Trigeminal Neuralgia Procedure

Hi Ron,

mate it sounds uncomfortable especially sticking stuff up your nose but if you get some relief it’ll be a good thing.

keep us posted mate hopefully you will get less pain it’ll be a good thing 

Johnno

Hi guys, well i had my telephone consult (probably one of the worst I've had) but I did it, I told the clinic nurse that the pain in behind the right and upper cheek had eases to a level of " I can stand that but at times it gets to - get me my gun".

There is still no change with the pain in lower jaw, I enquired as to weather or not this procedure could be repeated hopefully to try to get relief from the jaw, I was told that I'd have to see the doctors about that and I had an appointment for the 20th January 2023. My GP threw her arms in the air and said " so what do we do in the meantime", I told her that they're going to write to her. At this point of time everything seems be up in the air, I asked for another appointment but I have one on the 20th Jan 2023, all we do now is wait, I suppose.

I would be more than pleased if they would just either sever or burn the Trigeminal nerve and have it over and done with, 11 years is a long time to have this pain 24/7, fingers crossed.

When/if I hear anything I'll post something up.

Ron

Posted by: Ronald Perry

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Hi guys, well i had my telephone consult (probably one of the worst I've had) but I did it, I told the clinic nurse that the pain in behind the right and upper cheek had eases to a level of " I can stand that but at times it gets to - get me my gun".

There is still no change with the pain in lower jaw, I enquired as to weather or not this procedure could be repeated hopefully to try to get relief from the jaw, I was told that I'd have to see the doctors about that and I had an appointment for the 20th January 2023. My GP threw her arms in the air and said " so what do we do in the meantime", I told her that they're going to write to her. At this point of time everything seems be up in the air, I asked for another appointment but I have one on the 20th Jan 2023, all we do now is wait, I suppose.

I would be more than pleased if they would just either sever or burn the Trigeminal nerve and have it over and done with, 11 years is a long time to have this pain 24/7, fingers crossed.

When/if I hear anything I'll post something up.

Ron

 

 

Damn, it's really disgusting to wait almost 4 months for a doctor's appointment. You wrote on October 9 and the consultation is for January 20. Doctors don't think much of your pain! I'm sorry, man.

Hi Ron, I too am suffering from Tri- Geminal Neuralgia. Mine is from nerve or radiation damage after a Tumour in my neck. As it basically was almost terminal, they gave it everything over the 35 treatments. But no one can say if the Myelin sheath of the Tri - Geminal Nerve has been damaged by the Tumour or the Radiation?

I am just looking for some relief. Prior to the removal I was on opioids right up to when they put the plug in My stomach for feeding, they must have moved something as the pain went miraculously right over the treatment period of seven weeks. It returned ever so gradually so I did not report it until it really started to pump about 12 weeks after. Since then it has over the past three years varied upwards mainly until now it is getting like pre-treatment.

I am on over the counter stuff long-acting paracetamol and Ibuprofen as well as Script Meds like Lyrica 25mg 3 times a day and Duloxetine 60mg twice a day. All this makes jack a very dull boy. I am interested in getting some info on the procedure you had and if it lasts and what kind of success rate? 

If you can help thanks mate.
Noel

Hi Noel, sorry for being so damn late with getting back to you, this Trigeminal pain's really knocks you for a 6 don't it mate.

I'm happy to inform you that I had my Jan 20th pain clinic appointment, what they're planning on doing is to slaowly wean me off Palexia over a period of time only then will they discuss putting me on a replacement drug, Palexia is the only drug I'm on that has any effect on reducing the pain level at all, Endep and Gabapentin help but not much. I told them that the pain level in the upper cheek was increasing again, their reply was "get back to us when it's back at the old pain level", I asked about the Trigeminal pain in the lower jaw "like a mouthful of toothache all the time", their reply left me gobsmacked, "as the Trigeminal nerve spreads out like fingers we doubt very much that we'd be able to find the right nerve". They have been telling me for years that they COULD arrest the pain on the lower branch of the nerve and now they say they can't do a bloody thing to help me, then they turned around and said "we'll see you sometime next year."

My nerve pain is like yours caused by radiation scatter (12 weeks of the good stuff), when my wife and I had a meeting with Radiology Dept at the hospital my radiologist told us straight that the nervous system was not his department got up and walked out.... I'm on Duloxetine 60mg myself I used to take Lyrica as well but it took me to places that I didn't want to go, after I told them I refuse to take to take Lyrica they put me on Mexelitin, it is not in the doctors drug book, it can only be obtained from the pain clinic at the hospital who get it from overseas somewhere. The meds I'm on is a real cocktail Noel, the pharmacist at the hospital told me the she has made up some good mixtures but mine would have to be the best, she doesn't know how I'm walking around and doing the things I do, she reckons that I should be near on bedridden. My daughter is the NUM at the local hospital here and has gotton on to a pain clinic on the Gold Coast, unfortunately it is private but they do have different plans so I'm going to get on to them to see how things go, the doctors and staff are all pain specialists, when I see what they can do Noel I'll let you know mate, and this time it won't take so bloody long - fingers crossed.

I know it's damned hard Noel, but keep your head up mate.

Ron.

Hi Ron,

Thank you for sharing your story and unfortunately your difficulties,  if anyone out there has suggestions or want to let Ron know that he is not alone please do so.

Nerve pain is very difficult to treat and affects people in different ways.  Please keep in touch and let us know how you are going.

Liz

Hi Ron and Noel

I have chronic back pain and neuropathy in both legs and left arm.This doesn't come close to you guys but still very painfull.

I feel for you as my gp does the same they don't know what to do or understand the levels of pain we are experiencing. 

As for long waits I'm regional so no specialist so I made appointment last November and saw neurosurgeon in 10 march .It just makes it so hard being left in limbo not knowing what is next.

I use palexia Max dose gabapentin and duloxotene but I have found that if I use the nervoderm patches as well I can get a little relief from pain level 9 down to 7 and only for a short time.

Wishing you all the best and hoe you get some relief 

David

Hi David, good to hear from you

I like you know the dramas of what it's like dealing with medical professionals whilst living in what is called "rural/regional/remote", we have no visiting specialists who deal with neurological issues so we have to request an appointment then travel, if it's a late appointment then that means an overnight stay adding more cost to an already expensive experience.

Being weaned off of Palexia is interesting to say the least, whilst decreasing Palexia by 50 - 100mg per month they have increased Endep intake to 150mg per night along with all other meds, what can I say other than that "Boy am I smashed at night", luckily this eases off toward morning in time for my normal cocktail of meds.

In my last post I mentioned a pain clinic in the Gold Coast, this should have been the Sunshine Coast, there's another clinic in the city of Brisbane, does anyone out there have any info about the clinic, I think it is called Trigeminal Neuralgia Centre, I do not know for sure so should anyone know of it or other clinics please drop me a line as this pain is starting to get more serious than it has ever been.

Regards,  Ron.

Hi Ron 

Sorry for such a late reply. Pain has been through the roof of late.

Hope you are doing better than when we last spoke.

I have to have the neck surgery but they are saying it won't fix pain pain needs to be done for stability. Might even increase pain levels in which case I don't know what I will do as I'm maxed out on pain killers. 

I know it's a pain travelling for  docs and night stays are expensive in Newcastle or Sydney and I expect Brisbane is no different. 

Hi there David,

I've been ignoring this site lately due to health issues, for that I am sorry David.

Gee mate that neck surgery don't sound good, as if you don't have enough pain to live with, however David if the surgery will give you a stable base to work from maybe it might be a positive thing, I don't know mate as pain is such a personal thing as you would know just hope that the pain level isn't increased, they'll have to revise a bigger scale, on the goes well passed 10 for pain level.

I don't live anywhere near Brisbane mate, should've told you before, we live in the north-west of QLD in a place called CHARTERS TOWERS, it's about 120 klicks west of Townsville but we may as well be in BIRDSVILLE. The doctors here try their best but maybe their best isn't good enough, the hospital doesn't want you going up there, you have to find a GP that will have you on list, then hopefully they bulk bill, I'm on the aged pension and the only doctor I can get to see has a $55 fee and that depends on the length of the consultation, go over 10 minutes it'll cost you $110. gets bloody exy.

When I was 20 odd I started having epileptic grand mal seizures, these carried on till I was about 30 or so, they don't know what caused it to happen and don't know why they stopped, well guess what, I've started having the seizures again and the part I don't like are the falls that go with the fits, they've put me through heaps of tests but am awaiting the results of latest lot. Plus all the driving back and forth to T'ville wrecks me, my wife drives everywhere so I've got no worries about throwing a "wobbly" and killing someone, like you David, something else to worry about. Let me know how things go David and I'll try to be a lot faster getting back to you.

Regards Ron

Gday Ron,

sorry I’ve been out the loop if you do a search here trigeminal neuralgia centre brisbane you should find some help.

cheers 

johnno

Hi there, Ron here, been a few weeks since I last posted anything so here goes.

Johnno, thanks for the info on the neuralgia centres down there in the big smoke, wasn't having much luck getting onto these centres so I got onto my GP and give him a bit of a ear-bashing again, he found one called Metro North run by Queensland Health but you had to live down Brissy way to get in. After looking on his laptop,th he told me that there was one in T'ville, with the Neurology dept' at the T'ville Hospital with a visiting specialst so he sends them a referral and told me it could take up to 90 days to get in -(if I was going to be seen).

Within 2 weeks I had an appointment and saw a doctor about a week and a half later, he sent me for an MRI with 2 types of contrast to see if there was anything between the ears and 2 weeks later I went back to see them again which was the past Wednesday 19th of July, he showed us the images and explained that there was nothing pressing on the TN #3 however there was large amounts of radiation damage to that lower nerve and no amount of neurological operations would fix the problem. I had a phone consult with the Pain Clinic Friday (yesterday 21st July) the doctor was quizzing me about who referred me to neurology, how I got seen so fast, what they had to say, she had all the relevant info in front of her but told me there was 1 drug left to try and she'd get onto their pharmacy to see if this drug would clash with the ones I'm already eating, if all is well they'll get onto my GP with a script to trial.

She informed that this was that final thing that we could try, there is no more medically that can be done. what I have is what I have, they'll keep me under observation so to speak also should the cheek pain return all I had to do was ring them and they will do that block I had before - that's the one up the nose but as I found out this aggravates the lower nerve and off we go again.

I'm not a happy chappy to say the least, I've tried everything and been through the wringers, here we are in the 21st century where they can transplant just about anything but Trigeminal Neuralgia seems to chuck a spanner in the works, I think it'll be waste of time complaining about it and just try to get on with trying to live with it. The biggest problem I've been having is all the negative thoughts, I know there's stuff and people out there who maybe able to help but this is like being kicked in the guts bigtime.

Mate that is a better outcome than no outcome at least you had the speed and the best help you , hopefully the new medication will help to reduce some of the pain , I’m sorry you didn’t get any better news but at least you have an idea and doing a pain management course can obviously help you in some way .

sadly a lot of people go through life in chronic pain and never get a decisive answer in any way or form .

stay strong and just remember every day you wake up is a great day 

Hi Johnno, sorry if I sounded like I was feeling sorry for myself mate but I was just completely jacked off with the system, all the travelling, finding accommodation thats without the cost of everything on top. Suppose I'm lucky in that it only took 12 years to get an answer as to what's been the problem, now for the latest, I've had a phone call from Neurology at the hospital, a team meeting has happened and the results of my mri scan showed that a fair amount of radiation damage has occurred to the trigeminal nerves and also the nerves in the neck.

I was told that there was no neurological operation that could be done to rectify the damage and was then discharged from that dept' back to the pain clinic who then informed me that the drug they were looking at trying is not suitable due to clashing with the drugs I am already taking, I was also informed that should the pain reoccur behind the eye and in the cheek I was to contact the pain clinic to book in for the nerve block that they do up inside the nose - that will be a no-no as the neurologist said it was this nerve block that aggravated the lower tri nerve and should be avoided. So that's it in a bag, I now know why, I know when and how, now I look at ways to handle it.  As my daughter (CN Nurse at the local hospital) tells me, dad, what doesn't kill you will only make you stronger.

I know that there are many more people out the worse off than I am, if I can help out let me know...