So over the last say 5 years i have had to have dental just like anyone else, but as a kid i used to always have accidents etc, and i smashed my front teeth. Over the years i had to have white fillings as a replacement but of course they would never last, and the pain because of my AVG in the mouth area during and after dental was bad, i would also feel huge pulsing when they would inject the nova.
In my mind it was wiser to just take them out, i had asked and asked for years more than one dentist, explaining my situation. One said they would remove them but felt i was taking drastic action, in their mind, but not mine.
I had all top teeth taken out and had to endure major dental surgery also as they had probs removing my K9s. I was in a mess again, anyway time passed but my lower were still in place and doubt they will ever be taken out. As i used to have huge bleeds from my gums after surgery i had years previously within my lowers. I have explained this to dentists in the past and none will go near them, i have also asked for referals to have something done, but i have been waiting years.
Think i would have to be reffered to max fax, as well as the dental at hospital in order to have them removed its that bad a situation with the bleeding from below the gums.
But in the meantime i have lovely A1 top teeth, i had a custom denture made which cost me quite a bit as the one i was given was laughable. My lowers are actually quite good and maybe one one shade away from the perfect tops.
But as time goes by i just know this will be an issue in the future, if my actual AVG doesnt catch me first.
So now i will go through the same pain staking asking doctors who will then tell me it must be the dentist that refers me and the same round and round continues. I am a big believer in being pro-active as apposed to reactive but these guys just dont wana touch me but if they leave it much longer and i do need lower dental they aint going to be able to do anything.
At least now i dont have to deal with the constant replacing white front fillings which never last as well as the pain in having them done.
For me it was the only way forward, but it took years to have done as even dentists just didnt understand the situation very well.
I had them done say 7 months ago and it is a constant process untill my mouth totally heals. Reline after reline but i am a lot happier with my smile. For years i would hide my mouth due to my huge AVM and in the final years before they operated using Onyx to attempt a debulk, which removed quite alot of my lip, i can now kinda smile with pride. Well more than i did.
But it took years to explain this to anyone, they just didint understand how bad my own situation was and how it was affecting me.
I never forget the sheer amount of people who would ask me before the debulk, what has happened to your lip/face etc. Everyday i would get this to the point i was just ignoring people.
I still get this to a point but its more because the swelling or redness ( blood ) has shifted, but luckily not nearly as bad.
I am smiling again.
Am going to post up some facial pics before my AVM started, when it was really bad, when surgery was just done and now.
Think people will be amazed to be fair.
I had been having neuro symptoms for many years, but they were all written off as growing pains or hypochondria or imaginary, after all of that I learnt just to shut up and say nothing. I was till having these oddball symptoms but no medico could figure out why (and once you’ve had a psych diagnosis, well, everything then gets labelled a psych issue). So I ignored it all. A few years pass by, I’m driving down the road and the lights go out. I can’t see. I go see the dr, he sends me to the surgeon. Surgeon operates and says ‘All fixed’, only it wasn’t. They operate again and again say ‘All fixed’. But again, it was not ‘All fixed’. So I query if it’s all fixed then why am I having these symptoms. Then came the ‘Ohh it could be …’ or ‘It might be…’.
One of the big things was dental. So I had all of my top teeth removed, my symptoms continued. ‘It might be your eyes…’ so I got glasses. My symptoms continued. I’ve trialled all sorts of treatments/remedies/suggestions but none of them have been my ‘key’. I’m still hunting for my ‘key’, some have been lucky enough to find theirs easily, but for some of us it’s an ongoing hunt to find what works best for us.
Merl from the Modsupport Team
That must be very difficult, not knowing exactly.
I do feel many professionals can’t or don’t know, the people who have operated on myself specialise in embolization but not AVMs so in my own eyes winging it to a point hoping for the best.
I get exactly what you are saying, I have been looked at and probably labelled as extreme in my thoughts when explaining because mines isn’t as visible anymore.
They just don’t get it, I really had to fight with the removal of top teeth.
I hope you find your key, I really do.
Can I ask why you had to have your teeth removed.
And I agree. They often profess to have ALL of the answers, but they don’t seem to have mine. I’ve had more pseudo diagnosis than I can count on my fingers (and toes) and I’ve followed through with their suggested treatments but I’m still on a merry-go-round of symptoms. I just have to manage the best way I can.
One of my BIG symptoms was ‘facial pain’. I’ve often explained it as ‘…someone shooting a steel bolt from the back of my skull out through my eyeballs…’ my face droops, my right eye closes up and I see bright, coloured stars floating in my vision. The neuro’s says ‘Well, it’s nothing I’ve done… …it must just be YOU…’ which wasn’t very helpful. ‘It may just be your teeth…’ So he gave me a referral to the hospital dentist. I went to the dentist. The referral was made as a bit of a ‘We operated, we fixed’ statement, confirming it was not neurological as far as they were concerned. Part of the thoughts was that a previous dental extraction may have triggered a pain reaction in non related teeth and as my pain issues were focused on my upper jaw the decision was made to remove my upper teeth. The pain continued.
There was a fair bit of chatter about ‘it could be this or it could be that’, trigeminal neuralgia being one of the repeated theories. I also saw an ophthalmologist and although he was fairly blunt in his assessment, it was probably as close to an answer as I’ve received. His response was ‘Well you’ve had brain surgery…What did you expect?’ What I didn’t expect was THIS!!!
I’ve now had 6 neurosurgeries and have a shunt (a plastic drain tube) inserted into my brain. The shunt has had it’s own issues and I’ve needed a couple of external surgeries (non-neuro) to manage that. So although the initial surgery was to fix things, it’s unleashed a plethora of issues, with very little in the way of answers.
Merl from the Modsupport Team
So as promised and trust me I hate posting pics but here goes.
I still have pics to post of just before surgery of just how bad things were, but for now here is me before the AVM was visible, of course it was known I had one but was not really obvious.
The others are just after embolise and debulk surgery, stitches burst the next day.
And kinda where I am at now, but got my hair back now ha ha.
One other is what happens usually when I brush my lower teeth, I know it ain’t great to look at but this is the reality of the situation. This bleeds from my gums because of AVM.
Pics of before and also after stitches burst will be the next I post, it ain’t for the faint hearted.
The bleeds you see are as mentioned from my lower gumline.
It’s been years since my surgery but still this happens and still my dentist just doesn’t get it.
I have mentioned time and time again I really can’t have any work done on my lowers because if this is what happens brushing imagine doing even the most basic dental work.
I asked them to refer me to maxio facial and hospital dental, as it stands I have now been waiting 2.5 years and the clock is ticking, because in my mind the longer this is left the more chance I am going to need dental work if not extractions which can only be performed within a medical facility incase I bleed out .
Chances are they won’t ever work on them.
I’m rubbish with blood, so I was bothered at needing to look!
There’s an interesting balance between enabling you to share your story, sharing stuff that will help other people and ensuring that the site lives up to its purpose of being accessible to people as young as 12 or 13. To me, these are unpleasant but not horrific (to me as an outsider; I can imagine it being horrific for you).
If anyone else has views on whether this sort of share is important or not really ok, I’d like to hear them. For me, this is ok. It may not be for everyone. I’m interested in views.
Have since changed my lack of understanding dentists many times and the latest ain’t much better.
I mentioned again all the issues and they went ahead and booked me for the hygienist££ for a scale and polish, but they made sure it went through privately which could be done the next day.
I had just recently had all my top pulled and cost an arm and leg for work and custom private denture, so wasn’t keen on this latest suggestion. Let alone I cant really have much done here.
I asked why they had booked privately and the answer was that the hygienist does a more thorough job, which I added I can’t do because of AVM/bleeding. So now I have to go for the bare bones NHS treatment which isn’t so involved hoping I don’t start bleeding. But I also have to be put on a waiting list which I was told could be at least another 6 months.
Oh well not like this is anything new, I will prob have it done, will start bleeding and then and only then will they refer me. Again back to years of waiting for proper treatment.
Thee only reason I mention all this, is because I feel it is an absolute joke how we are treated. This is the reality of AVMs in my country, what to expect and lack of understanding and treatment.
I totally understand Dick, I really do.
And am sure people realise that the reality of our situations and conditions are very real.
But of course the only way to become more aware is to understand the harsh reality in all its many forms that present themselves to us on a daily. I do understand this may be graphic to some, this is the reality of such conditions. I totally respect whichever way you decide this type of content to be shown.
I would imagine that most of us suffering this more likely know more about our conditions than many medical pros.
Sometimes it is really important to dare to share. Someone else posted a really quite graphic photo recently (and that may cause a similar discussion) but I know that person well enough to know it is important for them to dare to share it.
You’ve provoked a line of thought for me and it is interesting. There’s never a perfect balance.
I can 100% see where your coming from.
I am pretty sure as a forum there may be guidelines, but in the day and age of info online some can access far worse.
Defo an intesting debate for sure, either way I understand and will respect your decision
My wife watches alot of pimple poppers and many extreme surgeries that are on TV regular, personally I really can’t watch them but she loves it. Goodness know why but I leave her to it
Personally, I don’t have an issue with it myself.
I have posted images of my own skull post-surgery elsewhere, with all of the swelling and staples, on another site, and some people were quite shocked. But being that we are a health/rare conditions network, I think sometimes seeing what others are trying to manage can give others some perspective.
Like I say, that’s my personal view.
Merl from the Modsupport Team
It’s definitely a debate.
I can watch people suffering from many things such as cancer, starvation, wars to name just a few, on ads, documentaries, news and various MSM outlets, all before watershed 9.00pm.
I suppose it makes people more aware of their conditions, plights and situations but ours is tricky.
I duno I really don’t, but if it’s good enough to put quite graphic pics on packs of cigarettes, and am sure in time this will happen with certain foods that can cause conditions it’s only a matter of time, then who knows.