Fingers crossed all is clear. It's been a really tough and scary last few months. It's so comforting to know I'm not alone in this and that there are many others going though it. It's not something that I could find a huge amount online to be honest especially in the UK. Mainly horror stories or tumours that were a lot smaller or easier than mine. Just know to always follow your gut with these things, listen to your body. If your doctor fobs you off, persist. Always get a second opinion. Seek out the best possible surgeon that you can. But honestly with the size and location of mine, I was basically written off as a lost cause, if I can come through it then you all can. Please stay strong and it will all work out in the end x

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    1. Hi there I live in the uk and later this month i am having a benign tumour removed from my parotid gland (its right on the tail lobe ) I am terrified but your experience gives me some hope Has the area improved sleeping ok? Would love to know how you are now x As you said little or no help here in uk as its so unusual

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  47. Hello I had a parotidectomy 2 weeks ago on my right side . The tumor was roughly 2.5 cm x 2.5 cm. Everything came back from Pathology Benign. Very rough waiting for the news fro the biopsy and the surgery itself. I am experiencing quite a bit of leaking out of the incision under the ear lobe . It is worse when I eat . But it happens multiple times a day. I’m wondering if anyone else had this symptom post op ? And how long it might last . My ear is also completely numb but I can deal with that. I’m just worried this leaking is a bigger problem ?! I’m on antibiotics for 2 more days . The liquid that leaks out of my face is not super watery kind of pussy or creamy . I just want this all to be over .

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  48. Hi, I have to first say I’m incredibly happy to hear your tumor is benign! As for the leaking, I did not experience it. What does your surgeon have to say about it? Are the stitches still in? I’d definitely recommend getting back in to see the surgeon, as you don’t want to risk an infection in your incision. Hope it is resolved quickly, and your nerves continue to regrow over time.... it took a while but my ear has complete feeling now (guess I should’ve gotten my ears pierced when I didn’t have feeling there!)

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  49. Hi Kim...thanks so much for hosting this fabulous blog. I looked everywhere for something like this. I had superficial parotid surgery on March 7, 2018. Almost everything is going well except for 2 things. My left eye drops and every once in a while it tears. The other thing is I have been sleeping in a recliner. Last night I tried the bed and it was a disaster. It was so uncomfortable that I wound up back in the chair. Anyone else have those issues?

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  50. Hi everyone,
    it is great to have a blog like this helping through doubts and bad times. I had my surgery six months ago in the Uk. Things are a lot better with my facial nerve ectera and I eat ok, though food tend to pile up at the right corner of my mouth. My adenoma was in the right parotid gland. One thing I wanted to ask: some days I feel really well and almost normal on both side of my face. some other days (like today) I still feel numb in the rights side and awkward in my jaw. can anybody relate to this and have some tips?
    Thanks

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  51. I am facing this surgery in the near future and I read all the comments on this blog but no one said they had reconstruction at the time of the tumor removal. Would appreciate any comments.

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  52. Hello, so I've just found out what I have and I've taken in all the details, listened to the experts, asked the relevant questions and even considered how I'm going to deal with the recuperation etc. But the thing that's bugging me is if it were any operation I just can't emotional deal with the idea of having surgery done. It's what stopped me doing something til now about my gland so now I'm waiting for the date to be announced I'm signed up to it and I feel incredibly anxious and have that fear or flight complex conversation in my head.. I have to do it, bit has any o e got any words of wisdom or tips on how to get my nervous ass to to hospital without havi g a heart attack before the y extract my left parotid gland.. Thanks.

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