TN has returned 10 yrs after decompression surgery

[Pennyann]

About 10 years ago I had microvascular decompression of the left trigeminal nerve. Had two blood vessels compressing the nerve. I had great results for a long time and I hoped for forever but about 2 years ago I started noticing little twinges at my temple or a little burning and I thought, 'Hmm, that kinda feels a little like that nerve pain I had.' It never stayed for long. I just hoped for the best and prayed it wouldn't get any worse, I could live with a little discomfort.

Well, I would say that from about the beginning of this year it has become very apparent that the pain has returned and it is getting worse. All the same sensations and triggers. I was just still in a little bit of denial but couple of weeks ago I had REALLY bad pain and I made an appointment with my primary physician. All I can think is 'Here we go again!'

I had a MISERABLE experience the first time around. I was only in my mid twenties and I was misdiagnosed, lied to by Humana doctors, and by the time I actually got to the neurosurgeon I wasn't talking, eating, cut my hair off. I couldn't even cry because moving my face or even a tear trickling down triggered pain. I am TERRIFIED of going through the same things. I am guessing that we'll go through the same trial of meds first even though it didn't help the first time. The side effects were terrible the first time. I was incapacitated with double vision and poor balance from meds.

Anyone had pain return after microvascular decompression? I'm wondering what to expect. I'm not in the mood for surgery, I'm not in the mood for a procedure that is going to leave half my face paralyzed but I am also NOT in the mood to be in excruciating pain everyday. I keep saying to myself 'Maybe it won't get worse.' and each time I say it it gets worse but I keep saying it. I am afraid they look at me like they did last time, like I just want attention, it's psychosomatic, or even that I am drug seeking even though I know narcotics won't help me. I think the way I was treated was almost worse than the pain itself. :(

[ToTs11]

Hi & Welcome,
Sorry to hear that you need to be here due to the return of your pain, that's sad news.
How unlucky for you to have pain again.
I would say that there are new meds available these days, I guess ten years back it would have been carbamazepine (Tegretol) or one of the other dated meds.
I use Trileptal (oxacarbazepine) this works well for me and others.
There are others too, such as Gabapentin (neurontin) and Lyrica (Pregablin)
I have been using meds for 6 years now and have good results with my current med, I have pain every day (bilateral Tn) but the meds do help keep it bareable mostly.

I think you would be best going to see your neuro and finding out what treatment would be best for you, he may suggest another MVD some sufferers do have repeated surgery, most hope the pain never returns.

I hope you do get some help and that your pain settles, I know how scary TN is, but stressing makes the pain worse as you know.
We cant win sometimes.
But there is hope.

Take Care & Keep us posted.

Tracy x

[baywatcher]

Sorry to hear that you have this hanging over your head again. In answer to your question about 2nd MVDs, yes, we have had at least one person here on the forum whose first operation lasted just about ten years - he went back and had a second surgery and last I heard it was completely successful (he doesn't post anymore). I'll see if I can dig out an email address for him, he and I used to swap recipes - if so, I'll ask him to check the forum in case he could answer any of your questions.

But as Tracy has mentioned, you might be able to handle this with some of the meds that are available. Tegretol worked for me for a long time and then went really bad and I had to be changed over to Trileptal. It is really very good at pain control without making life impossible due to side effects. You'll read that because these two drugs are related you can't take Trileptal if you've had trouble with tegretol. Don't believe that until you try it for yourself. As you know, we all react to these powerful meds in different ways.

My sympathy to you for what must be a distressing and disappointing surprise. Maybe you'll find doctors a little more educated about the condition now than they were before, and there's a lot more information out there for you to use. Come on back and keep us posted - there's a bunch of nice people here who understand what you're up against, so we always can be counted on for sympathy! Hugs, Nancy

[Fizzbw]

Hiya,

So sorry to hear that your pain has returned - I completely understand why it is so terrifiying for you!But as the others have said, things have moved on a huge amount in 10 years, both with the meds and the surgery.

I've had 3 MVD's, the first one worked for a bit, the others didn;t - I've got a stupidly recalcitrant form of TN it would appear, so am not someone to take to heart! BUT the three op's weren't too bad - while it is a major op, they are becoming far more routine these days and the recovery times are better, and the meds they use during are better, and the techniques are much better as well.

It would be well worth getting an MRI to see if there is anything to be seen - but a second MVD, given the last one was effective, might be a good way to go - and they very rarely cut the nerve these days, so there would be no paralysis or loss of sensation generally.

But you might also find that a course of meds actually kicks the nerve back into remission - so getting to see a good neurologist who is experienced in TN would be a good step.

There is hope! SOmething you can do for yourself as well is to make sure that you have good nutrition, and many people are finding that Methyl B12 is helping their pain. At the 5000mcg dose, and must be Methyl.

I really hope that this is just a little blip for you and that the pain retreats again.

Big hugs

Niki ***

[bilateral]

Hi,

There is not much that I can add to the above, but I do hope that you will find a way forward soon and that you will let us know how you are doing.

Take care,

Anne

[ella138]

When I had my MVD my surgeon said, "why wouldn't you opt for an MVD, you could be pain free for 10 years". That number sort of sits in the back of my mind and you brought it forward.
I have done some reading, and apparently when the compression they find is because of a vein the chances of reoccurance is greater than if it is caused by an artery. The reason for this is because the vein is cauterized and removed, but veins have the ability to grow back. Arteries are not removed, they are simply moved away from the nerve and they do not grow back.
I think if you had a successful MVD that lasted for 10 years, you should definitely go back to your surgeon (if he is still around) and at least discuss it for a second time. I know the drug thing is the easier solution, but perhaps you could go another 10 year or maybe forever without taking those debilitating meds!

[EE03]

Pennyann,

I can't give you any advice regarding the MVD. As for what to do now, I would get the pain under control first. Once thats done, you can take the time to sort everything out and decide what you want to do going forward.

Take care, Ellena

[Pennyann]

Thanks everyone for your support. As for meds I remember being on Neurontin and Tegretol. Neither helped the pain and both caused me so much double vision and poor balance I couldn't do daily activities. I am going to my primary doctor first for insurance reasons. I am pretty positive he will refer back to my surgeon...if he's still around but he had partners who dealt with this too who were younger so I am imagining I will be seeing my surgeon or one of his partners.
I'm not in a hurry to have another MVD. I'm not in the mood for the expenses. But I do have money that was set aside for 'just in case' purposes so if I have to have a procedure or surgery I'll be able to make it. I may change my mind later, we'll see.
I fully expect to try a medication first and I'm willing to do that. I guess that is why I wanted to go and get this ball rolling before I was in excruciating pain everyday. I am trying to not convince myself that meds won't help or I might be setting myself up for a self fulfilling prophecy.
I did get an MRI before the MVD 10 years ago. I may end getting another I guess.

[JeanC]

Hi, Pennyann,

Sorry your pain is back. You might want to call the TNA and get the revised 2004 edition (528 pages) of Striking Back! The Trigeminal Neuralgia and Face Pain Handbook. It's greatly updated from the original and has lots of new information. Contact info for the TNA is on their Web site -

http://www.fpa-support.org/

Also, there's a TNA National Conference in Detroit, Mich. this coming September which will have lots of neurologists and neurosurgeons who will present on medical management and surgeries. I've been to two of them and they are well worth it. Also, a regional conference in NY City on May 10 which is good if you happen to be able to get to it. Conference info also on the TNA Web site.

Ella mentioned the different treatments of veins vs. arteries in an MVD. For just that reason of veins growing back, some surgeons are now padding them instead of eliminating them. Time will tell whether this extends the "life" of the MVD and keeps the pain away longer. But these are the things you can learn at the conferences.

Best wishes in your research!

Jean

[Pennyann]

I don't recall if they were veins or arteries. I just remember the surgeon saying there were 2 blood vessels. They didn't eliminate them. They put padding between them and the nerve.
After my surgery I was so happy with the results and it really changed my life so I wrote my surgeon a letter. He asked for my permission to use parts of it for a presentation he was giving at a major midwest conference so in a way I've had my 15 minutes of fame. ;)
I may get the handbook, thanks for the information.

[saraiderin]

George Wigel co-author of the Striking back book had his TN pain come back 13 years after MVD surgery. He had a 2nd MVD and nothing was found . He is back on his meds and at the 2006 conference was doing well. Medications have come far. I would consult with a neurologist.

[Pennyann]

I am going to go to a neurologist. I just had my appointment with my primary physician today and got the referral. Also started a low dose of Neurontin. So I'll see how it goes. Thanks for all of the info. It really was different seeing the regular doctor, knew what I was talking about, knew the meds and stuff, didn't look at me like I was drug seeking or attention seeking. It was a lot different than 10 years ago.

[Pennyann]

When I had my MVD my surgeon said, "why wouldn't you opt for an MVD, you could be pain free for 10 years". That number sort of sits in the back of my mind and you brought it forward.
I have done some reading, and apparently when the compression they find is because of a vein the chances of reoccurance is greater than if it is caused by an artery. The reason for this is because the vein is cauterized and removed, but veins have the ability to grow back. Arteries are not removed, they are simply moved away from the nerve and they do not grow back.
I think if you had a successful MVD that lasted for 10 years, you should definitely go back to your surgeon (if he is still around) and at least discuss it for a second time. I know the drug thing is the easier solution, but perhaps you could go another 10 year or maybe forever without taking those debilitating meds!

Ella, I noticed elsewhere you mentioned Dr. Anthony Kauffman in Canada. I am positive that was the name of the surgeon that did my MVD here in Kansas City Mo. I said it was 10 years ago but I was mistaken. It was 12 years ago. My mother remembers it was 1996.

Edit: My surgeon's name was ANDREW Kauffman. Wow, that is weird how close a name they are and for the same kind of surgery.

[Pennyann]

I ordered the Striking Back book. The soonest I could get in to see my new neurologist is June 16th but I'm afraid I'll be in agony by then. I just started on Neurontin. I hope it helps. Suddenly things are getting worse really fast. I laughed at something I saw today and regretted it. Now I can't laugh? :(

[Mrs Wiggens]

Pennyann,
Your circumstances sound so familiar. Boy, have I got a story for you. I need to let my dogs out and later today I will tell you my story.
Mrs Wiggens (AKA Wiggy)

[Pennyann]

That's unfortunate. I wouldn't wish the pain of TN, NOR the agony of doctors who don't care or are inept, I would wish neither on my worst enemy.

[bilateral]

Hi Sarah,

You wrote that George Weigel has TN back as well now, but that nothing was found during a second MVD.
I am sorry to hear that the guy who co-wrote the Striking Back book, which has been of so much support to so many people, has got TN back.

Take care,

Anne

[saraiderin]

When I spoke to him, he was doing well and was really upbeat. It was heartbreaking for a lot of us to hear his news but, his upbeat spirit was inspiring to me.

Sarah

[bilateral]

Hi Sarah,

Do you think that George Weigel would join Braintalk Communities.....?

Take care,

Anne

[saraiderin]

If asked what is the worse he would tell us is no. Nothing ventured nothing gained my mom would say.

Sarah