What do I do?

1

Hello fellow TN sufferers and supporters. I have had ATN for ten years and in the last two years it has become bilateral and almost impossibel to live as a husband and father. I have had three neurologists, three/four pain management docs and have been on 10 - 12 different types of meds as well as over a dozen MRI's/CT scans with the most recent being in April 2011. The doctors are stumped due to the fact that the MRI's and CT scans do not show the usual nerve/artery/vein problem that is common for TN. The meds provide no relief (I have been on anywhere from 50mg - 150mg daily of hydrocodone while taking the standard issue carbatrol, clonazapam and other meds) Nothing even fades the pain. The doctors are hesitant as to which surgery to perform because I clearly present as an ATN sufferer, however, the tests do not show a clear cause. I have been in and out of hospitals, ER's, doctors offices and cannot get the pain to stop.

Some of the doctors have suggested procedures which are considered experimental by insurance companies which means no coverage for the procedure.

I have had several appointments with the Cleveland Clinic but have had to cancel because I do not have the financial menas to get there for treatment.

Does anyone know of a doctor or facility that offers pro-bono work for cases of ATN that are unresponsive to any meds? Some of the meds actially make the pain worse which leads the pain management doctors to consider something called a "parabolic effect" certain pain meds can create in people.

I would love to put my face through a plate glass window or have a bat right to the face. The pain is unbearable and I need help/feedback/guidance.

Thanks,

-Chris

2

Hi Chris

very sorry you are suffering with this pain. Hope you find the information and support you need.

Best wishes

Maggie

3

Do you have the “shock” pain that happens with Classic TN, or do you have the 24/7 ache/burn type pain? Or both?

4

Chris,

You might want to go to www.lasermedcenter.com they're the leading center for treatment of TN located in SC...they offer a complimentary consultation over the phone...they have one available at 5 pm today if you call now...the number is 1-888-■■■■■■■■...they can give you better advice and contacts in CO and they might be able to work out financial costs if you go through them...get back at me and let me know what you think...

5

Chris, have you tried a high dose of amitriptyline, like 100mgs/day, and stuck with it long enough for it to work (like 3-4 weeks)? It's the thing that has helped me most. Still have pain, but helps.

6

Also, I'm in the process of getting a stent. It's a plastic appliance that is a mold of my teeth and gums on the pain side. My doctor will prescribe a compound of several different meds, some standards like neurontin, others like lidocaine, that will all be mixed into one gel. I will apply the gel to the stent and then wear it. Not only will it give me some instant pain relief, but it's possible that I'll get pain free DAYS.

A girl posted about it in FB, and she said she has pain free days and now she doesn't even have to wear the stent every day. (and she's legit, not a scammer) And she had pain in her face and teeth. When I asked my doctor about it, he confirmed that this is possible for me too.

He offered me the stent early in my treatment, but I thought it was just Lidocaine so I didn't pursue it. But now that I understand that it has many meds in the compound, I'm much more excited. I'll be sure to let you know if it helps. I'll probably start a thread about it eventually.

7

Hi Chris…
I’m sorry I do not know a lot about ATN. But I do know that my dad had 2 MRI’s to check for TN and they showed nothing! They went ahead and “guessed” that something was wrong so they did Gamma Knife. That really had no effect but to numb the side of his face, tongue and lip. He suffered another year or so until the pain broke through all sorts of medications that he was on. Finally, they decided on doing MVD surgery. Problem being that they didn’t see any reason for the pain on the MRI. No nerves, blood vessels or veins as you said…so they started thinking tumor. Last week he had his surgery and wa-la! They found a large blood vessel and 2 veins underneath the nerve that didn’t show on his very thorough MRI…and he is so far now pain free. So I hope that might give you some hope that the problems don’t always show up on MRI’s. Good luck to you …I wish you well and that you might find some answers on here for your ATN.

8

Chris,

I feel so bad for you. I have ATN and have been on all the meds, nerve blocks, radiofrequency ablasions, etc. I'll make you feel good that you couldn't get to the Cleveland Clinic. I did. I was referred to the Neurology Dept. I did not know specific neurologist to ask for so I ended up seeing a very kind doctor who was AT LEAST in his late 80s. Of course, he was from the generation that thinks ATN is a mental issue. He kept saying "and aren't you lucky to have a supportive husband" and "isn't it wonderful you are able to go to work" He said he could refer me to the neurosurgery dept. but he did not think there was anything there that could help me. So, I wasted a vacation day and a tank of gas when I could have stayed home and read Norman Vincent Peale's "The Power of Positive Thinking."

I just had a peripheral neurostimulator implanted - there are many people who have had great results. Unfortunately, I have not. I think it's because of my pain being under and behind my eye. I can't turn it up beyond the lowest setting because it affects my eye, but that doesn't mean it wouldn't work for you, it can be done bilaterally, and it's not permanent, and you can test it first (When I tested it, it didn't do anything but I was desperate enough to say that it did so I could have another weapon in the arsenal - very dumb move on my part) I'm very lucky because I have health insurance and it was covered. Do you have any health insurance?

Where are you located?

9

Chris,

A few weeks ago Red sent out this study that had been done on a variety of patients having MVD, or MicroVascular Decompression on both those with typical and atypical TN and it showed that those with atypical TN fared just as well as those with typical did, which I think is AWESOME news for those of us with atypical.

I am taking this study with me when I see a Neurosurgeon next week. Even if they say my chances are 50/50 I would still have the MVD done because it is the only surgery out there that is considered a permanent fix. I wish you all the best and will add you to my prayer list dear. Much love!!

10

Chris, I'll share what I know and believe, as it might apply to your situation.

(1) ATN is a more difficult beast to treat than Type I "typical" TN. This is true for both medications and surgery.

(2) The classes of drugs which seem to have the best chance of doing some good with ATN patients are tricyclic antidepressants like Amitriptyline and possibly opioids like Morphine Sulfate. Best practice appears to be to start the patient first on anti-convulsants and then add these other drugs "around the edges". If you are taking ALL of the drugs you have identified at the same time, then you probably need to be weaned off some of them because of unpredictable side effects and interactions. That's a job for your neurologist.

(3) If I was advising a close family member or friend concerning Gamma Knife, the advice would be not only no but HELL no. More than one neurosurgeon whom I consider ethically sound has told me that they consider the risks of collateral damage and adhesions following a GK procedure to be unacceptable. One went so far as to label the procedure "barbaric". When *any* surgery is effective for ATN patients, MVD has a better record of outcomes and persistence of effects. But as otherwise noted, you may be dealing with 50/50 odds or lower. If you've already had a destructive procedure, then the odds are worse -- maybe and imprecisely, one in three. Lots of surgeons won't touch cases like that.

(4) The article which Ali noted is one of the references in the Face Pain Info tab in the top menu of all pages here on the site. Look under Treatments - Surgery. To read the article, you'll need to have a login name at the TN Association, but that's a good idea anyway. Their Knowledge Base is very valuable. That being said, however, there is one qualification on the article that is important. I've recently been told that the authors may have selected cases from a larger cohort than they reported on, so it's possible that the article is slanted toward better outcomes. Even if it is, the article at least suggests that for some ATN patients, some of the time, MVD done with minimal physical manipulation of the trigeminal nerve can have positive outcomes. The statistics are still somewhat uncertain, but at least some indicators of usefulness are there, in my opinion.

(5) Although I haven't seen this number published, I have personally estimated from many patient reports that I've seen, and from fragmentary results in a few published papers, that for something on the order of 10-20% of all patients who receive an MVD, nerve compressions by blood vessels are not detected in MRI, but are found during the procedure. So an absence of these features in MRI images should NOT NOT NOT be used by a neurosurgeon as an excuse for excluding a higher risk patient (which you are) from access to MVD.

(6) I doubt you will find a surgeon who works pro bono. But you'll find many who negotiate lower fees, realizing that other family members may have to take a second mortgage on a house to pay them. Likewise, there is a section in the Face Pain Info tab which addresses free and low cost medical resources on the net, by referral to a large article on my personal website. I'd advise that you look up some phone numbers and websites in that large article, and do some calling to see what you can turn up.

Regards and well wishes

Red

11

Botox seems to have helped a few people, Chris. But not consistently or for periods in excess of days to a few weeks. I will take your comment about "all in your head" as ironic rather than substantive. It's neurology in your head, not OCD in your thoughts. And finally, the "let's try a drug and see what happens" approach is really not such a bad one, if the best drugs for ATN are tried first and your outcomes are monitored carefully during a planned ramp-up of dose. This is pretty much standard best practice because of the sharp variability in drug effects and side effects between patients.

Regards, Red

12

Hi Chris,

I am new to this website. I believe I have had ATN for about 20 years. I can sense the desperation in your post. I can relate. I went to several ENT doctors and some eye doctors at first because my symptoms were mainly in my nasal passage and eye. I had functions of the nose like mucous generation not functioning properly. I had an attached floater in my eye as well as dry eye. I also had teeth pain early on too. I even had a deviated septum operation because I had to do something about my condition. That operation made the symptoms worse (OMG!!!), and I lost hope in doctors. Over the years the symptoms have gotten progressively worse. Recently I have had bilateral pains, especially when the original side gets very painful. I also have stopped working because the pain interferes with my life too much. I can sense the desperation in your post. I can relate.

I too have tried several drugs. Sometimes the drug helps a little, but the side effects of hangover feeling and drowsiness are too much to take. Often the drugs effectiveness wanes quickly and flares ups increase.

I have been told by two doctors I respected that the pain was probably psychosymatic. This is even though I often go to sleep feeling fine but wake up a couple hours later from great pain. I did go the psychiatrist/psychologist route. That convinced me it was not psychosymatic, at all.

I am at a loss as to what to tell you about the financial aspects of this. The gamma knife and rhizotomy are outpatient and therefore much cheaper. But MVDs are more successful and less risky. My gut reaction is that if you have insurance, if they reject the procedure, you should file an appeal. I find that when I call my insurance company about the same matter, they give me a different answer each time. They have rejected claims and then approved them after I write them an explanation of what happened. Very frustrating. But I would think off hand that a rhizotomy, gamma knife, nerve block, stimulator or MVD would be covered. (Perhaps I’m wrong in assuming this.)

Recently I have come to some conclusion about doctors. There are some doctors that really like to recommend doing the surgery they specialize in on you… even though it is not best for you. I went to a pain specialist who recommended he do a rhizotomy (radio frequency ablation) even though he did not even look at my MRI or at the report. Surprise, surprise, he does not do gamma knife or MVDs. I then went to a gamma knife surgeon who looked at my MRI and saw no compression of the nerve and recommended gamma knife surgery (his only specialty.) Then I saw another surgeon who told me that I needed a stronger MRI and that, like Red says above, a gamma knife surgery was not appropriate (he also thought a rhizotomy was too risky.) I then saw another surgeon who looked at the new MRI (a T3 MRI using FIESTA technique) and said he did not see any compression and would not perform a rhizotomy or an MVD. I then went back to see the surgeon who had recommended the T3 MRI, he said he could see a vein touching the nerve and he wanted to do a MVD. He said this even though the report that came with the MRI said there I was normal. Next I had a neuroradiologist look at the T3 MRI and he said he could see the vein but that it was not touching the nerve. I brought these finding to my regular neurologist who only prescribes drugs and he said to trust the surgeon that wanted to do the MVD because that surgeon was a leader in the field.

Good luck! Let us know how it is going. If I see info on pro bono doctors, I’ll let you know.

Don

13

Hi Chris,

My heart hurts for you. My husband suffered from TN for 5 years during which time we had two beautiful daughters who couldn't go near him for fear of touching his face.

The pain was so insufferable that we decided to have MVD done. His Dr. was recommended by a cousin, Dr. Richard Byrne at Rush Presbyterian in Chicago. He was amazing. I would at least call his office (http://www.rush.edu/rumc/page-1144692714037.html)and talk with them. Tell them what's going on, where you're located and what they suggest. This was covered by our insurance. My greatest tip is you need to find a doctor who will be an advocate for you. One that can work with your insurance company to say that you can't live with this pain and need treatment for relief. It's not a cosmetic or experimental remedy you need but a life saving one.

At this point in your life I would make the MVD decision for yourself and your family. I know what it was like to live with someone who suffered deeply from that pain. He at one time was taking up to 19 pills a day to manage and one day it all stopped working.

The great news is that he is 98% pain free unless the barameter goes crazy and he gets a shock which thankfully is rare and we'll take that over what we had before.

Don't be afraid, there is help out there reach and grab it. When I went to look for support in 2004 there was nothing like there is today and I am so grateful.

I hope all goes well for you and your family.

Kind regards,

Teresa

14

Hi Chris,

Your condition sounds so familiar to me. I come from a family history of TN and ATN patients , which is very unusual but fact. I have a brother and sister with ATN and I have TN. I suffered with TN pain for almost 3 years trying to control it with carbamazepine-"the generic to tegretol", which, this is the best medication to control TN pain. Until the time came I had to keep increasing it until I reached 1200mg. My neurologist just kept giving me different pain meds and my brother and cousins kept telling me to get something done about it. My neurologist said that my MRI did not show anything at all. One day I dicided to find a neurosurgeon on-line in my area who specialized in treatments for trigeminal neuralgia. I took all my MRI film with me to the surgeon and in less than 30 minutes he came out an explained to me where the blood vessel was at touching the nerve. I told him that my neurologist said nothing was showing him that there was a problem and he just shook his head and said we can fix your problem in one of 3 ways but the best is through MVD surgery. He said I might have some numbenss as a side of affect but no pain. Two weeks later I had the surgery, which, for me was not bad at all and I have been pain free ever since. In fact it was the best decision I have ever made.

Find you a neurosurgeon and take your MRI film with you and do not continue to suffer with this pain. My brother had ATN and he had the rhyzotomy procedure where they burn the nerves and had it twice and he is pain free, he does take a small amount of carbamazepine to keep the twinges at bay. My Aunt and her son had this procedure and they are pain free and have been for years, yes, they have facial numbness but it is nothing compared to the pain and the fear of living with the pain. Hope this helps some and Good Luck to you,

Linda

15

Nothing to add just wanted to say good luck and hopefully you will find the answers that you need.

Nicky