I had my surgery on Monday. I have a couple of concerns so bare with me, I'm only mentioning them to get ansers for me, not to scare anyone because my symptoms/situation might just be more rare and shouldn't worry people. They said the tumour was large and in 2 parts which the surgeron said was concerning but he then followed it up with "there's still every chance it's still pleomorphic adenoma".. Initial biopsy a year ago showed it was benign but I'm just concerned as it was only 1 part they got a test from. I'll obviously find out within 2 weeks what it comes back as now that the whole thing is out. My practical concern is I think I have Frey's syndrome because my cheek / most of the area of the scar is wet alot / sweaty. Having been told to keep the scar dry I'm just concerned that the frey's syndrome might affect the healing process? I've been out of hospital since Wednesday now. I'm also depserate to wash my hair as I think it's in my mind but it keeps itching, but again too scared to dare to get my scar more wet than it already is from the freys syndrome. I also have some irritation in my ear and I can see there's dried blood in there, it's been 5 days since my surgery and I'm not sure if I should attempt to clear my ear yet as it's so close to the scar and is mostly numb at the moment. Sorry for all these questions but I wasn't really given much factual information before I left hospital on Wednesday, it was mostly just "whatever feel's comfortable for you", and to be honest what would be comfortable for me is somebody telling me what I can factually do haha.

Hi there, OK, first things first, try not to worry about the hair, I didn't wash mine for 2 weeks, so yes filthy & yes very itchy, but your main priority is the healing of the scar. If it's natural moisture around the scar you could just dab it with kitchen roll or toilet paper, something that will absorb, but just don't wipe. I didn't get Freys syndrome until a year after the surgery, but was told I might. With the ear, do you have anyone that can maybe help here - moisten a cotton bud & they can gently wipe (not on scar) around or in the ear, to clear the dried blood perhaps? Also, can't stress enough the importance of the cream on the scar, did they give you some or have you read my earlier messages to get your own? How is your movement at the moment in your face? 

Lastly, stay positive, do gentle facial exercises, I also felt small massage movements on my face helped. 

Hope I've answered everything, shout if not x

Okay great thank you. I had nurses apply a gel to my scar about 2-3 times a day for 2 days whilst I was in hospital, just before getting discharged the surgeron asked me how the gel feels and I said "it feels like eletricity" when they apply it and he said not to bother with it, so I left the hospital with literally nothing. So I should buy some Dermatix? If you think so then I'll do it. I just didn't bother because the surgeon made it seem like it wasn't worth the discomfort. But frankly because of the whole wetness of the area because of this freys syndrome I feel like something like that might actually help right now? I too sleep with 3 pillows but on my right side (as my scar is on my left side), but I'm sleeping around an hour at a time before waking up, I'm usually a good sleeper but can't seem to sleep for long periods as of yet. Ofcourse it's only been 5 days so far though. and okay 2 weeks without washing my hair, I'll make that my target haha. I just get so paranoid that the sweat and everything that's in and around the scar is going to be bad for it, but yeah been told to absolutely avoid it which is hard for me because I'm so stressed about it! sorry for the extensive reply haha, appreciate your advice earlier though.

Try not to stress, as that really won't help your healing process & stress is I think what caused mine. Try meditation, something I never really did before. I'm not medically trained, but was very fortunate to have an amazing surgeon who was very informative too & he suggested this Dermatix. My partner put it on 3 times a day & because of the numbness, I felt like he was pushing at the scar, he wasn't, but the feeling is bizarre. I still have numbness but only around the jaw & ear. I slept sitting up & still had the compression tights on for about 10 days. The sleep will be a bit abnormal anyway due to the GA. Are you in any pain? Mine is left side too. I used to get quite upset sometimes too, it's a lot to go through so try not to be too hard on yourself x

Thanks Jools, I really appreciate you and everything you're saying. I have a little pain but sort of almost like a slight ear ache but where the scar is (if that makes sense haha). In regards to getting quite upset, I do but mainly because I want this to be over now, and I'm just impatient in terms of waiting for the 2 weeks for the results to come back from when they examine the tumour, but that's something I need to not focus on, I know that. I've accepted the risks of the surgery before and the fact that freys syndrome, the scar and the numbeness in my left ear and cheek is the only thing that seems to be apparent so far, I'm quite pleased in that aspect. It's the not knowing until the tests on the tumour are revealed when I get my check up which is playing on my mind, but yeah I know it's not something I can control and need to try and not focus on. But yeah I'll order that Dermatix now! Thank you Jools :happy:

Thanks Jools, I really appreciate you and everything you're saying. I have a little pain but sort of almost like a slight ear ache but where the scar is (if that makes sense haha). In regards to getting quite upset, I do but mainly because I want this to be over now, and I'm just impatient in terms of waiting for the 2 weeks for the results to come back from when they examine the tumour, but that's something I need to not focus on, I know that. I've accepted the risks of the surgery before and the fact that freys syndrome, the scar and the numbeness in my left ear and cheek is the only thing that seems to be apparent so far, I'm quite pleased in that aspect. It's the not knowing until the tests on the tumour are revealed when I get my check up which is playing on my mind, but yeah I know it's not something I can control and need to try and not focus on. But yeah I'll order that Dermatix now! Thank you Jools :happy:

It honestly sounds like you're doing pretty well. I had quite bad drooping of the face on my left side for 3 months, a bit like bells palsy, so mentally that took alot out of me, I was grateful I had to wear a mask when I went back to work - never thought I'd say that though lol!

Would love to know how you get on & I'll be thinking of you as I know the 2 week wait is a little like slow torture, but stay positive. 

Hi, was just wondering how you're getting on?x

Hi, was just wondering how you're getting on?x

Hi Jools. I just wanted to update you and also ask a quick question. Firstly, I got my result back yesterday and it's pleomorphic adenoma with no sign of malignant thankfully. So I'm currently feeling very lucky at the moment. My daily routine is basically back to normal now (I.E Work, showering, etc). I'm 4 weeks since the surgery now and my scars look like they've healed quite well. I currently do have swelling around my scars tho, and when I look at the pictures from weeks ago it looks like the swelling isn't new or getting better. I saw my surgeon today and he told me the swelling should go down over the next few months. I'm just curious if you experienced any sort of swelling 4+ weeks after the surgery? I just got the impression that my surgeon wasn't entirely sure at the time (although he very well could've been and I'm just being overly negative haha). If you did I'd love to know if that went down afterward and if you did anything to help it? Thanks for everything Jools.

Ohhhh I've been wondering how you are & lovely to hear from you. I tried to send a message to you, but it wouldn't work & ended up sending it to myself

The pleomorphic adenoma is exactly what I had & im so pleased for you with the result. On the swelling front, the left side under my ear on my jawline is still bigger & a lot harder than the other side & that's 18 months on. There's a lot of trauma that's happened to the face, so it's quite likely the swelling may still be there. I would monitor it for the next couple of weeks & then go back if still not gone down. How's the movement? X

Oh that's good to know it's at least normal for the swelling. I Always get overly cautious / paranoid with these things haha. My movement generally is fine, it's just  maybe if I turn my head too Far left I certainly feel the swelling more. Generally though my head movement isn't really effected although I can constantly feel the slight heaviness in the swelling. Do you think this sort of thing would be fine to be sorted with Botox or something? Again I'm not overly concerned with it though, it's mostly something only I notice and it's not "that" uncomfortable. I'm also very happy to hear yours was pleomorphic adenoma too! Surgeons were convinced it was something worse due to the size and look of it, so that 4 weeks before finding out the result was long

Hiya RedDragon, I would imagine Botox would be ok & I say that because I still have freys syndrome which is a side effect from the operation & they said I could have botox to help that if it was really bothering me. You're very lucky with the full movement not being affected, I had a slightly droopy left side of face for 3 months & mentally that was quite hard to deal with as I wasn't sure it was going to return to normal, fortunately it did. Any other questions give me a shout, but so glad you're relatively OK. Take care x

Hi Jools. Just checking in after about 4 months since my operation. It still feels a bit like electricity when I touch the left side of my face, near with the scar is, so is quite an effort to shave. Was wondering if you have any problems in terms of an electric feeling on the side of your face / near where you had the operation. It's the only thing that bothers me about it now, so obviously every day I consider myself incredibly fortunate it wasn't worse, but I'm unsure what to do about this feeling, I always find mysef reminding my niece of my scar too because she tries to jump on me and I can't stand the feeling of her grabbing my face/neck. My surgeon told me the tissue is the longest to heal, and to see him again if it's not better in 2 years, but that seems a long way away, and the feeling is difficult, again, particularly when I shave etc. Is this anything like what you've experienced? 

Hi RedDragon

The numbness loss of feeling aound your jaw and ear is permanent. Due to nerves being cut through. However you will notice it less with time as much as you get on with enjoying everyday life.

A few things still irritate me. 5 years on I cannot wear a neck tie and hate anyone including myself touching that area it feels just plain weird. I hate shaving for the same reason although there is little to shave due to radiotherapy. I use an electric razor now as it is easy to cut yourself and not notice.

I had a dry mouth for a few years after the op but this has mostly resolved itself although bread can sometimes be tricky and oven chips, need lots mayo or sauce or vinegar.

I also sweat down the side of my face (Freys syndrome) if I eat very tasty food or even look at lemons. this is due to signal to make saliva not reaching the missing parotid gland and triggering the sweat glands in front of the ear instead.

Anyhow be patient while your body takes time to recover.

Hi RedDragon, lovely to hear from you. I'm 2 years down the line (19.2.21) & I still feel quite odd around the area of the scar. My numbness area got small as time went on, but the odd feeling of when it is touched hasn't really changed, so I would say that what you're feeling is probably quite normal. I am probably over sensitive in my head about it too, but only because I'm paranoid I may damage the area. I would also add that the movement of that side of my face didn't come back until 3/4 months later.

In summary I wouldn't worry & I think you'll find it improving month on month. Hope that helps x