Just a little post to keep you up to speed with my progress!
Last week I had to wear an EEG for the week to monitor my brain activity, I had already had a seizure the week before so it was unlikely that I would have one naturally, so on the Wednesday my mum put a strobe light in the room to induce a seizure. Hopefully these results can provide something to help get sorted, as I hope that by September (the start of 2nd year of university) I will have controlled seizures and maybe they can provide more support regarding the pain I'm in with my jaw!
On Sunday I am going away with the family to Devon so we can relax and try and forget the past few months for a couple of weeks :)
Thursday 13 June 2013
Sunday 14 April 2013
Update: 14th April 2013
Well, not only is the jaw being problematic recently, but my fits have become more regular. So much for 2013 being my year, but I have had to quit work for the time being, and I had to write a letter of complaint to the Walton Centre as they cancelled an appointment that we had been waiting over 10 months for!
Anyway, we have seen my neurologist and we are waiting for a number of appointments, one for the pain clinic has come through which is on Tuesday (fingers crossed they can help!), I need a week long EEG scan, someone to film me having a fit, and maybe a stay in hospital over summer to investigate!
No progress can be made with my jaw until my fits are controlled so I'm just hoping I can get through my exams and then get my fits sorted before year 2 at university!
On a lighter note, I had a fabulous 21st birthday, a little house party with close friends and family and I was truly spoiled! Hopefully be able to write again soon with some positive news :)
Anyway, we have seen my neurologist and we are waiting for a number of appointments, one for the pain clinic has come through which is on Tuesday (fingers crossed they can help!), I need a week long EEG scan, someone to film me having a fit, and maybe a stay in hospital over summer to investigate!
No progress can be made with my jaw until my fits are controlled so I'm just hoping I can get through my exams and then get my fits sorted before year 2 at university!
On a lighter note, I had a fabulous 21st birthday, a little house party with close friends and family and I was truly spoiled! Hopefully be able to write again soon with some positive news :)
Sunday 30 December 2012
End of 2012
It has been a long and painful year, and without much hope of a cure in 2013 I'm not very optimistic.
However, this year has made me stronger as a person and I'd like to thank everyone who has helped in any way possible!
Happy new year and I hope 2013 is an amazing year for all :)
However, this year has made me stronger as a person and I'd like to thank everyone who has helped in any way possible!
Happy new year and I hope 2013 is an amazing year for all :)
Monday 5 November 2012
Back to the consultant .. 5th November 2012!
Today I went back to see my consultant and even though I'm not 100% happy with what has been said, it's progress!
Firstly, I went in and told him how much pain I am in, how I'm struggling to cope with work and uni, and how I have no social life! I told him that I had been looking into other resolutions and that I wanted a TMJ replacement, which he has mentioned that I may need in the future.
He explained that firstly, I am too young for such drastic surgery, as the joint would have to be replaced every 15 to 20 years, and the more something is operated on, the less it functions. I told him that I don't care what my jaw function is like when I'm 80, I just want it to be better now! He went on to explain that even though a jaw joint replacement would help the pain in the joint, it wouldn't resolve the muscle spasms which are pulling the joint out of place. I asked him whether the replacement might minimise pain which would then control the muscle spasms, but this is a question of the unknown.
He went on to give four needles in the jaw joints to minimise the pain and also measure how much I can open my mouth, which at the moment is 10mm without anaesthetic, and 15mm with. When I cried because of the pain of the needles (which isn't normal for me). he realised how severe the pain has got over the past couple of months. The next steps, which are frustrating but practical are:
- Set up a meeting with another consultant for a second opinion to discuss further options or procedures which may help.
- Have an MRI scan to check they haven't missed anything major.
- Set up an appointment with a clinical psychologist to try and help with the pain and frustration of this problem.
- Wait for the results of my liver function test before starting on a new drug which may help to minimise the pain.
I go back to see him again on the 14th November, so for now I will try to keep smiling and if anybody has had similar problems or has any advice then please let me know :)
Firstly, I went in and told him how much pain I am in, how I'm struggling to cope with work and uni, and how I have no social life! I told him that I had been looking into other resolutions and that I wanted a TMJ replacement, which he has mentioned that I may need in the future.
He explained that firstly, I am too young for such drastic surgery, as the joint would have to be replaced every 15 to 20 years, and the more something is operated on, the less it functions. I told him that I don't care what my jaw function is like when I'm 80, I just want it to be better now! He went on to explain that even though a jaw joint replacement would help the pain in the joint, it wouldn't resolve the muscle spasms which are pulling the joint out of place. I asked him whether the replacement might minimise pain which would then control the muscle spasms, but this is a question of the unknown.
He went on to give four needles in the jaw joints to minimise the pain and also measure how much I can open my mouth, which at the moment is 10mm without anaesthetic, and 15mm with. When I cried because of the pain of the needles (which isn't normal for me). he realised how severe the pain has got over the past couple of months. The next steps, which are frustrating but practical are:
- Set up a meeting with another consultant for a second opinion to discuss further options or procedures which may help.
- Have an MRI scan to check they haven't missed anything major.
- Set up an appointment with a clinical psychologist to try and help with the pain and frustration of this problem.
- Wait for the results of my liver function test before starting on a new drug which may help to minimise the pain.
I go back to see him again on the 14th November, so for now I will try to keep smiling and if anybody has had similar problems or has any advice then please let me know :)
Thursday 1 November 2012
Where I'm up to today..
This is only a fraction of the problems I have faced and if I'd of taken a photo everytime I'd been to hospital or had my jaw come out of place there would be no more room on the page!
It is the 1st November 2012 and I am still having lots of problems. My jaw comes out of place very frequently now, approximately 5/6 times a day and I am in chronic pain! I take cocodomol and naproxen regularly and then oramorph when I feel that I can't cope with the pain. I still have to go to A&E every so often (recently it's been once every week or two), and it is the same procedure but with more of a struggle and someone has to hold it in position for a very long time because the muscle spasms are so strong!
I have no quality of life as I go to work and to university which takes most of my strength and the rest of the time is spent with water bottles on my face, lying down to stop myself passing out,being sick or feeling dizzy. I have been researching jaw problems and I believe that the only solution is a jaw joint replacement. I highly doubt my consultant will want this procedure to happen but I am going to push because I can't carry on with this amount of pain. I have an appointment with him on the 5th November so I'm keeping everything crossed that there will be a long term solution!
It is the 1st November 2012 and I am still having lots of problems. My jaw comes out of place very frequently now, approximately 5/6 times a day and I am in chronic pain! I take cocodomol and naproxen regularly and then oramorph when I feel that I can't cope with the pain. I still have to go to A&E every so often (recently it's been once every week or two), and it is the same procedure but with more of a struggle and someone has to hold it in position for a very long time because the muscle spasms are so strong!
I have no quality of life as I go to work and to university which takes most of my strength and the rest of the time is spent with water bottles on my face, lying down to stop myself passing out,being sick or feeling dizzy. I have been researching jaw problems and I believe that the only solution is a jaw joint replacement. I highly doubt my consultant will want this procedure to happen but I am going to push because I can't carry on with this amount of pain. I have an appointment with him on the 5th November so I'm keeping everything crossed that there will be a long term solution!
Lateral Pterygoid Myotomy and Lateral Pterygoid Plate Osteopathy!!
20th December 2011 and I was booked in for a lateral pterygoid mytomy and a lateral pterygoid plate osteopathy! Basically, the lateral pterygoid (one of the jaw muscles which makes the jaw move from side to side) was detached at both sides in an attempt to stop it moving the jaw! My scar was opened up on the left side and the surgery was performed there and also the back of my mouth was cut open so that they could break the small bone which is attached to the muscle. When I woke up I was in agony and my arch bars were still fitted as I had to have elastics attached whilst I was swollen.
My lovely scar again and my cheek as it started to swell after the surgery!
Unfortunately, I couldn't eat my Christmas dinner (again) and I was in a lot of pain but still attempted to put on a brave face! After this surgery I got nerve damage in my left eyebrow which means that I can no longer raise it, and I also had short term paralysis of the left side of my mouth but this came back after 4 weeks.
I went back to work after 6 weeks off on the 6th January 2012, and went to see my consultant on the 11th January; we discussed a further operation on the right side of my jaw which would be scheduled for March/April time and I was happy with this decision because even though my jaw was far from perfect, I needed to improve my attendance at work and also get the grades at college so that I could go to university.
However, on the 23rd January my jaw yet again decided it didn't like staying where it should be and came out of place, which meant another trip to A&E (my second home). We contacted Mr Dodd because we didn't want the cycle to start up again and he booked an operating slot for the 31st January. Before this time my jaw came out of place a further 4 major times (which meant A&E) but countless times where I was able to fix it myself.
This time round, I had a lateral pterygoid plate osteopathy and botox, which meant that I had no external scarring and the operation was performed from inside my mouth.
After this operation, I did have a bit of a life, I managed to go back to work after my second sick note, attend university interviews and carry on at college. My jaw started to lock closed or out of position but if I left it, it would often go back to it's original position. In May 2012, my jaw locked shut, and at first there wasn't anything strange about this, but it remained locked for over 6 weeks; I was unable to open my jaw at all! This meant that I was back to a liquid diet and I was so frustrated because no doctor knew how to resolve the problem!
My lovely scar again and my cheek as it started to swell after the surgery!
Unfortunately, I couldn't eat my Christmas dinner (again) and I was in a lot of pain but still attempted to put on a brave face! After this surgery I got nerve damage in my left eyebrow which means that I can no longer raise it, and I also had short term paralysis of the left side of my mouth but this came back after 4 weeks.
I went back to work after 6 weeks off on the 6th January 2012, and went to see my consultant on the 11th January; we discussed a further operation on the right side of my jaw which would be scheduled for March/April time and I was happy with this decision because even though my jaw was far from perfect, I needed to improve my attendance at work and also get the grades at college so that I could go to university.
However, on the 23rd January my jaw yet again decided it didn't like staying where it should be and came out of place, which meant another trip to A&E (my second home). We contacted Mr Dodd because we didn't want the cycle to start up again and he booked an operating slot for the 31st January. Before this time my jaw came out of place a further 4 major times (which meant A&E) but countless times where I was able to fix it myself.
This time round, I had a lateral pterygoid plate osteopathy and botox, which meant that I had no external scarring and the operation was performed from inside my mouth.
After this operation, I did have a bit of a life, I managed to go back to work after my second sick note, attend university interviews and carry on at college. My jaw started to lock closed or out of position but if I left it, it would often go back to it's original position. In May 2012, my jaw locked shut, and at first there wasn't anything strange about this, but it remained locked for over 6 weeks; I was unable to open my jaw at all! This meant that I was back to a liquid diet and I was so frustrated because no doctor knew how to resolve the problem!
Next Step . . .
On the 4th October 2011, I had yet another operation at Aintree Hospital; this time my consultant opened up my previous scar to run a cold probe over the nerves to try and kill them. He also tried the botox injections again and even though this was only a relatively small operation it left swelling and tenderness for a few weeks.
It was hoped that this would be the last of my troubles but the pain was still agonising and my jaw would still pop out of place, the only difference was that I was able to get it back into place myself, for a couple of weeks at least! Then I was back into the same routine of jaw coming out of place, to A&E, at the same time this was happening I had just got myself a job at tesco and I was studying a foundation degree to hopefully get myself into uni!
A particularly bad dislocation was on the 19th November 2011; I went to A&E and they tried everything to get my jaw back into position but couldn't, so I was transferred to Aintee Hospital, given painkillers and had to await the doctors verdict the next morning. They tried a local anaesthetic which didn't work so I was taken down for an emergency procedure to relocate my jaw. The pain was horrible and I had to get a sick note because my jaw was so unpredictable I didn't know if it would be in place when I was required to work. My jaw was back to the same menial routine:
-26/11/2011 - Gas and Air
-30/11/2011 - Gas and Air
-02/12/2011 - Gas and Air & Local Anaesthetic
-04/12/2011 x3! - Morphine, Medazalam and Gas&Air in Resus
-06/12/2011 - Gas&Air and Diazapan in Resus
-08/12/2011 - Gas&Air, Diamorphine and Relaxant
-09/12/2011 - Whiston A&E couldn't get my jaw back into place so yet again, I was sent to Aintree Hospital. The next day (10th December), they decided to wire my jaws together as I had 10 days left until a scheduled operation and both myself and the NHS couldn't cope with the amount of times my jaw came out of place!
Thought I'd seen the last of these arch bars but obviously not! I lived off smoothies, soups, complan and liquidised mush that my mum managed to blend together.
Trying to smile even though this was the time to cry! I lasted ten days with my jaws wired together until I was admitted for another operation in an attempt to keep my jaw in place!
It was hoped that this would be the last of my troubles but the pain was still agonising and my jaw would still pop out of place, the only difference was that I was able to get it back into place myself, for a couple of weeks at least! Then I was back into the same routine of jaw coming out of place, to A&E, at the same time this was happening I had just got myself a job at tesco and I was studying a foundation degree to hopefully get myself into uni!
A particularly bad dislocation was on the 19th November 2011; I went to A&E and they tried everything to get my jaw back into position but couldn't, so I was transferred to Aintee Hospital, given painkillers and had to await the doctors verdict the next morning. They tried a local anaesthetic which didn't work so I was taken down for an emergency procedure to relocate my jaw. The pain was horrible and I had to get a sick note because my jaw was so unpredictable I didn't know if it would be in place when I was required to work. My jaw was back to the same menial routine:
-26/11/2011 - Gas and Air
-30/11/2011 - Gas and Air
-02/12/2011 - Gas and Air & Local Anaesthetic
-04/12/2011 x3! - Morphine, Medazalam and Gas&Air in Resus
-06/12/2011 - Gas&Air and Diazapan in Resus
-08/12/2011 - Gas&Air, Diamorphine and Relaxant
-09/12/2011 - Whiston A&E couldn't get my jaw back into place so yet again, I was sent to Aintree Hospital. The next day (10th December), they decided to wire my jaws together as I had 10 days left until a scheduled operation and both myself and the NHS couldn't cope with the amount of times my jaw came out of place!
Thought I'd seen the last of these arch bars but obviously not! I lived off smoothies, soups, complan and liquidised mush that my mum managed to blend together.
Trying to smile even though this was the time to cry! I lasted ten days with my jaws wired together until I was admitted for another operation in an attempt to keep my jaw in place!
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