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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> blood vessel encircling trigeminal nerve
        
(Message started by: firebrix on Nov 9^th, 2002, 1:00pm)

Title: blood vessel encircling trigeminal nerve
Post by firebrix on Nov 9^th, 2002, 1:00pm

Greetings all.
Mopar was referred to a pain clinic last week. He went along well armed with info for the unenlightened, but was pleasantly surprised that the doc there was well aware of CH and was informed.

He told Mopar that in some cases a blood vessel wraps itself around the trigeminal nerve compressing it and causing the pain. He also said that an operation could be done to remove the offending blood vessel.

My questions are:
Has anyone else heard of this?
Has anyone else had experience of this?
Would this blood vessel show up on a MRI or cat scan? Like, how would one find out if this were the case?
Prognosis?

Before I get flamed for not using the search I did, but didn't really know how to phrase my search. ??? If there's anyone out there who can enlighten us on this please let us know. Please. Pretty please. :-* with sugar on top!!

Wishing you all PFDAN and ever seeking enlightenment

firebrixcolor=Purple][/color]

Title: Re: blood vessel encircling trigeminal nerve
Post by Jarvis on Nov 9^th, 2002, 1:10pm

Hi I dont know much about this idea, but I would think if the nerve were wrapped the pain would be rather constant. No letup. much like a pinched nerve. of course I dont know his situation either.

Title: Re: blood vessel encircling trigeminal nerve
Post by firebrix on Nov 9^th, 2002, 1:29pm

Mopar has been chronic for three years - episodic before that, but not for long.
He has tried all conventional meds and a few less conventional.
I too thought that the pain would be more constant if this were the case, but his pain occurs just like many other chronics - every two hours at varying intensities. Mostly extremely intense.
He has been diagnosed chronic CH by three neuros.
Thanx for your reply
firebrix

Title: Re: blood vessel encircling trigeminal nerve
Post by rick on Nov 9^th, 2002, 2:06pm

Firebrix,

I'd be very cautious in considering surgery, based on previous statements made by other members of this board who have taken that route. I've heard some unpleasant stories, and have yet to hear of anyone who has been truly and permanently "cured" as the result of an operation.

I have heard a number of stories regarding some rather nasty side effects related to surgical procedures used to "treat" CH. Hopefully, others here can provide you with more details.

Peace,

-R

Title: Re: blood vessel encircling trigeminal nerve
Post by Mark C on Nov 9^th, 2002, 9:38pm

I agree with caution..............but I would piss on a spark plug if I thought it would help my head. :o

Title: Re: blood vessel encircling trigeminal nerve
Post by Marc on Nov 9^th, 2002, 10:42pm

An MRA is often used to determine if there is any interference between the two. When they are pushing against each other, a form of Trigeminal Neuralgia can result. This is a very different condition than CH's.

If so, a small plastic wafer or shunt can be surgically inserted between them in order to eliminate (or at least reduce) the irritation to the nerve bundle.

From what I've read, this type of surgery is often very effective to relieve that particular condition.

Good luck,

Marc

Title: Re: blood vessel encircling trigeminal nerve
Post by pjbgravely on Nov 10^th, 2002, 7:13pm

I have heard of this but can't remember the name of the illness. Victims get horrible constant pain in their face and elsewhere and surgery can be done. They put shredded teflon between the nerve and blood vessel. If the same happens in CH it is probably in the brain and is not easy to get to. PJB

Title: Re: blood vessel encircling trigeminal nerve
Post by goldenpuppylady on Nov 10^th, 2002, 8:03pm

I know of a man in Iowa who had that nerve cut at Mayo's clinic, and was told he would be no more pain, and he suffered some mini strokes, and the headaches have returned. Don't know if this is typical, but just what happened to him . He did suffer paralysis on that side of his face, which they told him he would.

Title: Re: blood vessel encircling trigeminal nerve
Post by Ueli on Nov 10^th, 2002, 9:07pm

Hi Firebrix and Mopar,

The interaction between the trigeminal nerve and a blood vessel is with the main artery, as you can see on this Picture of the trigeminal nerve (http://www.clusterheadaches.org/library/general/trigeminal_pic.htm). I have never heard of a minor blood vessel (one that could be cut) wrapped around the trigeminus.

Some charlatans, like Dannyboy and Ali, recommend some surgery to decompress a minor branch of the trigeminal in the temple area. Maybe that helps some selected cases of meegraines, but certainly not for CH, despite the fact that these quacks try to mix up CH and M., in an attempt to find more suckers.

For any surgical procedure you should

insit that this procedure is recommended by experts independent from the performing surgeon,
ask for reviews that clearly give the success rate and the rate of adverse side effects.

Using these criteria it is a fact: Surgical procedures can help for refractory cases of Trigeminal Neuralgia. Independent experts do not recommend it for CH (or meegraines).

I would say: Don't go for that!

PFNADs
Ueli

Title: Re: blood vessel encircling trigeminal nerve
Post by Marc on Nov 10^th, 2002, 10:29pm

Thanks Ueli,

I guess I didn't say it clearly enough.

Marc

Title: Re: blood vessel encircling trigeminal nerve
Post by firebrix on Nov 11^th, 2002, 4:06pm

Thanx for all your replies. We certainly won't rush in to this procedure. Really appreciate your help guys!
PFDAN to you all
firebrix and Mopar

Title: Re: blood vessel encircling trigeminal nerve
Post by Tom on Nov 11^th, 2002, 6:01pm

Too often it's not easy to stand the hybris of laymen/women giving «advices» on this board, without knowing a n y t h i n g about the subject they are speaking about.

1st)
There is not only o n e kind of trigeminal nerve surgery, meanwhile there are different very advanced surgical methods of this surgery that (not always, but in most cases) preserve the full sensibility of the a.m. nerve. Antiquated methods are debilitating, invalidizing and usually irreversible in their numbness producing effect, i.e. methods that involve the dissection of branches of the nerve. BUT the "TRIGEMINAL NEURALGIA MICROVASCULAR DECOMPRESSION" IS NOT A DISSECTION OF THE NERVE !!!

2nd)
Trigeminal nerve surgery is usually useless in CH, but there is also the so called " Cluster Tic Syndrome", a mixed «something» between CH and Trigeminal Neuralgia. In these cases the (central) Microvascular Decompression of the Trigeminal Nerve can be of a great benefit for the sufferer, without the well known disadvantages of the conventional dissective trigeminal surgery.
-----------------------
http://imigraine.net/other/clustertic.html

Cluster-tic headache

There is now recognized an overlap between trigeminal neuralgia-type headache and cluster headaches. The diagnostic characteristics of the cluster-tic syndrome are analyzed by Alberca and Ochoa (1994). The headaches are characterized by short attacks of pain localized in the facial territory with autonomic signs during attacks which come in clusters. Still another overlap syndrome such as chronic paroxysmal hemicrania and tic has been reported (Mulleners and Verhagen, 1996).
---------------
www.mhni.com/faqs_cluster.html#tic

What is cluster tic syndrome?

The cluster tic syndrome features the primary symptoms of cluster headache but with the added component of stabbing, ice-pick neuralgic-like components involving the eye, face, and jaw. The syndrome is found in 10-20% of patients but is often undiagnosed. True trigeminal neuralgia may coexist with cluster headache.

Alberca and Ochoa (1994) reviewed 37 reported cases of cluster tic syndrome. They noted equal gender representation and found that trigeminal neuralgia usually appeared first. Some attacks appeared to blend both neuralgia and cluster headache symptomatology and could be triggered by touching of the upper lip on the involved side. Medical treatment was often not effective, although a combination of cluster headache therapy with that for trigeminal neuralgia was sometimes useful.

Several antineuralgic agents are available. These include carbamazepine, phenytoin, baclofen valproate, and clonazepam. Most recently, gabapentin has shown promising results in neuropathic pain disorders. As for surgical interventions, suboccipital surgery (Solomon, 1985) revealed compression of the trigeminal nerve by aberrant vasculature, and following treatment, the neuralgic component resolved.
---------------------
http://neurosurgery.mgh.harvard.edu/mvd.htm

Trigeminal neuralgia or tic doloureux...This irritation is occassionally due to benign tumors or to multiple sclerosis either of which can usually be detected by a high quality MRI of the brain. In the majority of cases, however, imaging of the brain does not reveal a cause of the nerve irritation. In such cases a small vessel (usually an artery but occassionally a vein) is often found to be compressing the root entry zone of the trigeminal nerve at the brainstem.
----------------------------------

For more information about the mentioned surgery put into the Google: "trigeminal neuralgia microvascular decompression" and read ! - following some examples:

---------------
www.neurosurgery.ufl.edu/ClinSpec/trigeminal.html
www.neurosurgery.ufl.edu/FacultyPage/TicBrochure.html

Microvascular decompression (the Janetta procedure) does not result in the numbness associated with a radiofrequency procedure. The vascular decompression operation is a major surgical procedure, which commonly requires 2 to 3 days in the hospital after surgery. After the induction of general anesthesia, the patient is positioned, prepped, and draped for a retromastoid craniotomy. A small (half dollar sized) opening in the skull, allows the superior lateral corner of the cerebellum to be retracted. The trigeminal nerve is easily visualized with the operating microscope. During the operation, a vessel (often the superior cerebellar artery) is usually found compressing the root entry zone of the trigeminal nerve. This vessel is dissected free and padded to prevent recurrent compression. This results in permanent relief of pain, without facial numbness, in the vast majority of cases.
--------------------
http://drjho.com/id68.htm

Endoscopic Microvascular Decompression
-------------
Thomas

Title: Re: blood vessel encircling trigeminal nerve
Post by pjbgravely on Nov 11^th, 2002, 6:25pm

Thanks Tom, I was waiting for someone who knew the facts and where to find them. PJB

Title: Re: blood vessel encircling trigeminal nerve
Post by meggregg on Nov 11^th, 2002, 9:19pm

I just posted something about surgery to alleviate the pain of cluster headaches. You may want to take a quick peek at it. I am checking it out in depth... I am being scheduled for additional specific emg testing on the facial nerves (mine also involves facial paralysis w/ch). As I know more, I can update. But to me, if surgery is what it takes to have a life again, as long as there is hope, I'll try about anything to relieve the pain.

Title: Re: blood vessel encircling trigeminal nerve
Post by dmaislin on Nov 17^th, 2002, 8:08am

The headaches are more closely related to a epilectic seizure of the brain. There are some bad cells, an overactive hypothalamus (your body clock) with a minute difference in the size in the grey matter from the left and right side. Over time, something (yet to be discovered) finally triggers the hypothalamus to send a signal which starts the headache cycle. Headaches put you in a cycle until your body clock can be reset to not trigger the headaches any longer. Preventative medicine is key so that you can mess with the clock to stop the clusters. The latest cluster headache study is being conducted with civamide:

http://archneur.ama-assn.org/issues/v59n6/abs/noc10084.html

The thing is, solve the issue at the source, not at the vessel. Something is instructing the blood vessels to misbehave and that is what must be fixed.

Title: Re: blood vessel encircling trigeminal nerve
Post by ScorpionHand on Nov 17^th, 2002, 12:59pm

dmaislin

Quote:

solve the issue at the source, not at the vessel

I'm with you there. Your body does not send blood to a specific area for no reason.

Title: Re: blood vessel encircling trigeminal nerve
Post by Tom on Nov 17^th, 2002, 5:31pm

Refering to the "Trigeminal Decompression Surgery" I explicitly emphasized :

2nd)
Trigeminal nerve surgery is usually useless in CH...

Thomas

Title: Re: blood vessel encircling trigeminal nerve
Post by Charlie on Nov 18^th, 2002, 5:06am

All I know is that there are very few, if any, who have posted here that say what a wonderful thing their surgery was. Find out everything and more. So far, it seems iffy at best. I wish it weren't the case, but sadly, it is.

Charlie

Title: Re: blood vessel encircling trigeminal nerve
Post by firebrix on Nov 18^th, 2002, 5:21pm

You guys are too much! ;D
Thank you for all your well researched and deeply thought-about replies.
Having read all the info, we too realise that there is little chance of this working, but when ideas are presented by professionals with such confidence, one is tempted to think they might just be on to it, this time. ::)
I am now reminded that the best info is from those who contribute to this site and the Ouch site!
Thank you all very much and hoping you are all having happy days and no pain.
Always ready to help if I can be helpful
firebrix

Title: Re: blood vessel encircling trigeminal nerve
Post by dannyboy on Nov 19^th, 2002, 7:08pm

Hello Ueli,

Missing me were you?

Hey has anyone seen sweet_landings? And what a sweet_landing it was. She got asked to "move on' because she didn't have clusters. OUCH!

She hated me more than Ted though which takes some doing. Although I have to admit to taking the 'prick trophy' two years running now. Heavily contested award that it is in this room, I plan to hold on to it.

Tom, you're the Bomb. Rock on!

But I don't think it's fair to call Ueli a woman. Woman have done nothing to deserve it.

Stay away from the Lions kids.

Danny

Title: Re: blood vessel encircling trigeminal nerve
Post by Ueli on Nov 19^th, 2002, 7:34pm

It seems he swallowed the elephant feet. ::)

And I had hoped DJ banned him for good. http://www.headachesupportgroups.com/echat43/sadsmiley.gif

(And why, dickhead, don't you ask sweet_landings directly for her opinion about me?)

Title: Re: blood vessel encircling trigeminal nerve
Post by dannyboy on Nov 19^th, 2002, 10:08pm

You ban me in a Dream you better wake up and apologise

Title: Re: blood vessel encircling trigeminal nerve
Post by David G on Nov 20^th, 2002, 9:20pm

I have been CH free for over one year after surgery.

Title: Re: blood vessel encircling trigeminal nerve
Post by Riccardo on Nov 21^st, 2002, 2:16am

David, I'm happy for you. But...... isn't surgery a bit ...generic?!?

The ONLY surgery with good (and tested.... also by Doc Goadsby) results is the deep electrical stimulation of the hypothalamus, did at Besta in Milan (Italy).

But.... there is always a but... Is a risky surgery (you run the same risks of a brain aneurysm removed). So it can be done ONLY in chronics that have no success with meds.

Another risk you could run (2 patients on 8) is that the CH ....swap side!! (and this means another surgery.... etc etc)

Title: Re: blood vessel encircling trigeminal nerve
Post by hdbngr on Nov 27^th, 2002, 9:58am

Yes, have heard of it. I have also been diagnosed with clusters and went to U of M in 1999 to have this surgery. They call it a micirovascular decompression or a plain old craneotomy (which means they open your skull).

Why did they do it? I'm chronic. What did they find? Two nerves, number five and seven, were wrapped around each other and engoged withother blood vessels. One of these nerves is the trigeminal nerve. They use microscopes to see the nerves, and said there was a severe indentation of the trigeminal nerve, which they attempt to move apart and keep apart by inserting small, teflon pledgets.

None of this ever showed up on an MRI or CAT scan. They sort of guess that the problem is there and if they find what they expect, they try to fix it.

Did it help? Yes, for awhile. I had significantly reduced attacks and pain for almost a year. However, the recovery time is long, about three months. The patient needs to stay on steroids (decadron) to control brain swelling, which is painful. They genally drill a hole behind the ear and then either fill in the skull with a mixture of your own ground bone and blood or a teflon plate.

They offered no guarantees, so no one was disappointed, except me. They said they were sure it would help for awhile, but might not be permanent. There is a risk of surgical meningitis and latex allergies developing. The surgery itself took about 4-5 hours.

Would I do it again? No. But it had cured the pain permanantly, I would be singing a different song of course. Weighing recovery time, it wouldn't be worth it for me to do it again unless I had a guarantee, and they don't offer those. There are other treatments out there that are a lot less invasive. If they say this is what they want to do, I would ask some MAJOR ??? ??? questions first.

Title: Re: blood vessel encircling trigeminal nerve
Post by Tom on Nov 27^th, 2002, 4:13pm

I dare to say that even after the PET findings of Prof. Goadsby (i.e. the abnormal hypothalamus we all have, as said...) the CH still remain a riddle:

- how was it possible that hdbngr got relief from CH for ±one year due to trigeminal decompression only, as the hypothalamus wasn't touched ? - I wouldn't have expected that possibility...

- the PET results, the success of shrooms/triptans/lithium, the Italian electrostimulation of the hypothalamus, the sometimes described success of melatonin, and even the success with sex and/or other physical exercises (Charlie's Method included !) give evidence for a central (hypothalamus and serotonin borne) cause of CH.

- but tooth treatment, anesthesia or electrostimulation of peripheric nerves, peripheric botox injections, and the trigeminal surgery seem to be successful too (sometimes...).

- and the not appreciated opiates seem to work sometimes, too.

- Furthermore: CHeads report first manifestations of CH after head injuries, tooth extractions, different operations etcetc

Thus, the more informations I get about successful CH treatments and about their possible causes the more I doubt that CH are a homogeneous desease and the more I beleave that they are a "syndrome", i.e. "only" symptomes of possibly very different pathological agents.

Well, it's not even my opinion, it's only my impression so far.

Thomas

P.S. Please don't misunderstand this post as a lobby for Ali's surgery !

Title: Re: blood vessel encircling trigeminal nerve
Post by dannyboy on Nov 29^th, 2002, 9:04am

Would a headache that came in exactly the same cycles as a CH but only ever reached a kip 3, still be a CH?

Title: Re: blood vessel encircling trigeminal nerve
Post by hdbngr on Dec 2^nd, 2002, 10:50am

Tom -to answer your question:

Me either, except what was done wasn't only a microvascular decompression. From what was explained to me, my procedure was experimental, and I was the ninth person in the U.S. to have it done, ever, and the first in my state. The Doc consulted with two others physicians, one at Yale, and one in Oregon, on how to do the procedure. This was some sort of variant procedure.

They mucked around in there quite a bit, hence the long recovery time. I have the notes from the procedure, which I don't claim to understand half of, but I know the nerves were separated along the entire brain stem, down into the neck. But when a Doc said he thought he could help, I had to try it. The Doc was horrified that physicians were cutting the nerves on other patients, he already knew that procedure didn't work.

When I said relief, I didn't mean to imply"cure". I was not pain free, and still had flare-ups, but they WERE reduced. Why? If I could explain that, there would be a cure availalble.

What is interesting is they did find something wrong with the nerves, stuff that did not show up on any of the tests I have had in the last six years.

The hard part is wondering if my body would have taken that "break" anyway, had I not had the procedure? I will always have to wonder about that, but at the time, I had no alternatives at all. I was miserable, and when brain surgery starts to sound like a good idea, you know you have hit the bottom. I was pregnant at the time, and was not allowed any meds. They had abrubtly discontinued my Sansert/Lithium combo which had been helping because of the side effects associated with pregnancy.

All of you know the intense pain and stress of cluster headaches, and with no meds at all, preventative, abortive or pain (beyond Tylenol) the body can't handle it. The headaches were inducing labor at a very early stage, and the OB and neurologist felt surgery was a viable alternative to the constant pain. Any of you who want to know, brain surgery is less painful than a cluster headache cycle, so is childbirth. Cluster head pain is much, much worse.

Again, I wouldn't do it in the face of alternatives, but wanted to offer information to those who were thinking of trying such a procedure at their Doc's urging. Mine was very honest with me, and said he could offer no guarantees of long-term relief. If a Doc does guarantee results, run screaming, he's a quack.

It's still me and my pain, and I don't know why I hurt or where it originates. The latest theory from a new neurologist is they didn't go far enough down???, and I am looking into the hypothalmus research closely, which I don't believe was available in 1999 when I had this done. As I mentioned before, proceed with caution. One important note: I have a healthy three year old little boy now, that I don't think I would have carried to term otherwise.