Little Update - Day 352 - 5th December 2013

Merhaba (hello) from Turkey! 

So just a little update as I'm on holiday at the moment. I went to

see the consultant and didn't really gain much from the appointment. He has said that he has liaised with his colleague who has said we need an opinion from a neurologist before anything else is done. They are concerned if they stun the nerve they could end up causing more damage in the long run.

I hope by the time I get home from holiday I will have my date to go and see the neurologist as Mr D said he was going to rush it through as a priority. 

Mr D did give me some cream to use,it's EMLA cream, it's basically the magic cream they put on your hand before giving you an injection when you're a child. You have to smother the area then cover it with a clear plaster and in about 45 minutes the area is numb.... It's heaven but it only lasts about and hour. It's good to use as a little relief though, and as you can see, having white cream all over your chin is a sexy look! 😋

Can't believe it's nearly been a year, almost a perfect recovery with fabulous results other 
than this naughty naughty nerve.

                                   Kisses from KjS-T x 

Working towards Thursday - Day 336 - 19th November 2013

Well today is day 336 post operation, on Thursday I am going to see my consultant Mr D and I'm hoping to hear what he has planned for the nerve in my chin. 

If we take the nerve out of the equation for a moment, I am over the moon with the recovery now. I'm getting used to life brace free and I often catch myself staring at my lovely straight teeth in the mirror. I'm religiously sleeping in my retainer every night and when I went to see Prof two weeks ago she was happy with the progress. I have to see her again early next year where I will have a joint appointment with her and the consultant to discuss the progress from an orthodontics point of view. 

The swelling has 90% gone but my cheeks do puff up if the jaw has had a particularly active day. Obviously all the bruising has long gone and the scars inside my mouth have all healed lovely. 

In regards to feeling and sensations everything (apart from my lower lip and chin) is perfect and back to normal. 

As the cold weather has moved in I've noticed aching in my lower jaw bone on the right hand side but I just try and keep it covered where possible and avoid walking directly in the wind. 

Mouth opening is also really good and has improved a lot from before

the operation. Mouth opening was very restricted to under 1.5cm's and now it can comfortably open to 3.5cms.

So now, we move onto the one side effect from the surgery that has really got to me. The messed up nerve in my chin. At every movement no matter how big or small it sends a horrible sensation upwards that feels like an electric shock or that similar of having an elastic band twanged on your chin. 

Virtually any movement or contact triggers the pain off. Talking, smiling, laughing, eating, brushing my teeth, washing and applying make-up even having my hair brush past it and applying lip gloss is uncomfortable. 

It's so hard because to look at me I look normal, and I think people do forget that I have it. At the end of the day I still have to do all the trigger acts during the day as it's impossible not to move your chin for any period of time. 

The chin even effected Halloween with only half of my face being able to stand the application of special effect make-up (actually worked out quite well though)

I find I get very drained, and I put this down to the pain being so constant and painful. By the time 2pm comes I can't be bothered with the pain so generally have very quiet afternoon. (This for some friends and family is heaven) Painkillers and medication  haven't done anything really other than make be feel groggy and even more drained.

So on Thursday I will meet with Mr Dodd and see what he has planned, the last time I seen him 2 months ago he was still at a loss as to why this has happened. He recalls seeing the nerve during the surgery, and is certain it wasn't cut, if anything it may have been stretched but he would have expected it to have healed by now. At this stage, at around the 12 month mark, this gives an indication of what the finished product will be. Unfortunately that means a messed up chin. During my last appointment Mr D said he would liaises with his colleagues and a neurologist about a procedure to touch the nerve with a cold probe to essentially stun it. This would temporarily make it numb and may kick start the recovery process again. 

A few months ago this was a worst case scenario, but now I am quite literally at the end of my tether and would try anything! Although I need to get a more in depth break down of the pro's and cons before a decision is made. All I know is that I can't put up with this much longer so Thursday can't come quick enough

I'll update further after the appointment on Thursday

KjS-T x 

P.S I still find it hard to believe the then & now!

Still no change - day 275 - 19th Sept 2013

So today is day 275 since the operation andthe nerve pain is exactly the same! 

I went to see Mr D last week who is totally confused by this naughty nerve. He said he seen the nerve during the surgery but he definitely didn't cut it but It's possible that it got quite stretched. 

My jaw and teeth are fabulous and I'm getting used to life brace free. My jaw aches every now and then but it's not horrendously sore. 

This nerve pain however, is very draining and wears me out. Every time I speak, smile, eat, wash, apply make-up or laugh it feels like I'm being beat in the face with an elastic band. 

Mr D now wants to give the nerve up to

the first anniversary of the surgery in December before he intervenes. He said he will assess it again in December and if there's no improvement he will liaise with a neurologist and look at stunning the nerve. He would do this by touching it with a cold probe. Initially if will be numb, and then if with either... Stay numb, kick start the repair process or come back.... Worse! 

At one point numbness was the last thing I wanted, but now I'd take anything for some relief. 

Md D wants me to stay on the medication until December and he does hope it will burn itself out, but in not too sure. I've not seen an improvement at all and the pain is pretty much the same. It's reduced slightly with the Pregabalin medication but is still very much there. 

In regards to feeling and sensation everything apart from my gums and chin is back to normal. 

I can't explain how my chin feels but, if I have a hot drink and rest the cup on my cheek, I can feel the heat from the cup and also the pressure that its pressing against my skin. If I rest a cup with a hit drink on my chin, I can't feel the heat at all, but I get the electric shock feeling because of the physical contact. 

I think this type of pain us very draining, because its so constant. Towards the end of the day, I can't even be bothered to talk because it wears me down so much. 

And the medication makes me feel a bit groggy, but, I know we need to exhaust every option before Mr D intervenes so I'll stick with it. 

I'm loving life brace free, I couldn't get used to looking at myself for ages, it looked like there was something missing from me. I've been really good and wear my retainer every night, all night. I'd be stupid not to though because you don't want to mess two and a half years of dental work up. 

A few people have asked me if I regret having the surgery and the answer is well and truly not. Yes, I've had a few complications but the positives well out weigh the negatives. 

Thanks for all your messages, and thanks for reading my blog. 

KjS-T x 

Operation Update & Brace Removal - Monday 8th July

Monday 8th July

So it's three weeks since the operation to remove the plate and I'm pretty certain it's not worked. 

I went into hospital at 11:30 and was in theatre for about 13:00. Before my surgery I had a good chat with my consultant Mr D who stressed that there was no guarantee that the surgery would release the pain but at least it would eliminate a cause. 

The same anesthetist that put me to sleep on my last two operations was in the anesthetic room so I felt quite reassured but the assistant putting the mask over my face was pushing it down really tight over my nose and mouth and I had a bit of a panic attack. Before I knew it I was waking up in the recovery room feeling very sick and cold. 

The nurses wrapped me in hot blankets and were very kind to me, the nurse actually remembered me from December so was talking to me to try and keep me awake. It was 5:30 by the time I was ready to be taken to the ward so I'm not quite sure how long I was under for. 

Once on the ward I didn't feel sick but my mouth was bleeding quite a lot. I lay there for a few minutes then thought.... I need to try and get up. It took me ages as I felt a bit wobbly but I managed to change into my PJ's then get myself to the toilet. 

I then had some soup and ice cream and then my mum and husband came to visit. 

Mr D came round at about 7pm and told me that one of the screws in the plate had come loose and the bone was infected. He also said that the screw nor plate where particularly close to the nerve but he removed it anyway and cleaned the bone. He also injected some long lasting anesthetic into the problem area for some short term relief. He said that the breaks he made in December had 'softly healed' and would take another 6 months to get up to strength. 

My face was swollen and there was a nice thumb sized bruise on my chin. 

I had some pain killers and when the nurse did my obs he said I might be able to go home later on. This is exactly what I wanted I hear so mum and Matt hung around until I got discharged at about 9pm

I was so pleased to get home and get into my own bed. I slept on and off that night. I couldn't lie on my right side as it was sore from the surgery and I couldn't lie on the left side as the right side would pull. 

When I woke up the next day I was really bruised and swollen. I couldn't really feel the nerve pain as everything was swollen and numb. I spent the next few days taking it easy, I was taking tramadol for the pain which was making me drowsy and feel sickly.

Two weeks after the surgery when I was brushing my teeth I noticed that the unpleasant sensations were coming back. Mr D had said it could take a while for the pain to subside and the nerve to repair so maybe things could improve. 

On Monday 1st July the big day came.... Brace Removal Day!!! 

I was a little concerned that they weren't going remove the brace as I still had stitches in and the incision was still lumpy and raw. It was music to me ears when Prof said it would be coming off. 

She started pulling, cutting and tugging and I was in absolute

agony. I had tears in my eyes and could've quite easily told her to stop. I just closed my eyes and was thinking of the end result. 

It comes as no surprise really that it was painful, those braces had been on for two and a half years. 

When Prof handed me the mirror I nearly cried, it didn't feel real, I didn't look like me and my mouth felt so empty. 

They took two lots of impressions of my teeth, some for my retainer and some to be used as study models. 

My husband and I then had to go away for a bit and return to the hospital 3 hours later to pick up the retainer. 

We went for a walk into City and had some lunch. I couldn't stop smiling, people must have thought I was weird. To everyone else it was another normal Monday, but for me it was such a special day. 

After we had been for some lunch we headed back to the hospital where I was fitted with my retainer. It's a little clear retainer that I ave to wear for the next 12 months. 

As I've still got the nerve pain the doctors have changed my medication from the Gabapentin to Pregabelin. They work in a similar way so I have to start on a low dose and gradually build it up. They're making me a bit dopey and sleepy but I'm willing to give them a try. 

I'll keep you all updated on my progression, quite a few people have asked me if I regret having the surgery done given the post operative complications. I say not-at-all. The look and feel of the results are fantastic, it's just unfortunate that I've got a naughty nerve. 

As you can see from the pictures below... I'm a lot straighter these days. 

Operation Day - 18th June 2013

So, 6 months to the day of my last jaw operation, I'm sat waiting to go in again. 

I'm desperately hoping that once this problematic plate is removed I'm going to be free of these naughty pains that shoot off every time I moved mouth. 

I'm hoping I can chew, smile, laugh, talk and brush my teeth with no pain. 

If it doesn't work, at least we know we've tried something and ruled a possible cause out.

I'm all checked in at the hospital, had my obs done and now it's just a case of waiting. 

Typically I'm absolutely starving, I could just eat something really stodgy, fatty and bad for me. Hmmmmmmm I'll stop thinking about food as mouth is watering! 

I'm feeling all nervous and Shaky, the waiting is just the worst!  It gives you time to think and get yourself worked up. Made even worse by the fact relatives aren't allowed to wait with you. They've said it's because there's not enough space but there's only actually me in the waiting area! I'm sat on one side of the wall and my mums sat on the other!  

I'm so anxious about the anaesthetic again, I don't mind being cut, drilled, stitched, sore and swollen but I have an almighty fear of anaesthetic. I think it's not being in control that's the problem... I'm a total control freak! 

Right, I'll see you on the other side! 

Wish me luck and keep your fingers crossed this works! 

KjS-T x 

Another Op!!! - Day 168

Well I'm finally back at work, I've been back for 3 weeks and I'm still finding it very very tiring. Work have been really supportive and are letting me do reduced hours and flexible shifts. I've been able to work my working day around the medication for the nerve pain as it still makes me feel drowsy, dreamy and drunk.

I've been in contact with my consultant Mr D today and he has said he's going to take one of the metal plates out on 18th June. In a bid that it may relieve the nerve pain and to give him the opportunity to clean around the nerve / plate, he said he'll also inject some long lasting local anaesthetic into the area. 

A few months ago another operation was a very last resort but now with no improvement in the pain I'm willing to give anything a go. I hope it works and I'm finally free of these horrendous sensations and then off the vile Gabapentin.

 

BIG Brace News!! - Recovery Day 147

Wednesday 15th May 2013

Well, where am I up to? Unfortunately I've not progressed much in the last few weeks with regards to this blasted nerve pain. I went to the hospital to see Mr D and he is confused by this pain. He has only seen this in one patient before. He doesn't know if its just coincidence but that patient had condylar hyperplasia on the left side the same as me. After my examination poor Mr D leant back in his chair with his hands on the back of his head and he said 'I'm not sure, I really don't know' Eek.... Very reassuring! 

So he hatched a plan.... He is going to give it four more months on the tablets to manage the pain and to give the nerve a chance to heal. One explanation for this excruciating, unpleasant pain could be that a screw from the plate is actually touching the nerve. (That would explain the vileness of this pain) unfortunately there is now way to see if the screw is on the nerve without going back in. 

If after four months things are still the same he will refer me to a neurologist. He said this would be more for a research thing but they may be able to view things from another point of view. If after that there is still no improvement then as a last resort and very reluctantly from me he will operate and remove the plate. 

Brushing my teeth is still awful as is chewing, especially on the right side of my mouth. I'm still on the top dose of the Gabapentin, I tried reducing them but the pain intensified again within a few days so I upped them back up to the top dose. The tablets aren't very nice, they leave me anxious, nervous, forgetful, confused and drowsy at times so its a bit of a double edged sword... pain or a messed up head.

I've had some very exciting news on the brace front though.... THE BRACE WILL BE REMOVED ON MONDAY JULY 1st. I literally can't believe that in 6 weeks and 5 days I'll be braceless after 2 years and 4 months. 

I've been looking through my progress pictures and you can

really see the difference in the shape of my jaw from before intervention to now. My friends and family say they never noticed what was wrong until they compare the pictures. 

Obviously, this whole thing hasn't taken place for cosmetic reasons, it's been done to correct the damage caused by the Condylar Hyperplasia and to help correct the bite.... The new gorge jaw and uber straight teeth are just a massive bonus. 

Recovery Day 120 - 16th April 2013

So today I'm 120 days post op and I'm finally on the right

path. For a little while now the jaw side of things have been great. There is the odd achey pain if my jaw has been working particularly hard but on the whole from a bone side of things, we are pretty much there on a recovery front. I'm happy with how everything is looking and feel that I'm finally starting to look like my old self again but with a lovely little jaw now. 

In regards to my blocked Eustachian tubes and damaged sinuses we have movement too. The doctor suggested that I try to use steam to free the trapped mucus. On this advice I've been sitting in the steam room at the gym and the most horrendous green, orange and bloodied glue like substances have been coming out of my nose and running down the back of my throat. This substance is not normal, every day snot... This is the strangest thing I've ever seen. Things aren't sorted yet as I'm still deaf when I first wake up and get sore ears and cheeks. I'm going to keep up with the steam rooms to keep things moving. I've got the results of the CT scan on Thursday so hopefully we'll have confirmation either way of what's going on with these tubes and sinuses. 

Unfortunately I'm still having issues with the Trigeminal Neuralgia, take my word, this is one nasty condition. Over the last few weeks I've built the tablets up to 9 a day. 3 morning, 3 afternoon, 3 bedtime. I hate taking tablets but I'm literally willing to try anything. The pain is awful and literally leaves me drained and in tears. There has been a big improvement in the pain and it feels as though its been turned down when I'm talking but when smiling, laughing, chewing and brushing my teeth it's still very much there. I'm literally crying when brushing my teeth.

I'm hoping now I'm on the top dose I'll get an improvement. My doctor has said that the medication is an accumulative medication so she is hoping to see a change in the pain levels. The knock on effect of taking so many tablets means my heads is a little dreamy and woozy making driving and concentrating difficult. I went to the doctors the other day and had to fill out a form and I managed to spell my address and my doctors name wrong! 

Numbness wise I still can't feel my lower right lip, overall this doesn't bother me too much apart from when food gets stuck on it and I have no idea! 

I've been wearing my new brace bands for nearly 8 weeks now and I am back at the dental hospital on Monday, where I'm hoping for news of the removal of the brace! Eek the thought excites me no end! 

Recovery Day 98 - 25th March 2013

Today is recovery day 98, my jaw is healing really well. Most of the swelling has gone down apart from a little bit on either cheek and the majority of my feeling has come back apart from the right hand side of my lower lip which is still completely numb. I get increased swelling if I've been particularly smiley or chatty. 

I am still having issues with my Trigeminal nerve and the Trigeminal neuralgia. I'm still getting awful pain / sensations whenever I move or touch my chin. This includes any movement whatsoever by talking, laughing, smiling, eating, drinking or brushing my teeth and I have constant pain in my teeth. 

I went back to the doctors on Thursday because this was the two weeks of taking the Gabapentin tablets and i'd had no improvement. The doctor said I was to up the dose and include a midday dose. This meant I was taking 1-1-2. She said if there was no improvement after 3 days to up the again to 2-1-2, then if no improvement after that that dose up the again adding 1 tablet each time until the tablets either work or I reach the top dose of 9 tablets a day. I really hope they work soon because I need some relief from these sensations and teeth pain soon. The pain is literally draining. 

I upped the tablets to the 2-1-2 dose yesterday and I was quite poorly. I had a headache and felt sick and dizzy. The doctor said this may happen when I'm upping the doses and said that I should avoid driving. Grrrrr I hate it when I cant drive, I tried a little test drive, driving 3 minutes up the road to my mums the other day and I really didn't feel right so I'm going to take the doctors advice. I felt so awful yesterday after upping the tablets, I spent the day in bed. The dogs and my husband were very supportive and also spent the day in bed. They claim they were looking after me but I think they were being lazy! 

In regards to eating I'm doing really well. I can eat things that are reasonably soft such as noodles, rice, pasta, vegetables. I can't eat anything that requires biting or chewing because that movement effects the Trigeminal neuralgia. It's not really my jaw that's effecting the eating at this stage it's the Trigeminal neuralgia. I went out for the first time on Friday for a friends birthday on Friday. It was nice to get dressed up even though applying make up is painful. But picking food in the restaurant was hard work. There were so many yummy things I wanted to eat and couldn't manage. It was a nice evening but I was swollen and sore on Saturday as a result of all the chatting, smiling and laughing. 

In regards to the Eustachian tube dysfunction, I'm still a bit deaf when I wake up and my cheeks often ache. I also get shooting pains, mainly in my right ear. I'm going for a CT scan on 31st March to have a look a what's going on with the tubes and sinuses. 

I literally can't wait for this Trigeminal neuralgia to go away, its really annoying and can get you right down in the dumps. If it wasn't for that I'm sure I'd  be feeling great, the lasting side effects of Eustachian tube dysfunction, limited swelling and numbness are liveable and in a way expected to still be flaring up at the this stage of the recovery every now and then. Fingers crossed over the next few weeks I'll find my dose of medication and the Trigeminal Neuralgia will be in hand. 

Enough is Enough - Day 80 & 81

So over the last few days the sensitivity in my chin has intensified, and any movement or stimulation has been reducing me to tears. I arranged to see my consultant Mr D yesterday to see if there is anything he could do about it and to see if he could check my puffy cheek.

Matt has always driven me to hospital appointments because I'm still struggling with my ears and balance but today nobody was around to drive me so I had to drive myself. I was anxious about it because its a 40 minute drive, but I made sure I left with plenty Of time, so I could take my time and wasn't rushing. The drive wasn't too bad but when I arrived at the hospital the parking was a nightmare as usual! 

I eventually got parked and made my way to the clinic. When I checked in at reception another patient in the waiting room said she recognised me from my blog and we had a little chat about our surgery and recovery. It's so good to chat with people who are going through similar things as you. Although every operation is different there are similarities in every case. It was nice having someone to chat to as there was a 30-40 minute delay to see Mr D. 

Eventually Mr D called me in, firstly we discussed my cheek. He poked around the area of the cheek plates and didn't think there was infection.

Then we moved onto the chin. He asked me to remove my brace elastics then started prodding around. First he touched my gums at the plate locations to see if there was any pain that could indicate infection. There was tenderness but no pain. The tenderness is likely to be scar tissue. Then Mr D moved to the right hand side of my mouth and he touched exactly where is giving me grief. I jumped out of my skin then burst into tears it felt so awful.

I think Mr D was horrified that I was crying, he was so reassuring and was trying to calm me down. He asked me some questions about what triggers the pain and my response was anything really, teeth brushing, talking, shouting, laughing, smiling, washing, moisturising, walking. Basically anything that involves my chin moving. Mr D injected some local anaesthetic into the inside of my mouth. The idea of this was if the pain disappeared when the anaesthetic worked he could diagnose and treat me. He sent me for an X-ray while the anaesthetic started to work. The X-ray was to check for signs of infection around the plates. 

As I was walking to X-ray the anaesthetic was working and the pain had gone, oh my god it felt amazing to be able to move my mouth without having intense horrible sensations whizzing around  the lower part of my face. I had my X-ray then headed back up to the clinic. Mr D checked the X-ray and there was no sign of any infection around the plates. He said there was a bit of arthritic shading at the jaw joints that he would expect and all in all the X-ray looked great. 

So as the pain had gone with the local anaesthetic Mr D is certain the I have Trigeminal neuralgia. 

(information for NHS choices website) 

Trigeminal neuralgia is sudden, severe facial nerve pain.

The main symptom of trigeminal neuralgia is a severe stabbing or piercing pain in your face that comes on suddenly.

The pain is almost always on one side of your face, although in rare cases it is on both sides. It can be in the lower jaw, upper jaw, cheek, and less often the eye and forehead.

The pain may last from a few seconds to two minutes each time and you may also feel:

tingling or numbness in your face before the pain develops

a slight ache or burning feeling during the attack

You may have spasms of pain regularly for days, weeks or months at a time. In severe cases, you may feel pain hundreds of times a day. Some people experience a constant dull ache in certain areas between episodes of pain. However, it is possible for pain to disappear completely and not reoccur for months or years.

Triggers of trigeminal neuralgia

Episodes of trigeminal neuralgia can be triggered by certain actions or movements, such as:

talking

smiling

chewing

brushing your teeth

a light touch

shaving

swallowing

a cool breeze

head movements

Living with trigeminal neuralgia can be difficult, and it can interfere with your quality of life. You may feel like avoiding activities such as washing, shaving or eating in order to avoid triggering pain.

Living with pain, especially if it affects your quality of life, can also lead to depression (feelings of extreme sadness or despair that last a long time).

Mr D prescribed with some Gabapentin tablets that are given to people with epilepsy and peripheral neuropathic pain which is long lasting pain caused by damaged to nerves. The tablets aren't painkillers, they desensitise the nerves that effectively lessens the pain. So I have to start taking one tablet a night for two days, then one tablet twice a day for two days, then one capsule of a morning and two of a night thereafter. They can cause drowsiness and dizziness and may make you giddy! So I'll have to assess driving after each increase of tablets.  

In regards to the Eustachian tube dysfunction effecting my ears, cheeks and nose Mr D has requested a CT scan to check my sinuses to see if they're blocked, so I'll be having that in the next few weeks. All in all, a very productive appointment. Mr D knows I'm not a baby and I'm normally in his words 'a tough cookie' so he knows things must be bad for me to be reduced to tears with the pain.

Mr D said that I was to take it easy in the afternoon as once the local anaesthetic wears off the pain might come back with a vengeance! So I drove home, had some lunch, took advantage of brushing my teeth virtually pain free then chilled out. Mr D was right, once the anaesthetic wore off it was back in its full glory! Totally depressing. 

At 11pm I went to bed, took my tablets and fell asleep nice and easy. I'm not sure if this was because I was so tired or if it was the tablets, but I was ready for a good nights sleep. 

So I woke up this morning nice and fresh, my chin, cheeks and ears are still the same but at least now we're working towards some relief now. That's reassuring in itself.

Update so far.... Day 77

I'm 11 weeks post op tomorrow and I feel as though I've hit a recovery brick wall, so I'm not going to bore you with the same old stuff day in day out. 

I've got Eustachian Tube Dysfunction effecting my ears, sinuses, cheeks and nose giving me deafness when I've been lay down for a period of time and pain in those areas. 

I also have issues with the nerves in my chin and gum giving me very unpleasant sensations when my chin is moved for example when I speak, laugh, smile, wash etc and teeth brushing is horrendous when contact is made with my right gum or when my chin moves with the vibrations of brushing.

In regards to swelling 70% has gone, it's mainly my cheeks at the moment that are puffy, especially my right one that has also gone hard due to infection. The swelling fluctuates depending on how much action I've had that day. 

The majority of my feeling has come back apart from my right lower lip, that is completely numb and my chin that only has about 30% feeling in it. 

From an orthodontics point of view, everything is great and I still have about four weeks of wearing tiny bands between the upper and lower teeth.

Thanks for reading and for your messages and comments, I'll post weekly unless anything of note happens

KjS-T x