Status
Not open for further replies.

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,743
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
today i had my oral specialist appointment,its been a long day.
my appointment was made for the hospital in the next city,we set off at 11.30am and it took over an hour to get there,had lunch and made our way to the hospital.
got there for 2.45 (appointment was for 3.30pm) but got in to see the doctor early which was good because i had alot of test done and we did not get out till nearly 5pm.

ok, i was told i could have been seen at my local hospital as they do have a oral specialist unit there ,they are going to send the test results ect to my local hospital for treatment.

basically they say the problems are due to hyperactivity of the jaw and spasms.
at my next appointment at my local hospital they are going to fit me with some kind of jaw brace/splint and also fit me with a mouth guard on a night to stop my teeth clashing if i have spasms.
will also be seen in the myofacial clinic about the hemifacial spasms.
all good news but i did get some unexpected bad news................... they found a cyst.
my scans of my jaw showed i have a upper jaw cyst which is quite large and has been growing for some years though i dont have any symptoms,they said i need surgery as it will just keep growing and it can even break the jaw..........i asked if it could be that thats causing the hemifacial spasms but they said no.......wrong nerves so unrelated.

good job i had this appointment otherwise they would not have found the cyst but for me surgery is not good as i dont do too well after.
now at least i am getting help with the lower jaw though i know now it is umn and they can only help not cure.
so a mixture of good and bad news.
i am sooo tired ,stiff and in pain and in my pj's at 7.30pm.
 
Caroline, so sorry to hear that you have to have surgery. But I am greatful that it was found before it became a huge problem! I do hope all the things they are putting into place for you will help relieve some of the symtoms your having. I know jaw spasms are painful. I get them occasionally, mainly under the chin. Very painful when they cramp.

Let us know before you go in for surgery so I can say prayers for you.
 
Dang Olly. Im super sorry for all this trouble you are having. Like Joyce said, Im glad they found it now before it got any worse.
May I ask- what sort of troubles do you have after surgeries?
Best of luck to you. Rest up.
 
Best wishes, Olly! Hope things move along quickly and that you're home again without complications.
 
First, I want to tell you how sorry I am and will pray for your speedy recovery and that the drs hands be guided by GOD.

On a side note, have you ever had any gene testing done? The reason I ask is that you have hemi-facial spasms and my sister suffers from that also. My gene testing came back with a flaw on a gene, one that the lab has never seen before. They wanted my children and my 2 sisters and parents to be tested. Well it's $2500.00 each and insurance doesn't cover it. I can't remember if you have mentioned siblings in the past, but at this point I am probably going to get sisters tested. Let me know when surgery is scheduled, us, your family, can have a prayer chain.

Sending you prayers,

Kimberly
 
thankyou joyce and everyone else for your well wishes but it will be a couple of months before i have surgery,
my test results and records need to be sent back to my hospital,they will send an appointment for me to have a quick chat about the surgery and then they will set a date for surgery.
my other stuff will be a seperate appointment i think.
i will let you know how things progress and when my surgery is.

liz........i have hypotention and prone to syncopes and some drugs ect can make it really bad,for instance ammitriptyline which i came off but now they put me back on them.
so when i have surgery it takes me 3-4 times the ammount of time to come round then others because i become hypotensive.
plus now with pls it just makes me plain ill and symptoms are worse for weeks after.

kim.......i thought you were my friend!.........i did not even look at the video as it would give me nightmares lol.

kimberely.....i had genetic testing done but i think it was just a general one.
my sister is ok,no neurological problems but i did have a brother who died as an infant/toddler back in 1970.
he could not feed,was floppy and never thrived but they never found out what was wrong with him.
 
Hi Caroline
So sorry you have had further problems. Just hope you you get through it all well and bounce back quicker than ever. xx Hugs Ang
 
there we go ollie...u is in the right hands.....i got a jaw prob..very hyperactive..not mine, my missuses.....and its always in my earhole........women.....av a good weekend...loves the pooler..
 
Caroline, you are correct not to watch the video I posted. I watched it and it scared me half to death. I still can't get the image of that fella's jaw wired shut and man! Did he look like he was in pain or what! Poor guy.

Not much to look forward to, is it Caroline?:mrgreen:
 
Having a cyst removed from your jaw probably would not require having your jaw wired shut, as they won't be trying to realign your jaw. Having had that done over 30 years ago (really, am I that old?!) as part of orthodontic work, I had my jaw wired shut for 6 weeks. It's nice to know they do it a bit different now. Anyway, the whole procedure was uncomfortable, but not nearly as bad as I thought it would be. Your procedure will be much different than mine, but I hope your recovery is smooth.
 
HOLD ON A MINUTE! JAW WIRED SHUT! I HOPE NOT!.
The oral specialist i saw said a radiographer needs to look at the images because they can not determine the size,it is big and they can see an outline but i think they don't know the depth and how far back into the jaw it goes.
i am laying eggs about being put to sleep and just what this surgery will entail.

akjo, the brace/splint has nothing to do with surgery but to help with my hyperactive jaw i think ..........chewing is tiring and my jaw can get painfull and stiff especially round tmj,boney bit at the bottom of jaw and around the chin........just everywhere when i think of it.
looked up brace/splint and i am thinking its just a jaw strap support and also they said i could have a mouth guard for on a night but not sure about that as it was only this time that i had jaw spasms in the night that smashed my teeth together........had them during the day before....jaw slamming shut.

kim, i could never watch that film with dustin hoffman in were he see's the mad dentist...........whats that film called? just love dustin hoffman..........midnight cowboy always makes me cry at the end.
 
Oh dear, didn't mean to get you upset! I only mentioned the jaw being wired shut because that is what the video was about. Sorry for the confusion - I could have gone all day without stirring that pot. Anyway, I hope they can provide some relief for you.
 
akjo,its ok ..........just a little mix up.......i hope!

just to clarify for a few people this cyst wont disapear..........wish it would but it is like a tumour and just keeps growing and growing.
you can not see it or feel it as it is buried deep in the soft tissue and i dont have any pain.
 
Status
Not open for further replies.
Back
Top