Jump to content

Recommended Posts

Hi all,

Well ive had my 6 week visit with the surgeon after my craniotomy....all went well.

I asked him when my jaw would be better, it now seems not all people suffer with my issue, I cannot open my mouth wide, I can only put in 2 fingers vertical between teeth. Eating has been an issue but ive got used to it, seems he wants to refer me to a facial somebody or other....anyone else had this problem?

 

Difficulty being that I need a problem fixing with my teeth but the dentise usually says 'open wide' and I cannot!!!!

Other than that im doing ok, just terribly tired after doing anything...still earlyish days...My eyebrow has a little movement now and hopefully will be 'normal' if not then ill be fine to deal with that, got another 3 month visit to look forward to!

 

Also id asked what a circular nobbly bit is on my left side of forehead, as I was a little worried!! Seems its a metal plate and bolt holding my skull in etc....he stated I could have it removed now if any issue with it, anyone else have an irritating one? It feels numb and erm weird, also have a rash of spots down the left side too, ive tried with Oilatum but not leaving and had for weeks - any ideas anyone? My GP surgery never know anything and always refer me to the surgeon argh!

 

Thank you in advance for any help as per usual

:crazy:

Link to comment
Share on other sites

Hi

I cant open my jaw nearly as wide as i could before- in fact just tried your finger test hahahaha- i too can only open 2finger wide. I have to cut food up smaller than before. I was hoping that in time it would just go back to normal. I also have a nobbly bit on my forehead which i just said the other other day i dont think they have put my skull back properly hahaha

I dont have the rash thing.

 

Unfortunately since leaving hospital about 6 wks ago i have not seen or heard from any proffesional, i was just put out hospital.

I think i need to phone and ask to speak to someone because i have lots to ask

Lesley xx

Link to comment
Share on other sites

I am now 1.5 years post op and my jaw is just about normal. I could not eat a homemade turkey burger, now I can. I had a little set back as I had a temporary dental crown and could not chew on one side. That is fixed and the jaw issues are gone. I also had clicking and crunching for awhile but that is gone as well. You can't rush things, the healing process takes time.

Link to comment
Share on other sites

Doodles, It is still so early for you but others may want to know this ( or not).

Is this like or similar to TMJ thing? (Doodles not you) I had an episode about a month ago. Right side started clicking, I had a dentist appointment for cleaning the next week after that I felt like someone punched my left side and I could not open my mouth very far for a week, my lymph node swelled and after about 10 days it went away but now I can tell it is right there again.

 

I sometimes get the clicking etc and I do some jaw exercises gently & relaxing of my face. I have Oral Lichen Planus so it may be a nerve thing?, fibro, CFS or SAH thing that causes mine.

 

I get massages ( had to wait 3 months after SAH and dissection I did not allow her to touch my neck for about a year) and if I recall correctly she worked on my alignment of my jaw. I had gone to my GP and he said to take my muscle relaxers and pain meds for it. It seemed to help not that I am offering advice to do that. But when I need to go back to dentist and I will take a muscle relaxer and pain pill before I go now- lucky me it is only 6 houses away so I can walk like a fool instead of drive.

 

I do try to relax my jaw by gently pushing the bottom out past my top one when I find I am clenching or stress is there. Is this an issue you can ask a dentist about? Which is what my GP asked “Did you tell the dentist you had the clicking when you got there?” Of course not I just “grin and bear it”.

 

Also I know in one of my yoga classes and I am sure on UTUBE you can Google a facial relaxation video……but in one class a teacher talked us through relaxing the muscles in our face so nicely.

 

Of course you need to ask your doctors if any of this is ok but this is what I had to do to unlock & relax my jaw. I can tell if I do not continue to pay attention to it I will be in the same boat again.

MaryB

Link to comment
Share on other sites

Symptoms specific to surgery (clipping)

Discomfort in jaw...

The following site/page link may be of help to you. You will have to scroll down near to the bottom of the page. http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/RecoveryAdvice.aspx

Just to add re:rash - are you on any meds that could be causing a side effect? Just a thought.

Link to comment
Share on other sites

Thank you all for your kind replies.

 

My surgeon offered a referal last week as says at this stage 6 weeks not everyone after clipping has this issue.

I had issues eating at first but you just get on with it....now I cannot open my mouth wide...so cannot go to dentist and I need a crown doing again....so i have called today to say I will now take up the referal tothe facial person who will help {seemingly putting lollypops in my mouth etc...sounds wierd but that is what I have been told. I had asked the surgeon you see about how long it would be till it was 'normal' again, which is when he had said not all suffer ongoing...

 

Ill await an app now and see, silly me thought I would be able to do something at home!! I will have a look at utube though, from having my home locks changed recently I was told you can see how to break into a house on utube....SCARY STUFF!!

I know its early days but after having SAH 14 months ago I am stupidly eager to be again 'normalish' lol.

Thanks again {I have checked link and I knew about the cutting of the muscle etc thanks}

:-D

Link to comment
Share on other sites

ooops..

Karen - Im not on any medications now other than my thyroxine, I dont ever use anything new on my skin etc so its really annoying as it wont go away and seems to be travelling down my face - back to docs for me, I hate going!!

Link to comment
Share on other sites

Hi doodles

Thought it might be helpful I've just spent 2 days in hospital with face pain and swelling

Following craniotomy 7 weeks ago, I've been Checked out and CT scanned and everything is

Fine and related to the muscle which was cut/damaged During surgery it will eventually heal in time, no exact time

Given though!!!!

 

So I'm off home and going to manage the pain With parectamol.

Hope this helps and gives you some reassurance.

Sarahgx

Link to comment
Share on other sites

  • 2 months later...

Hi all

 

Ive had my appointment today with the Oral person....

 

I can now put 2 and a half fingers in my mouth...he says ive been doing good with stretching my mouth and says its due to bruising/scarring at jaw corner....says with craniotomy that no muscle is cut {im bemused as thought this was the case}

he says that he will discharge me as im doing ok and should be another 3 - 4 months and will be back to normal.....he says when I open my mouth my jaw slips to the left {id not noticed this lol} but all will be fine.

 

I had also mentioned feeling like being under water sometimes and still getting blood coming out of my ears 4 months on...he had looked and says there is a lot of blood but didnt mention more about it and I forgot....

Anybody else had the blood thing? I clean my ears every other day and at least 3 times a week blood is present...

Link to comment
Share on other sites

Sorry Doodles, I have not heard of that blood thing. BUT I read this whole thread again ( thought for the first time until I saw my reply :lol:).

 

Anyway I was just at the doctor GP for a check up and mentioned the electric shock in my face, the pain behind my eyes and the TMJ thing. MY GP thinks I have "trigeminal neuralgia". I had a crown put on Monday and was so prepared with pillows for my back and neck, ice packs for both areas and took a muscle relaxer for good measure. I can walk to dentist. I did not nearly have the pain I had with the cleaning I had a month ago or the TMJ thing.

 

I also had a children bite block in my mouth. But what I wanted to say is that when I had radiographs of my molars the assistant had to hold the card in my mouth as I could not open my mouth wide enough to have her put it in. I had not really noticed that until recently.

 

I did not have coiling or surgery either. PS my glasses are about to drive me bonkers on my head. I wish I could just go without!

Good Luck, Maryb

Link to comment
Share on other sites

Hi Doodles :)

 

I also had a craniotomy, and like you I had bleeding from my ear. It was the right side, where they operated.

At first I just cleaned it everyday. Then I went very deaf and could hear myself as if I was under water. This drove me mad !!!! I went to the Doctor and he said it's all quite normal after surgery to just keep cleaning my ear and not get it wet when washing my hair. This continued for a few more days.

 

Then I had terrible earache :( so painful.....so back to my GP. He gave me antibiotics saying I had an infection.

Took these for 10 days...no improvement !!! I was beside myself.

 

Went back to GP, he then referred me to an Ear Specialist who checked me and said my ear was blocked with blood and gunge deep inside (YUK) from Surgery. I had to have my ear very gently suctioned as could not syringe it due to the pressure to my brain.

 

After this I felt so much more comfortable and the bleeding did stop after a couple of days.

I would get your ears checked out again....maybe get referred to an Ear Specialist.

Hope this helps xx

 

P.S. My Surgeon did cut through the muscles of my jaw and it took ages to get back to normal and open wide enough to eat properly :)

Link to comment
Share on other sites

wow Tina, I do epxerience what you say like feeling of being beneath water! I dont have pain though, but surely if its now been looked at and is full of blood then thats not normal 4 months on!

 

Ill have to book a visit with doctor and ask for something doing as I do not want to wait for an infection etc...I do wash my hair every day really so I use cotton buds every day. As I was left side operated on my ear was covered in blood and took a while to clean after but I wouldnt have thought about the inside until about 2 months ago when a rather large piece of blood came out....and continued with smaller bits every other day.

 

Well im glad you are sorted and thank you kindly for giving me your story, i feel informed now and not 'odd' anymore.

x

Link to comment
Share on other sites

Hi

I had a craniotomy which went from just in front of my right ear up and round to nearly the front middle of my forehead.

This went through through jaw muscles and I had trouble opening my mouth.

 

I'm over a year since and my jaw is now absolutely fine and has been for a quite a while. I can't remember exactly how long it took to get back to normal but it must've been around 3 months.

 

I used to find the fluid under the skin as it healed quite odd. When I chewed a fluid patch onto of my head would pop up with every bite! This has all gone as well now.

 

Hope is starts to feel better soon.

Neil

  • Like 1
Link to comment
Share on other sites

Hi :)

Neil, my scar is in a similar place as yours. I have metal plates and screws in the side of my cheekbone and head. My jaw took longer than 3 months, I still cant open it very wide, which is a nightmare at the dentist as I found out a few months back when I lost a filling :roll: I think it is because they had to remove my cheekbone to be able to get to my ruptured aneurysm at the brain stem to clip it. It is all connected to the jaw bone.

 

I cant remember having fluid patches popping up when eating, but creaked and groinched...was very weird and scary feeling !

Link to comment
Share on other sites

Hi Tina

Ouch, sounds like I got away with it! I might have been lucky with the location.

I had a burr hole, which is a reasonably small hole! They divided my temporalis (chewing muscle) but didn't have to do anything with other bones. The hole was fixed with 2 fixings (craniofix) and they then used acrylic cranioplasty, so no plates or screws.

just in case it helps anyone my operation notes say...

Procedure

temporalis divided

...

Closure

Monocryl 4/0 continuous to dura.

Craniofix x2 to the bone flap with acrylic cranioplasty to defect

Subgaleal drain – on gravity

Vicryl 2/0 to temporalis

Vicryl 2/0 to galea

Clips to skin.

I remember the noises now you mention them. Mine were mainly squelchy, watery noises. I had a lot of fluid as the swelling went down.

  • Like 1
Link to comment
Share on other sites

  • 5 years later...

I too have just had this operation 12 weeks ago and I am suffering from a locked jaw. I have seen a maxillofacial consultant who advised they cut into the jaw muscle and scar tissue causes it to lock, it’s very common. I could only fit one finger in my mouth and after manual manipulation and the lolly sticks I can now do two. 

I spoke to my neurosurgeon who explain about cutting in to the muscle and eventually it will go but I’m tired of eating and my food falling out and having to squash a sandwich to fit in... gone are the days of eating a burger. 

 

The next steps offered is to put me to sleep and they force it open, I am scared of my jaw breaking so I’ve left it for now. All of the muscles in my face hurt when trying to open my jaw l, especially around my nose, yawning is very painful so I’m not keen just yet in it being forced.

 

Good luck with it all, fingers crossed we get it sorted as it’s frustrating when you can see everyone else fitting 3 or 4 fingers in their mouth. Also I found kissing is a struggle grrrrrrr.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...