Help me Im scared

I have have TN for many many years, but was only diagnosed about 2 years ago. Mine started after a massive amount of dental work in a short space of time on my upper left jaw, root canals, a bridge extractions, infections you name it I had it done. I remember when they drilled through the bridge to relieve the pressure a massive amount of pus (sorry) poured out, seems the infection also got into my cheek bone. This was all 25 years ago when I was 30 and no-one diagnosed TN during this time. Local anaesthetics didnt work no matter how much they gave me and into this Hell they worked on my mouth week in week out. I remember begging them to extract all my teeth the laughed (honestly) and said they wouldnt remove "healthy" teeth. I had course after course of antibiotics often 2 different ones at the same time. In the end I could face no more and just said the pain had gone and had an upper partial denture made. No-one understood the level of pain I was suffering, painkillers (as we all know) didnt work and I couldnt understand why, I questioned my sanity. I was a single Mum who HAD to work, I somehow coped with the pain and eventually after about 6 months I realised it was easing. During this time I had a friend who called to my house some evenings she smoked Pot. I had NEVER taken drugs appart from prescribed ones in my life! She made me joints, I would smoke 4 or 5 and eventually go to bed in a daze and sleep till the next day when the roller coaster would begin all over again. Through the years whenever I have had dental work the pain comes back, I thought everyone suffered like this and honestly thought my pain livels must be really low, but didnt really believe that, I was the woman who drove 4 miles to the Doctors with appendicitus and left in an ambulance. 2 years ago I had my eye toth out on my left upper jaw and the the nightmare was back,the pain was truly unbearable. My dentist was lovely, I went back to see hi and was given anti biotics, no relief. A week later I took my daughter to a Dental appt the same Dentist took one look at me and asked how I was, told him the pain was if anything worse. I was sent to see a Facial Surgeon,then a Neurologist, MRI's later I am now seeing a Neurosurgeon ... I have seen 2 (didnt like the first one! LOL!) and heres my terror, I see him again tomorrow to arrange MVD surgery. I havent coped with the meds prescribed and cant take enough because of other meds I am on to deaden the pain. The thought of the surgery terrifies me, yet I know I can no longer live like this. My life has been reduced to making me almost housebound. I have pushed friends away as even conversations on a bad day are impossible. Good friends understand the others were never friends. I dont want to die, I want my life back. Please help me.

I'm sorry you've been through so much. For sure you want your life back and many of us feel that way or have at one point. Are you afraid of having the MVD? I've had one done and I was very scared about that, but I was afraid of what my life would look life if I didn't try. The surgery turned out to be much easier than expected and the recovery wasn't too bad. It's not a breeze, but actually been through worse things and sounds like you have too! Do you have questions? Are you like I was just freaked out that you are having brain surgery? How could I help?

Hi Curlysoo, my best advice is to read as much as you can about MVD. We have a great MVD group here ( located under the groups tab above) filled with many personal stories of our experiences with MVD.

Read everything with an open mind as we are each individual in our pain/journey with TN, meds and outcomes with procedures.



I was very scared too, but I have to say for me, knowledge was power…I devoured all info available online as well as from others who had already gone through it, so that I could make an informed choice.



I’ll see if I can find a list of questions I used as a guideline when I met with my neurosurgeon, I’ll post it here.

Good luck at your appointment,

(( hugs)) Mimi
Edited to add link to a site with great questions for your appointment …
http://neurotalk.psychcentral.com/thread2052-2.html

Hope this helps! Mimi

Its great that he is arranging MVD. Many people get relief from it. Keep us all posted about when that is booked for :)

I've definitely gone through times when I'd rather die than deal with TN so I completely understand. Different remedies work for different people but some of things that I've found helpful (aside from my prescription meds) are: magnesium 400mg daily, B vitamins, eating gluten free, cutting out chocolate and sugar, listening to meditation music. Stress and hormones make mine worse so its always worse during my period. When its bad its hard to imagine it will ever get better, but I do feel an improvement after taking the supplements and changing my diet.


I am calming down now Abby xxx Yes I am afraid of the whole term "brain surgery" funnily enough as a coeliac I already eat totally gluten free, I have also cut out all sugar so not eating any chocolate now :-( and I neither smoke nor drink isnt my life a bundle of joy! LOL! I will give those vitamin & minerals a go though. Thanks for the advice xxx
Abby said:

I'm sorry you've been through so much. For sure you want your life back and many of us feel that way or have at one point. Are you afraid of having the MVD? I've had one done and I was very scared about that, but I was afraid of what my life would look life if I didn't try. The surgery turned out to be much easier than expected and the recovery wasn't too bad. It's not a breeze, but actually been through worse things and sounds like you have too! Do you have questions? Are you like I was just freaked out that you are having brain surgery? How could I help?

Thanks Cleo ... I have had many xrays and MRI scans so dont think I have this, looked it up on "Wiki" and thank God I dont.



Cleo said:

Did the facial surgeon rule out maxillary bone necrosis?


Thanks Mimi XXX Following on from your advice I sat up for hours last night reading as much as I could about TN, felt MUCH better for doing so and wrote a list of questions out for the Neurosurgeon, I think he felt rather like he was sitting an exam! My daughter is an ED Nurse and fluctuates between have the Op and DONT have the Op, as soon as I mentioned where Emma worked (St Vincents in Sydney) the Neuro said well of course she will understand the benefits of having the MVD ... I explained to him that her seeing the benefits for a patient was very different to her Mum having the Op. However I have agreed to go ahead, because I think its the right way forward for me, and even filled out all the admission forms. Emma has booked tickets to see Madame Butterfly staged in Sydney Harbour and stay at a "posh" hotel before and after and hubby John wants us to go away for a few days over Easter so Im looking at the end of April now. The Neurosurgeon was looking at admitting me in the next couple of weeks but I have put up with the agony that is TN for so long a few short weeks will suit me fine. TN has stolen my life!!! and I am going to get it back!


Mimi said:

Hi Curlysoo, my best advice is to read as much as you can about MVD. We have a great MVD group here ( located under the groups tab above) filled with many personal stories of our experiences with MVD.
Read everything with an open mind as we are each individual in our pain/journey with TN, meds and outcomes with procedures.

I was very scared too, but I have to say for me, knowledge was power....I devoured all info available online as well as from others who had already gone through it, so that I could make an informed choice.

I'll see if I can find a list of questions I used as a guideline when I met with my neurosurgeon, I'll post it here.
Good luck at your appointment,
(( hugs)) Mimi
Edited to add link to a site with great questions for your appointment ..
http://neurotalk.psychcentral.com/thread2052-2.html

Hope this helps! Mimi

The supplements seem to help me as well. My acupuncturist guided me towards Vitamin D3, B12 via a complex B, as well as Magnesium (this helps me sleep finally). It makes sense that something which helps the nervous system might help TN. It has been slowly helping my overall well being which is so critical to keeping us as even keel as possible. I look at caring for my TN in layers and every one helps.



KiwiTN said:

Its great that he is arranging MVD. Many people get relief from it. Keep us all posted about when that is booked for :)

I've definitely gone through times when I'd rather die than deal with TN so I completely understand. Different remedies work for different people but some of things that I've found helpful (aside from my prescription meds) are: magnesium 400mg daily, B vitamins, eating gluten free, cutting out chocolate and sugar, listening to meditation music. Stress and hormones make mine worse so its always worse during my period. When its bad its hard to imagine it will ever get better, but I do feel an improvement after taking the supplements and changing my diet.

I agree Shadow2 - figuring it out a bit at a time is the way to go.

I also take a complex B. Some people rave that B12 is the answer, and others say B6, so I thought its easier to just buy the complex B that has all the B vits in it. Vit B is apparently really helpful for stress, and since TN causes stress then its another good reason to take vit B.

The magnesium is wonderful for sleep. I take a sleep vitamin which according to the ingredients is basically just a magnesium supplement. My daily multi vit also contains magnesium and B, and I have a bottle of magnesium on its own for the bad TN days.

I take fish oil and I also relax in the sun daily to absorb vit D. Interestingly, many people take oil supplements to help TN, so fish oil might be helpful for two reasons (the oil and the vit D) but you have to check the fish oil contains vit D (cod liver oil does so it depends which fish oil you're taking or whether it has added vit D).

I started following a gluten free diet after reading that other pain conditions such as fibromyalgia are improved by gluten free and low oxalate diet (gluten is very high in oxalic acid). Cutting out gluten was easier than I thought :)

Think of it this way…cranial surgery…not actual brain surgery.

: )



Cleo said:

Glad to hear that's been ruled out. MVD would not work if you have that issue going on... Good luck!



Curlysoo said:

Thanks Cleo ... I have had many xrays and MRI scans so dont think I have this, looked it up on "Wiki" and thank God I dont.



Cleo said:

Did the facial surgeon rule out maxillary bone necrosis?

Oh my God! Im both a single mother and a teacher. This condition is hideous. I am desperate for a more permanent solution, doctors say im too young to attempt MVD. Take the opportunity I would. Im sending you love and prayers x

Hi Curlysoo,

I can't speak about the MVD because I don't qualify. But I can tell you I understand your story. The dental disasters, which I believe caused my condition, the removal of teeth hoping that would stop the suicidal pain. I want my life back too. I can't eat food. I am housebound and without friends. Narcotics do alleviate some of my minor pain, but my brain is degenerating from lack of life.

I wish you the very best and wanted you to know that I feel for you. Best luck to you.

Oh colleen I’m so sorry for your pain. I’m sending love and prayers x


I feel your pain Colleen, I think we ALL understand the isolation this cruel disease brings upon us. I only wish this agony had been given a name to me years ago then I could have begun to fight back. TN has slowly but surely stolen my life from me and left me almost reclusive when the pain is doing its damndest. I am determined that this MVD WILL work for me and I can go back to being ME again! I dont know why you dont qualify, but surely there is more that can be done appart from prescibing you opiates??? I am thinking of you, I cant do any more ... but maybe a hug wil help even a little bit? ((((Colleen)))) xxx


Colleen said:

Hi Curlysoo,

I can't speak about the MVD because I don't qualify. But I can tell you I understand your story. The dental disasters, which I believe caused my condition, the removal of teeth hoping that would stop the suicidal pain. I want my life back too. I can't eat food. I am housebound and without friends. Narcotics do alleviate some of my minor pain, but my brain is degenerating from lack of life.

I wish you the very best and wanted you to know that I feel for you. Best luck to you.