Help! I feel lost, and broken down

Hi,
Whilst I understand your concerns,


Whilst meaning no disrespect to the pioneering DRs of MVD, one of which has recently passed away, who have helped many, MVD.....;


There is no evidence vascular compression causes TN, only that the PROCEDURE may help and has various elements,
Proposed vascular compression of the TN peripheral nerve follow few rules of any other peripheral nerve compression,


Folks are shown to have vascular compression and no TN symptoms,


Why isn't vascular compression of extra-cranial nerves not seen as a problem,


The right side is more affected, when the left has a larger nerve root,


MVD doesn't help a lot of folks,


The trigeminal nerve root has its own internal blood supply including an arteriole, yet an artery outside of it is said to be the accepted cause???


Remission is put down to remylination of the nerve fibres, yet circa 30% of the nerve fibres in the root are unmylinated,


Medical intervention at the neck- nerve blocks have helped folk, which doesn't address vascular compression,


Dental intervention/ procedures are stated by patients circa 30% accordind to RED's survey on this site, as the route cause of certain cases, they don't cause vascular compression at the nerve route,


A lot of folk circa 30%+ state postural issues affect their TN, but less reported are things that would have a more direct affect on blood pressure, and hence vascular compressions at the TN nerve root,


Many people have additional syndromes e.g. Migraine for which MVD is not a procedure, but share a common mediator at the spinal trigeminal caudalis situated in the neck, recent research shows a connection between the two.


A number of folk are diagnosed with TN, with additional symptoms which overlap with other head/ facial pain complaints; occipital neuralgia, migraine, tearing, swelling, inner ear pain etc. the common denominator- not vascular compression at the TN root


Individuals do exhibit other cranial neuralgias which show a common neuronal connection in the nucleus mentioned above. Have they also got vascular compression on these nerves that occur no where outside of the cranium? yet they have a connection, these cranial nerves, in the spinal trigeminal nucleus,


Some people, and research, as with the above, has shown a connection, have one of many autoimmune diseases, many of which have musculo-skeletal implications acting on the spine and joints, where the spinal trigeminal nucleus sits.
"PERSONNEL opinion, vascular compression (AVM's, chiari etc., excluded ) as told doesn't cause cranial nerve neuralgias.


As time goes on, even the weekly research as stated on pubmed, the likely hood of vascular compression causing TN would seem less and less likely, or at least it adds a great big question mark."


In summation, all avenues should be investigated before destructive procedures.


Present day, if not sorted G.P. >>Meds>>Neuro>>>Meds>>>neurosurgeon>>>needle/ knife/ nasty drill, far from the ideal situation.
Some would argue for evidence based medicine, how much evidence- none before the first MVD's were carried out, My belief is that the spinal trigeminal nucleus was not even identified before Dandy proposed the theory of vascular compression at the TN nerve root.


I'm sorry you and your husband are going through this understated ordeal, but a possible trigger of a biceps surgery would not seem to correlate with vascular compression, although I obviously don't know the cause of his biceps problem a poor nerve supply to the tendon from the neck can cause injury.


Wishing you and yours well.

Iā€™ve had a long ordeal in properly diagnosing my condition. Iā€™ve had a MVD, and glycerol rhzyotomy. Iā€™m on 40-60mg baclofen, 2400mg of gabapentin, 400mg carbomazepine, 100mg topiramte on a daily basis. I am still getting breakthrough pain. I went to anot her specialist at Cedars Sinai in Los Angeles who acurately diagnosed me with cluster headaches. I began taking verapamil in addition to everything else. It helped. I received in occipital nerve block it also helped a little. Since Iā€™m diagnosed with both cluster headaches and TN treatments are tricky. I did just read, and have heard from a friend that works for Boston scientific that neuro implants eliminate nerve pain without side affects and allow you to go off medication. Anyone know more details about neuro implants?

FYI that might be important to you, I was active and over time muscular activity would trigger and event. I could be doing arm curls, then two days later BAM. I could do a plank then later in the day BAMā€¦

Those activities cause a cluster. Having the blocks help. I would know if it was a cluster when I would breathe oxygen from a tank and it would stop. I would know If it was TN when oxygen and no relief. I learned my TN was on ly lower Jaw and my cluster was upper. Takes time.

I just keep getting back to neuro stimulators being effective for both then why not prescribe? No major surgery needed.

Try to be as specific as you can and learn about your pain. Where is it exactly on your face. Does your eye tear or water during attacks? Thats important. Thats indicitive of cluster. Exactly what type of pain is it? Burning, stabbing, or electric shock. All of those things are important. At least they were for me. Your neuro should help. Some primaries do not know much about clusters or TN.

I know exactly what your husband is feeling. I empathize. He can help you by trying to settle down from the pain shock. Breathe through the belly. Unclench his fistsā€¦try to breathe through it. The pain ends. I hope your church comes through for you financially because this pain is beyond words.

Hopefully they will find something on the mri that show a vascular compression or something that is treatable. Iā€™ve done the MVD. It ainā€™t easy but itā€™s worth it. At this point, Iā€™d look into neuro stimulators. Much less invasive.
I feel for you. Iā€™ve only recently realized how much this has affected her (my wife)

Our church family was invaluable. We could not have made it without them.

God bless

Hi Andy,

My husband cant handle the anti-seizure meds, he has had allergic reaction to them. The status we are at now due to the neurosurgeon we are with (who doesn't specialize in facial pain, smh, we've been through so many hands we are lost and hesitant as to what neurologist to even choose to go to) is diagnosing him with atypical facial pain which is basically saying my hubs is making his pain up all his head. This neurosurgeon does not believe there is no such thing as atypical trigeminal neuraglia and only believes there is classical even though there is tons of articles that state otherwise. He is currently treating my husband with percocets, oxycontin XR 20mg, and prozac. The prozac we ripped that rx up. Thats not the correct anti depressant he needs, we told him we wouldn't him to try elavil and he said that stuff is crap not to try it. The pain meds are only helping 50% of his pain. He does have the constant burning on Right side of ear, neck, face, with constant throbbing, and electrical shocks/shooting pains to his right eye that come every other hour to every other hour depending on how stressful his day has been. Since this has all started his pain has always been constant, 24/7, never has come and gone, and nothing has helped except the pain medication which only helps him to be able to function at work and gets him by, he still feels his shooting pains and burning on his meds. another thing is the right side of his face stays swollen and seems to get worse as time goes by without any treatment.

He had an occipital nerve block done yesterday with no relief. We are seeing a pain management doctor friday who can hopefully get us on a pain therapy regimen that will help him. I do not agree with oxycontin and percocets, all they are doing is masking his pain and not getting to the root of the problem. He needs a medication to slow down the damage of his nerves or whatever is going on in that area. he is also on lyrica and that is way better than the neurotin, so it is helping some but not getting tremendous relief with any burning.

Our next step is going to a specialist who specializes in trigeminal neuraglia in Arkansas. It seems to us there is a good possibility he has type 2 TN. I'm not an expert so I don't know. And I'm totally open to hearing other options but It doesn't sound like cluster headaches to me for the main fact that his pain NEVER goes away.

My husband has never had any health issues other than H. Pylori, thickening of his blood (due to high testosterone) which he donated blood to normalize, this could be the cause of TN, swelling vessels in the brain and compressing the nerve, however the MRI showed normal but it wasn't a 3D Fiesta MRI done either, just a regular MRI with and without contrast. He recently had tore his bicep tendon and had reconstruction surgery done October 9th, and immediately coming out of surgery, he told us and the surgeon his whole right side of his body felt numb and strange. The surgeon seemed aggravated and wasn't comforting or willing to talk to him and how he felt and told him in a agitated way it was side affects of the anesthesia. It was all very strange how he was being. Ever since the his surgery though he has had problems with his right side of head and pain. we dont know how but somehow his pain has to be related to his surgery, possibly something happen in surgery that we dont know about or something weird happens when cutting on nerves?? My husband does have problems fighting coming off of anesthesia but this was told to the surgerons before hand. During surgery prep, they told he would be in recovery for 15 mins but they kept him for an hour in a half. When they finally brought him out, we asked if everything was okay, and they said everything was fine. However thats when the Doc seemed agitated and not wanted to communicate with us. I don't know. Eager to find out more info and get our hands on his surgery records.

We are trying to avoid going down the road of barbaric procedures, and trying procedures as a trial and error. I wish there was something that was tried and true that was guaranteed. So much for wishing lol. The MVD seems to be more safer and with a more success rate however I have read stories where it didn't work OR people have had it done and came out with worse problems. I know it all depends on whose hands you trust your life with, thatswhy I am doing so much research. This arkansas doctor has a 96% success rate, and he only will operate on potential candidates he thinks will be successful surgery and be pain free. Of course there is always the possibility of complications.

I have read up on the stimulators, from what I read it is successful but the patient still feels a tingling sensation 24/7. Which in my opinion would still be aggravating, with that being said, I'm not the one going through this pain, so one might choose to feel tingling sensation 24/7 then to be in debilitating pain constantly. In your situation being MVD hasn't worked for you, (so sorry to hear this! I know how exhausting all this can be) I would def try the stimulator! If it takes away your pain, you cant go wrong with it. with the tingling I'm sure that is something a person can get use to and it can become so normal they forget about it.

Thanks for responding and sharing with me. Our church community, family and friends have all been so supportive! Without them I would have lost my sanity. I have learned so much just with this support group alone and I think that this is just an amazing group of ppl.

My husband's condition has stripped our lives away from us. Everything has turned upside down and nothing is normal or as it use to be. There is no joy in everyday life. I find my joy in church and my bible. Everything else has been about his condition and has completely consumed my life. I don't know why it has been so hard on us but it is almost as if we have had bad luck, the bad draw of doctors, and we have had to fight everyday for 7 months to actually hit road blocks everyday with every doctor, even still to this day. But we will continue to fight and have hope with the Lord on our side I know He has a reason and a purpose for all this and I know he will pull us through. As wives its hard seeing our husbands hurting, and it affects us so much. My husband eventually quit telling me how much pain he is in bc he didn't want to worry me, but he didn't have to bc he wears it daily.

hugs to you and your family and GOD bless you!

Jonah 2:6

To the roots of the moutains I sank down; the earth beneath barred me in forever. But you, LORD my God, brought my life up from the pit.


Andy Rackerby said:

I've had a long ordeal in properly diagnosing my condition. I've had a MVD, and glycerol rhzyotomy. I'm on 40-60mg baclofen, 2400mg of gabapentin, 400mg carbomazepine, 100mg topiramte on a daily basis. I am still getting breakthrough pain. I went to anot her specialist at Cedars Sinai in Los Angeles who acurately diagnosed me with cluster headaches. I began taking verapamil in addition to everything else. It helped. I received in occipital nerve block it also helped a little. Since I'm diagnosed with both cluster headaches and TN treatments are tricky. I did just read, and have heard from a friend that works for Boston scientific that neuro implants eliminate nerve pain without side affects and allow you to go off medication. Anyone know more details about neuro implants?

FYI that might be important to you, I was active and over time muscular activity would trigger and event. I could be doing arm curls, then two days later BAM. I could do a plank then later in the day BAM....

Those activities cause a cluster. Having the blocks help. I would know if it was a cluster when I would breathe oxygen from a tank and it would stop. I would know If it was TN when oxygen and no relief. I learned my TN was on ly lower Jaw and my cluster was upper. Takes time.

I just keep getting back to neuro stimulators being effective for both then why not prescribe? No major surgery needed.

Try to be as specific as you can and learn about your pain. Where is it exactly on your face. Does your eye tear or water during attacks? Thats important. Thats indicitive of cluster. Exactly what type of pain is it? Burning, stabbing, or electric shock. All of those things are important. At least they were for me. Your neuro should help. Some primaries do not know much about clusters or TN.

I know exactly what your husband is feeling. I empathize. He can help you by trying to settle down from the pain shock. Breathe through the belly. Unclench his fists......try to breathe through it. The pain ends. I hope your church comes through for you financially because this pain is beyond words.

Hopefully they will find something on the mri that show a vascular compression or something that is treatable. I've done the MVD. It ain't easy but it's worth it. At this point, I'd look into neuro stimulators. Much less invasive.
I feel for you. I've only recently realized how much this has affected her (my wife)

Our church family was invaluable. We could not have made it without them.

God bless

HI i saw your fighting for husband on a email which caught my eye I don't come on much anymore because its very hard. I always end up crying. i try to not think about the TN as much as possible and just live my life. I have TN2 also known as ATN I have constant pain in my head. In my eye felt like someone was stabbing me in my eye in my temple I felt pressure bridge of my nose I had crushing pain, burning in my face, Constant pain I didn't want to be alive anymore..I learned from coming here what med I needed to take to help me. Nortriptyline 75 mg a day keeps my pain away enough to live my life as normal as I can. Im grateful for every pain free day I have. The anti sez med is more for Type 1 patients which I also tried and had a very odd reaction to it made my pain worse actually. There is no real guaranteed test for this disease. I strongly suggest trying this pill against the anti sez med. Hope this helps

I was having terrible problems with the anti-seizure meds, and my neurologist was a joke. I am 25, I have type 2/ATN and I am getting close to two years of fighting with this monster. I also recommend getting on Nortriptyline or amtriptyline (my spelling may be very wrong.) I got my GP to give it to me on the double diagnosis of ATN and Severe Depression, she literally looked it up on an internet search of "tn treatments" I found it ridiculous that my Family doctor was more able to help me with google than all the specialists I had seen, but it worked, for the most part, so I am grateful that she did. It has been a life saver. Nortrirpyline at 100mg a day leaves me with pain, but brings it to a level where I want to live again. I wish you all the luck in the world, hugs a prayers to you.

I went to a neurologist and he told me I had high anxiety and TMJ. Except I took all the test to show it wasnā€™t TMJ. My family doc was the one who took all the required steps to show what I had. She also was the one to give meds that helps with TN. I have TN1 and TN2 on both sides of my face. Left side is worse. I had to do X-rays, MRI, ENT specialist, then she tried gabenpentin and that was my first real relief. So that was her first major clue what it could be. Family docs can treat TN as well as a neurologist. If you arenā€™t ready for surgeries then try a family doc. I am so sorry you have to go through this. I know at times you feel so helpless and that no one will help. Just keep pushing. Sometimes if you go to the ER enough they might diagnose you then other Docs will got on board. Good luck!