My story

Hi there, I stumbled across your website by chance last week and may I say a big thank you for all the kind words.
Well here goes this is my story.
When I was 16 I had a very poor dentist and got lots of abscesses and ended up going to my local hospital to have a procedure called apicectomy. ( a procedure to drill to the middle of the tooth and get to the tip and remove it from the gum). whilst under my anaesthetic someone forced my mouth open too wide and later I developed a problem called tmj ( this is a problem with your jaw joint).
Well after several surgeries it became apparent that tis was going to be a long standing issue. I was treated at three hospitals in my area and finally at the age of 23 being pregnant and having my jaw wired for seven months of the pregnancy I said enough was enough. I had undergone 17 surgeries at this point on my jaw I had experienced s a facial palsy due to severing of part of my facial nerve ( accidental). So I was refereed to Manchester where I endured a further 5 surges but to no avail. THe pain in my jaw region was pretty sore and I experienced sharp shooting pain around my temple.
Eventually I was referred to st James hospital in Leeds and the consultant removed my rib and grafted it on to my jaw joint , this went well but due to the stress placed on the other side that had degree acted too so I hinder went a condyle shave ( the tip of the head of the jaw was smoothed down to try and help reduce the pain and increase function. Unfortunately this did not help and in 1998 I needed another rib graft for the other side.
This procedure gave me 15 years of pain free time, it was amazing I could get on with life finally.
Then two and a half years ago the pain came back I could not believe it. So I asked my new dentist what to do she referred me back to Leeds but my consultant had retired and the new consultant informed me I needed total jaw replacement on both sides. I was so shocked, well my rib grafts had dissolved and my jaw was just hanging really. So I was referred to bradford hospital which is about two hours away form where I live. I met a lovely man he is a gem . He took me to theatre to firstly remove the scarred bone and all the arthritis that had built up. THis is when I developed this horrible pain behind my eyes and constant headache . This was the 27 th surgery so it has been through the wars my or face. I ended up having my jaw wired shut with elastic bands as I did have bone screws but they kept coming out. So I went back to theatre and had arch bars placed and wired around my teeth. I have been unable to eat normal food have relied on blended food and lately I have managed things like bread dipped in soup .

I eventually went for my jaw replacements in may but this pain is still there. My consultant has tried Botox as he said that I had severe muscle spasm has I could not open my mouth wider than 2 cm. we have had my elastic s on since may . I have been to theatre to have a Mia of my jaw to try and force it open , I have undergone cryo five weeks ago to try and freeze the nerve butto no avail.
I have tried numerous potions but I am so sensitive to medication I need the child dose and even then the effects are so debilitating so unable to control the pain.
I felt very low I am married but my family have been on this awful journey with me that I cannot offload on them . My hubby who is normally very strong got quite depressed earlier in the year so I don’t want to create any more stress for him. When I had the cryo five weeks ago initially I was pain free it was amazing but four days later the pain came back . Everyone was so pleased for me that I was pain free that they keep asking how I am doing . I can’t say it’s back so I say it’s fine.butits not fine far from it . I e mailed the Samaritans last week because I just wanted to tell someone who did not know me what life was like at present. I have been to see my gp but he lauded at me and at the time I was wired , so apart form getting upset I decided I can sort it out myself. I am a nurse so I know what to do mist of the time but sometimes I know I need to ask for help, so this is when I found this forum.
My consultant is great supportive and he said we will go through this together he won’t let me go through it on my own. I saw him last week he injected local into the area in front of my ear it hurt but it did help. He said he has not Cryed that area so the plan is to go ba ck in around January.

I know he is grasping at straws he tells me I am the most difficult patient he has ever had or seen make me feel so good not.

I have been to pain clinic but they were not helpful they said the only thing he could offer me was something called a stellate ganglion block but he said it can affect your breathing if it goes wrong and with my limited ending it is quite dangerous, he obviously felt uncomfortable doing the procedure so if he had no confidence I certainly didn’t so was discharged . I have tried amytrpline and diazepam and gabapentin but the effects are not tolerable.

I have had Botox leak into my eye causing my vision to slant and now not sure if it due to the branch of the trigeminal nerve the ocular part whether this is attributing to my blurry vision .

So that is my story thank you so much for listening and letting me vent , I am not angry with all that has happened I just want to be pain free and live my life as a 46 year old fun loving woman .

Vent away, that is what this group is for. You are so brave enduring all of this and still no resolution:( I feel sad for you and wish I could make it better. {{Big hugs}}

Thanks for taking time to read . Yes it does make it better to write down how you feel it’s less emotive than face to face.
I just want to be me not a lot to ask but guess it is . Thanks for the hugsxx

Hi Foxy,

I couldn't believe the line of treatments you've undergone and still no relief:( I'm also on this website because of a few dentists messing my teeth; my ATN journey started with getting braces on 5 or 6 of my lower teeth, would you believe it? Unlike you, I still get angry at times, sometimes, I'm resigned, and there are days when I wonder how on earth I got here. I hope that one day soon I'll be able to accept what has happened, because I feel it would make things easier. I think it's good for you that you've managed to come to terms with all that's happened. Thank you for writing your post, you come across as a wise and strong woman....but no matter how strong we are it's always so much better to share our load, that's one of the reasons why I like to come here; trying to explain our pain and the fear which comes hand in hand with it to someone who has no clue can be frustrating. I truly hope that you'll get relief soon xx

Hi oldriska, thanks for taking the time to read my story. The reason I don’t get angry is because I cannot change the past it happened I have to deal with it.the same goes when people tell my I should have sued . Money will not make the pain go away it changes nothing.
Wise and strong not sure about that one . Sorry to hear about your issue how do you deal with your pain?

Hi Foxy,

Thank you...well some days are better than others. My pain is well controlled now (it's mild/moderate on most days and I had a surgery on my lower jaw recently which was a success - the tension in my jaw is gone, now I'm only left with the pain). I find it frustrating though that this may be for life. I'm 33 and would like to have children one day, but there are things to consider about pregnancy and TN or ATN.

I have filed a complaint to the Association of Stomatologists and am preperad to sue. The money part is important for me, because it has cost me a little fortune to get my teeth fixed at least partially , and every month I pay a lot of money for ATN-related treatment, so I have no money left to buy or do things I enjoyed in the past. Also, I can't get over the fact that I had complained of pain for months before my then dentist took an x-ray; my nerve could have been ok if it wasn't for the infection which had spread deep into the bone....

Anyways, I hope we both and everyone else on here have many pain-free days, that's what matters most:)

Take care,

Oldriska

When I read that a lovely gem of a man took you to the theatre to remove scarred bone and built up arthritis, I thought I was up late watching a mid-night horror show with Boris Karloff or Lon Chaney. Then , I remembered, Oh Ya, theatre as in surgery. First of all, I'd like to know what spiritual path you are on. You have an unbelievable acceptance of your situation. If you google ,stellate ganglion illustrations, you'll find some interesting stuff. Also use the search box, located in the upper right hand corner of the page. There are a few bits of info there but stay tuned. I'm sure you'll receive a valuable response from the membership. I reread your story and I saw no mention of Trigeminal Neuralgia. Has anyone brought this up? You've found a great place with wonderful people to share your experience. Welcome.

You made me laugh thank you it’s been a long time since that phenomenon . Not any spiritual path just know that if I worry about what has happened and I reflect on it I would feel much worse than I do at the moment. I hate being in pain and not being in control , but feel helpless.i think I am guilty of worrying about what people think too much I don’t like to upset anyone and I don’t always say what I think . Which I guess is nit too good . If people upset me I think about it and think of what I should have said . My consultant says that I have got nerve pain through all the surgeries I have had also chronic pain syndrome all these labels but no answers or help. When you have pain all the time you just want someone to wave a magic wand and get rid of it , not possible I guess. So just have to think of ideas any would be helpful .
Thanks again for reading and taking time for talking to me x

Hi oldriska,

Yes it is different when you live stateside you do have a great deal of expense. I lived in California or two years the medical system over there is strange. Well I wish you luck with your case. I do hope that you do get some relief from your pain . Yes nerves are very fickle they can regenerate but it can take up to twelve months and even then the full function is not easily achieved. I know my facial nerve could have been sutured repaired but because of all my issues with my jaw it w as not an option and I don’t have o look at my face all day it is only the other people that have to see my wonky face. After my surgery in may I had a great deal if facial weakness so much so that I looked like I had suffered a stroke . I did not. W ant to go out or have visitors in time it has got better but not perfect .

Well I am off to get pain killers thanks again take carex

((foxy)) glad to have you join us, so sorry to hear of your struggles.
SFBill, made me laugh too! Havent done that in awhile… :slight_smile:
I’m so grateful for this site and the understanding and camaraderie we share despite the pain.
Mimi

Hi Mimi,
Yes it’s good to laugh,so bill made both our days . Perhaps there should be a joke feed?
I am off to hospital to get my arch bars off tomorrow . So I may be a bit groggy after my general anaesthetic.
At least I should get a few hours pain free so that will be nice.

So medicines I take it most people on the site are taking medication similar to the gabapentin and amytrpline, neurotin etc . How long does it end to take before it gets in to your system and you start to reap the benefits?
Also has any one had issues with in tolerability with these types of drugs and what course of action have they tried
Mimi what have you tried in the past with good results?
Well I hope you have a good day today .
Take care x

Hi Bill, yes I googled the stellate block it does look quite scary the illustrations were really good. The approach to c6/7 looks quite tricky . I can see why the dr was not keen in performing this procedure for me.

The only thing is I do feel in limbo if this pain behind my eyes would just give me some let up I would be fine. I researched the trigeminal nerve quite a bit it does slit into three sections , firstly it feeds the ocular area then the cheek and also the mandibular are. . So when I try and analyse what is happening maybe its the ocular branch that is causing issue with me and that maybe it may have A small haematoma ( clot of blood) on it or it is impinged that if this could be checked maybe something could be done but not sure how we diagnose this or who could do this procedure if it appears to be the issue. Any thoughts.how do you cope with your pain . I see you are a moderator of the site so I guess you have had some intense pain too. How did your pain start and is it controlled now?
Right off go get ready for tomorrow take care x



SF Bill said:

When I read that a lovely gem of a man took you to the theatre to remove scarred bone and built up arthritis, I thought I was up late watching a mid-night horror show with Boris Karloff or Lon Chaney. Then , I remembered, Oh Ya, theatre as in surgery. First of all, I’d like to know what spiritual path you are on. You have an unbelievable acceptance of your situation. If you google ,stellate ganglion illustrations, you’ll find some interesting stuff. Also use the search box, located in the upper right hand corner of the page. There are a few bits of info there but stay tuned. I’m sure you’ll receive a valuable response from the membership. I reread your story and I saw no mention of Trigeminal Neuralgia. Has anyone brought this up? You’ve found a great place with wonderful people to share your experience. Welcome.

Hi Foxy, oh I’m glad you’ll get a little respite from the pain with the anesthetic. Hope when it wears off you don’t have too much discomfort from the procedure.
Actually there’s a group that posts happy things! Check it out on the groups tab.

I had been very lucky in that My TN responded well to slow release Tegretol. Usually around 800mg and I could function pain free…UNTIL this year…

I’ve been struggling since April to find pain control, adding meds, taking them away it’s been a rough 8 months. I’m currently on 1600mg Tegretol ( my max) and 60 mg Baclofen. No relief.
I see my neuro next week so we’ll see what plan G is…lol no word of a lie, it’s difficult going on new meds, increasing, then weaning and adding another…nothing seems to be working.

We all respond so differently to the meds, and our course with TN is so individual, we have similarities, but it’s unique to us.
We have to keep trying…

(( hugs)) Mimi

Hi Mimi, yes it is hard to start meds I can only manage 10 MSG baclofen twice a day otherwise I am really disorientated and very sick we did try to increase to 15 mgs but it was horrendous. Se what I mean about a child’s dose.

It is hard when one plan does exactly the opposite and does not work and you try different options they come and go , it feels like you are just a gunea pig but you are willing to try anything just to get on top of the pain . I know got the t shirt.
Good luck with your neuro consult have they ever discussed trying to decompress this nerve just wondered what ideas are on it across the pond.

Take care let me know what happens. Sending you hugs .x

I actually met with 2 different neuro surgeons to discuss MVD. I chose one, and should be having the surgery within the next 8 mths. My case is a bit unique in that I have bilateral TN, TN1 on right and TN2 on left. It’s my TN2 side that’s resistant to the meds, and TN2 doesn’t have as high a success rate with MVD as TN1… So we’ll see…

I get quite nauseated on the Baclofen too…I’m not going any higher on it.
Talk soon, Mimi

Hi Mimi
Ok so what did the neuro surgeon say about the procedure has it got a good chance of working. How did they actually see the issue did you have. A MRI scan?
I think I will do one googling re this procedure I don’t think it’s done very much in uk .

I'm not going to make any jokes about "arch bars" being "the new TN energy food" Keep two in your purse at all times. Your day will be so much brighter

Foxy said:

Hi Mimi,
Yes it's good to laugh,so bill made both our days . Perhaps there should be a joke feed?
I am off to hospital to get my arch bars off tomorrow . So I may be a bit groggy after my general anaesthetic.
At least I should get a few hours pain free so that will be nice.

So medicines I take it most people on the site are taking medication similar to the gabapentin and amytrpline, neurotin etc . How long does it end to take before it gets in to your system and you start to reap the benefits?
Also has any one had issues with in tolerability with these types of drugs and what course of action have they tried
Mimi what have you tried in the past with good results?
Well I hope you have a good day today .
Take care x

Hi bill I take it you are the joker of the group;).
Yes arch bars are off and frankly don’t want to see them again not even in my bag.
My gem of a dr gave me some local anaesthetic into my face to help try and keep the pain at bay for a while. It worked but then I was p at 12 being sick and in pain. Never mind nice whilst it lasted.
How are you today?
Are you ready for Christmas? I am cooking again this year but I feel quite self conscious as I can’t eat too well and food tends to get stuck in my mouth well never mind keep smiling take care x

you are an amazing woman dear keep up the fight !! one day you will win ! hugs Al

Foxy:

WOW - I have heard of mannnnny sad stories on here - and many stories of resiliance - yours seems to be at the top of the list of the hundreds and hundreds I've read here

Is there a local support group for you - you can look on this link http://www.livingwithtn.org/groups/group/listByLocation?location=regional-group

-- we have quite a few here from all over the world.

You are inspiring : )