Just joined this forum and am wondering if anyone has had a successful surgery MVD for ATN. I have occipital neuralgia, cervicogenic headache and ATN. This all started with wicked neck pain 10 months ago. I am only 42 and will not live out my life like this…I would rather try surgery than suffer with less than a great quality of life. Anyone with a successful or unsuccessful story please let me know! thanks
i really would like to know the answer as well. I am looking for a method to reduce this pain which is totally debilitating. Another option may be a pump. That is my number one prioity and then release the compression. This is certainly not quality of life. My husband misses his spouse and I miss him as well as all the people I love. I am looking into this. Try Red.He seems to know everything.
Not everything, Elaine, as we both know too well... But I share what I've learned and I try to be constructive.
Regards and best,
Red
you are constructive and you do care. i am really sorry about yesterdays event. oviously I am here as the rest os, coping and trying.
sometimes it is overwhelming. you have helped me with guidance. I really must get this in order, so my surgeon understands.
I am contemplating surgery as well. Dr. Babu at NYU and Dr. Casey in Detroit seem to be the guys doing the most with ATN and MVD these days in my research. Hope we can both find some relief!
Hi Aliscott, can you let me know where your neck pain is? Do you have any shoulder pain leading into your arm? What does occipita neuralgia feel like; sharp pains in the eyeball etc...? Thank you
i did MVD for ATN , didn't help me but i am one case
MVD for ATN are less Potential , about 60%
i did it because i have compression on MRI
the more the pain is more like TN type 1 the MVD more Potential
the more the pain is more like TN type 2 the MVD is less Potential
if the pain start like type 1 and develop to type 2 its better for the MVD Success rate
if the pain was start and been always been like type 2 and you never have electric shock so the Success rate is low.
Thanks Tomey,
You said that very well. All I have heard here is that MVD works only for TN, not ATN. On California there is a Dr doing a new procedure. The hole is as small as your thumb nail, and he uses a scope to do everything, so not as much damage is caused, and almost no after effects. I wish the world would make surgeons use the newer, safer method become the new required way to do it.
Sheila
i didn’t want to say it but i think also that mvd work for TN and not ATN
when they say there is 60% the doctors rely on study that categorize ATN Different from us
they categorize it that if you have more then 50% pain that like ATN so its ATN but always or most of the time there is some regular TN pain or start with TN .
what with the people that have only ATN like most of us here … ??
the big problem like stef and red talked about a lot is that Different doctors categorize ATN Different !
so its very important to Read a study Thoroughly !
i am not a doctor but from what i know i won’t recommend to do MVD for 100% ATN Especially if there is no compression on MRI with 1mm slice
hen.
I have occipital neuralgia and cervicogenic headache that have responded well to facet blocks. I had an upper cervical sprain strain at c23 on the right that started all this back in november. Pain was 10/10 with radiation up the back of my ear and a numb cheek. I also have djd/ddd at c456 but really no arm pain any more. I had a sinus infection for 2 months (jan/feb). My major symptoms are midline sharp pain/constant pain/ that starts at the bridge of my nose goes inferior into the nose and lateral across the forehead. Both eyes always hurt, but the hey hurt differently since I received an occipital nerve block. I do NOT have sensitivity to wind etc… It is there 24 hours a day. Basically that is it… hell would be a vacation compared to this.
waigmacker said:
Hi Aliscott, can you let me know where your neck pain is? Do you have any shoulder pain leading into your arm? What does occipita neuralgia feel like; sharp pains in the eyeball etc...? Thank you
I read about that endoscopic procedure as well and the opening is only dime sized as compared to a quarter sized opening and the healing time is significantly less. I am not sure tho if this can be used for ATN sufferers, but if mine does not continue to be managed thru the Tegretol, I am deifinitely asking my Neurosurgeon about it. For now, he has recommended the meds. M
I have had Gamma knife radiological Surgery on 2-29-08. I was free from drugs and the INTENSE searing pain for three years. Quality of life significantly inproved. I’d do it again, in a heartbeat. Currently I am on eight hundred milligrams of Tegretol as the intense pain started up again in May of this year. This is my first time taking this drug, as I was reluctant to take it before, hence the GKRS procedure. I can have this procedure done again, I think its either a one to two year wait in between. When I was there, having it done, I remember a man telling me it’s gonna be ok. this is the third time I’ve had it done, piece o’ cake. For now, the Tegretol is working at 75% level. Hope my story helps. Peace M
i think its great that you have significant pain relief. i thought gamma knife lasted longer. everything helps. hope you have continued improvement. i will go to a university center in ny and fla. i am trying to achieve some pain contol. I do have 1-2 days a week without pain. So we know if i avoid too much heat or cold it helps. thats not so easy. hope you achieve more success.
you have been through so much. i am so sorry, but you are a troupper. i had too many cosmetic surgeries which caused compression andglosso-pharyngeal, vagus, and supra-orbital nerve pain. I did not show TN on a test, but I still wonder if i should retake it. It would seem the more tests, the clearer the diagnosis, if possible. I dont know what comes first, the reconstructive surgery or a pain procedure. So my case is a bit atypical.
I need top teeth pulled for implants and I am petrified without achieving pain contol. i am not anMVD candidate but perhaps there is another procedure.
you mean striking back. is that correct. wishing you well.
There is a degree of controversy surrounding the use of all surgical procedures in Atypical TN patients.
Doctors come down on both sides of the "to do or not to do" question. However a recent article in the knowledge base at the Facial Pain Association, may offer something for discussion with your doctor, for anyone who has ATN . You will need to register with the Association to obtain a login, but it's free and you won't be solicited (that I know of).
The top level abstract for the article is as follows:
OBJECTIVE: To study the effect of microvascular decompression (MVD) in trigeminal
neuralgia (TN) patients with or without constant pain.
METHODS: The study includes all first-time MVDs for facial pain performed by the
senior author (PKE) during the 6-year period from 1999 to 2005 in the Department of
Neurosurgery at the National Hospital. At the time of follow-up, pain relief was assessed
using a standard mail questionnaire; those patients still having residual pain were further
examined in the outpatient clinic or interviewed by phone.
RESULTS: The total study population includes 135 patients who underwent initial MVDs
(67% of MVDs for TN without constant pain and 33% of MVDs for TN with constant
pain). At the time of follow-up, the response rate was 95%, which provided us with
128 patients. The median observation period was 38 months (range, 12-87 mo). For
episodic pain, MVD caused complete (i.e., 100%) pain relief in 78% of TN patients
without constant pain and in 77% of TN patients with constant pain before MVD, and
a significant pain relief (i.e., worst pain marked as 0-3 cm on a 10-cm visual analog scale)
in 85 and 81%, respectively. For constant pain, MVD caused complete pain relief in
70% of the TN patients with constant pain before MVD, and significant pain relief in 77%.
CONCLUSION: In TN patients with constant pain before MVD, significant relief of
episodic and constant pain was observed in 81 and 77%, respectively. Hence, the presence
of constant pain should not prevent TN patients from being offered MVD.
Jean, were you ever able to directly trace your blindness to a surgery? And if so, which?
Regards, Red
A couple of things occur to me in your reply, Jean. Not to pick at nits, but I'm puzzled as to how you could get a corneal scratch from a procedure that was done inside your skull. Did you intend to say that the cornea was scratched when the tearing reflex was interrupted by the MVD surgery? Likewise, what in the world was a PA doing as an active member of s surgical team? I can believe such a professional may have assisted in the operating room in some way. But not inside your head.
Likewise -- and in no way to minimize or disregard your individual outcomes of surgery, Jean -- I think it should also be said that loss of the tear reflex and subsequent damage to the cornea is a (thankfully) relatively rare side effect in procedures for MVD or partial section. If I'm recalling correctly, the incidence of such horrid outcome was something like five or so cases out of the 1200+ reported by Peter Janetta's surgical team in articles published by the New England Journal of Medicine. I will check that when I can.
When you are one of those "rare" cases, none of this is much comfort, of course. But for all of the real risks, MVD still seems to be about the best medicine has to offer. About 15% of all MVD patients have lasting negative side effects of surgery, whether or not it is successful in reducing or eliminating TN pain. And more experienced surgeons who specialize in the procedure seem to do better.
Regards and best,
Red
Hi Jean and Red,
I was just informed last week that I have damage to my cornea and need to use my eye drops more, my eye no longer tears since I had skullbase surgery almost two years ago. I have never tried the gel, do you have a suggestion what would work good for daytime and night time? My surgeon just appologized and said there was nothing he could do about it and it was a risk of the procedure. Since he had just saved my life and removed a very large chondrosarcoma and I was still alive I didn't care about my eye. This was so rare, I couldn't even receive follow treatment in Canada and the provincial goverment pain for my treatment in the USA. My surgeon was in BC, Canada, the best surgeon ever and helped when nobody else could. I still wouldn't change a thing because in my case each day is an extra one I almost didn't have. I have also been told I am not a candidate for MVD but some days I wonder . . . I had the TN and constant burning pain before the tumor was found, its the reason they found the tumor, could it be a coincidence? I have a few side effects and over twenty titanium plates but am exhasted most days and never pain free but well managed. A fair trade :)
Tracy
Jean said:
Hi Red,
Yes, this blindness is directly correlated to the surgery. According to every doc I have seen, including the neurosurgeon and his PA who did it, no question at all.
When I woke from the 3rd, the partial section of the nerve, I had such blurry vision in my right eye (the side of my ATN) that the surgeon's initial suggestion was that there was a corneal scratch that occurred during the operation. Fortunately and unfortunately, since something had gone horribly wrong in that surgery, I had profound numbness all the way from chin to crown, so I couldn't feel my eye to tell them if my eye even hurt! They treated for the scratch, but there it actually got worse very quickly. Upon discharge, which was on a Saturday (3rd day post-op) I couldn't call my eye doc, so I got in to see him Monday on emergency basis. He was so upset when he saw what was up and very glad I'd come in so quickly. He started me on steroid drops 4x daily and antibiotic ointment morning and night.
He described my condition as an ulcerated cornea, which happens in rare cases (which is my thing, if there is a slight chance of something going wrong, it will happen to me!). Once that nerve is cut, the cornea basically thinks the body is dead, so it quits working and begins ulcerating. You could actually see the bubbles on the surface with the naked eye! I got into the corneal surgeon within a couple of days. My vision in that eye was 20/400. She put in a contact lens bandage, which is basically one of those lenses that stays in for 6 months, and pretty much the same eye drop regimen my 1st doc had me on, plus ointment at night to keep it moist. So part of the problem is that I couldn't feel the lens on my eye or if/when it fell out, and since I couldn't see out of it I couldn't tell that way either. And as soon as the lens would fall out, the ulcerating would start up immediately. The good thing was that I was becoming so fanatical about putting in artificial tears every 15-30 mins that I became good at being able to SEE if the lens was still in my eye (it sounds obvious, but it was hard to tell with all of the ulcers). I was no longer producing tears, so she put a plug in a few weeks in to this process which did help keep the lens from falling out after awhile. It doesn't fall out nearly as much anymore, but I don't go anywhere without a spare, let's put it that way.
Red, this ordeal began January 5 and is STILL going on. My surgeon confirmed that this was "a rare side effect of the partial section" during my post-op follow up on 1/20/11. The scarring from the ulcers is, unfortunately, right on the iris and pupil, through which I obviously see, so my vision has only improved to 20/60 (I have had a few days at 20/40, but they don't last) in that eye, and NOTHING corrects it (the lens in the eye is my regular prescription, but it makes no difference). It is always like looking through Vaseline. The prognosis is poor, but the doc still says that I get 18 mos for cornea to completely heal. Problem is, we haven't "tested" the theory that if the lens comes out, will I just ulcerate and here we go again?
I still put drops in several times daily, but we've got the treatment down to lower dose steroid drops every other morning (my IOP was 35, when it should be 10-20, last visit it was 21), antibiotics twice daily, antibiotic every night for sleep. I only see her for monthly visits as opposed to weekly (that saves a lot of driving, which helps everyone, since someone had to drive me the 70 mile round trip every time!).
Again, had I known that this was a potential outcome of this surgery, I never would have done it.
the aim of this surgery was to stop sensation in the lower quadrant of my cheek, NOT the entire hemisphere of my head!!
Jean
Richard A. "Red" Lawhern said:
Jean, were you ever able to directly trace your blindness to a surgery? And if so, which?
Regards, Red
If you have badly infected teeth, is there a choice? I know there are certain safeguards to take. I have research to do. There are risks to the surgeries as well. There is also a procedure called rizotomy. I have homewoek. I wish you the best. I hope everything improves. You have been through a lot. Does this make you homebound?
I sleep with a soft eye mask and it covers the cheeks. it may help. Theres also a dry eye website which is excellent.
Jean said:
Hi Elaine,
Just an FYI, my pain mgmt doc strenuously recommended I NOT have ANYTHING done to my mouth to replace to two teeth I lost to ATN, as he, too, is afraid of the pain consequences. My 2 back upper molars are missing, the 2nd to last from 2001 and the furthest back from last July. And boy oh boy, even though I supposedly don't have any nerve left in that part of my face, there is no way on this earth that I will let ANYONE go near that area ever again!
Just my 2 Cents on having anything done for cosmetic purposes...be so very careful!
And yes, I mean Striking Back, the book. It blew my mind! And saved my life. But as I said, my surgeon neglected to tell me about it until AFTER I'd already had all of my surgeries done and was blind in one eye and lost all feeling on the right side of my head...oooooooops. Obviously, had I read that I NEVER would have done 2 of those surgeries (except for the MVD), and I would still be able to see out of my right eye and have feeling. I'd still be in pain, but I'm in pain anyways, and it's just as much pain as before, so really no difference other than it's worse! ARGH!
Jean
elaine48 said:you have been through so much. i am so sorry, but you are a troupper. i had too many cosmetic surgeries which caused compression andglosso-pharyngeal, vagus, and supra-orbital nerve pain. I did not show TN on a test, but I still wonder if i should retake it. It would seem the more tests, the clearer the diagnosis, if possible. I dont know what comes first, the reconstructive surgery or a pain procedure. So my case is a bit atypical.
I need top teeth pulled for implants and I am petrified without achieving pain contol. i am not anMVD candidate but perhaps there is another procedure.
you mean striking back. is that correct. wishing you well.
Tracy, I suspect (as a non-doctor who reads a lot of medical literature) that the reason your physician has said you are not a candidate for MVD may have something to do with the extent of surgery that he had to do for the tumor. If the nerve is already scarred by surgery, MVD will have nothing to "separate" or de-compress from the nerve. Of course, if you want final clarity, you should probably ask him about the rationale.
Your reference to "over twenty titanium plates" was a bit puzzling to me. Did the surgical team have to make that many incisions through your skull to remove the tumor in pieces? That's got to be the most complicated craniotomy I've ever heard reported.
Go in Peace and Power
Red