Why Isn't Every Sufferer Waiting To Have MVD?

Is it that it costs so much? Is it that not everyone can be a candidate because of health reasons? It seems to me that there are many of you are content with just living on medication rather than seeking the cure. Forgive me if I'm out of line but I'm new to this association, having attacks every five minutes for the last 5 days, meds don't seem to be working at all, and I'm just hoping I can have something to look forward to and enjoy life again.

Not every doctor will do an MVD or Gamma Knife. After reading the stats and patient recoveries. I wouldn't even explore this as an option. I'd read through some of the articles here and stories of members before making such a blanket statement. I have insurance, but using it on something risky that could disable me isn't exactly a cure let alone and option.

There are many reasons people run to MVD - and stay away from MVD - here are a few that I can think of:

If you have type 1 - MVD success rate can be around 90% successful - Type 2 is a lower success rate

Some people are deathly afraid of surgery and wish to manage with meds

For some, MVD not a good choice because they have had maybe 2 or more proceedures that damage the nerve and make MVD less successful

I'm sure Insurance plays a part/ or lack of for MVD -- mine was $35,000 -- we paid $500 - Very Blessed

Hope this helps! Do your research on here - knowledge is power - and only you can make the decision.

Kimberly

Hi Gogi

The 2 previous answers give great examples of why surgery is not always an option for some. I believe all patients with ATN should make a very considered choice before surgery as it will not help some at all. Others may have reduced success. Type l TN has a much better success rate. However in the UK you have to be referred before surgery is an option. My neuro will not refer me while she can control me with meds. So that accounts for a small percentage of members. It may be age and suitability. Not everyone has the health to withstand any operation. Also there is the sheer fear factor. I have spoken to many members here who say they would never be operated on for their condition. It can be complex and I am sure we each have our own uniue reason which may cover one or more of the reasons we have given up to you. I am no stranger to the operating table and do not have the fear of many yet when I have spoken to friends about how I would have it done in a flash when my pain is very active they look horrified as if I am crazy to even think of such a thing. That gives me insight into how many people do think about an operation on the head area. It’s very complex.

Jackie,

I didnt realise it was your Neuro who decided if you were able to have surgery here in the UK.

I thought it would be the patients choice.

The reason I am surprised is I have read an MVD is more successful if it is performed within 7 years of developing TN. Therefore there would be a reason why you could request it even if it were being managed by medication.

My Neuro did say to me it is the last resort. Is this just because of the cost involved? If it is Classic TN1 and there is a blood vessel touching the nerve, then surely it would be within the patients right to request an operation if they wanted it?

Greetings Gogi.

Welcome. In response to your question about meds:

Gabapentin 600 MG 3x a day

lamotrigine (lamictal) 100MG 2x a day

oxycodone (5mg)..when necessary..so, when my facial pain symphony begins to hit sour notes or when the facial musicians go" high-note" over the top electric, The" Maestro Oxycone" horefully settles them down. The orchestra, sometimes takes a while to settle down.

My meds, mostly have things under control. I usually have low-grade manageable pain. But,that tooth-brushing, eating,talking too much, cold weather,walking, sleep depriving, depressing Conductor occasionally and unexpectedly takes the podium and strikes up the band.

Ah!, the Mysteries

Gogi, there's a fair amount in our Face Pain Info tab on the menu above, which is pertinent to your questions. I will say that many patients seem to have a disproportionate fear of so-called "brain surgery" (which strictly speaking MVD isn't quite). And this isn't to pick on anybody, please understand. Only to add a sense of perspective founded on 16 years of research and talking with over 3,000 pain patients.

However, the earlier observation is pertinent: Patients with Type I TN, or neuropathic pain dominated by Type I symptoms even among other pain symptoms, will tend to do better in MVD if it's done in the first seven years after pain emerges. This observation seems to support the theory that trigeminal nerve pain will tend to be progressive and to cause progressive damage over time, accumulating CNS toxins when pain is allowed to persist without adequate management.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN



ElstepI have no idea if I can request an operation. However it has been suggested to me with my conversations with her that it remains her choice and as I said she is reluctant to refer me when I am managed with meds. I agree with Red, we read a lot of mail from patients on here, Red more than me I am pretty sure. Many people are very fearful of surgery above the shoulders and it is perceived as brain surgery even though it is not technically. It is a costly operation and in my case there is not a vessel on the nerve, just in the vicinity. As I am well managed at present I don't feel the need to be assertive in pushing for an operation. When my pain is bad I would have it with 2 minutes notice, I don't feel quite the same when it is under control.
elstep said:

Jackie,

I didnt realise it was your Neuro who decided if you were able to have surgery here in the UK.

I thought it would be the patients choice.

The reason I am surprised is I have read an MVD is more successful if it is performed within 7 years of developing TN. Therefore there would be a reason why you could request it even if it were being managed by medication.

My Neuro did say to me it is the last resort. Is this just because of the cost involved? If it is Classic TN1 and there is a blood vessel touching the nerve, then surely it would be within the patients right to request an operation if they wanted it?

Even in the US it is not a patient choice. I don't even know if it is a neuro choice, but an insurance choice. The insurance company may not cover it. In the US, you have to definitely exhaust all other options first. I had insomnia for years, and I had to go through years of "other" treatment before the insurance company would cover a simple sleep study... let alone a procedure where the doctor is cutting into my head.

For me, I am highly suspect of something that does not have a better success rate. I don't want to be disabled for life.... Also, I fully admit that cutting into my head is intimidating. So, I am going to exhaust all other options first.

I have had the MVD surgery (my insurance paid for it…it cost me $5) but, I will be honest with you and tell you that it was the MOST miserable experience I have ever had, and it didn’t work. My symptoms were better for a time, but now that are back, and it full force. I take a truck load of Trileptal and am now considering the Gamma Knife. I dont know what else to do. I am 41 and have been strugggling with this for a veryyyyy long time.

Many of us aren't candidates, but would love to be. I think you're making a pretty big generalization to say most people love to stay on meds. Perhaps you should do some research about something you clearly know nothing about.

And some people might be afraid of that surgery, BECAUSE IT BREAKS THE BLOOD BRAIN BARRIER. I think it's safe to assume you don't know what that means, please look that up too. Elderly patients, or those with weak immune systems cannot have the surgery because of this -- it's a really big deal.

I had no symptoms until "IT" happened. (January 15, 2007)

I was content with Tegretol until I developed Toxic Epidermal Necrolysis. (March 2007)

I was content with my MVD until it failed two weeks to the day after. (November 2007)

I was content with my first SRS until it failed two weeks to the day after. (April 2008)

I was content with my second SRS until, well, (August 2008?) when you take 51 pills each day, you really don't have a perspective that it failed, until "IT" happens.

Currently taking Baclofen 40mg, Gabapentin 2,400mg, Keppra, introduced in April, is being titrated - it's "What's Bothering Bob", lately.

Knowing the scoreboard, when "IT" happens, I am content - Waiting, bob

I appreciate all the responses to my questions. I do apologize if I offended anyone as I was speaking under pain and hopelessness. Yall did make things a lot more clear. I do sympathize with each and every one of you and hope we can get through this together.

Istill am wondering if a a third MVD would be the answer for me. Would a third time be a charm? I have taken alot of medication and Tegretol is the only one that has helped. I was taking between 200 to 400 mg. this past summer, and am now taking between 800 and 1200 mg. I have read that it is just a matter of time before the meds do not help because the pain becomes so intense that in order for them to help you would have to take toxic dosages. This is very depressing and leaves me to feel like an MVD may be the only thing left to try.

I also wanted to add that MVD - on a scale of 1-10 , ten being very painful, risky, recovery time, etc (on average)

MVD is a 1. According to my Neurosurgeon

I am scheduled for surgery on the 6th of jan and i really need to hear from some people that this surgery really worked.. i am on ■■■■■■■■ mg of carbotrol a day. i can function with this amount but i am also afraid of the side affects from taking too many meds. my neurologist wanted to keep me on the meds for ever if he could. so i got a second opinion and he is a specialist here at Baylor medicine in Houston. Please i need to get some positive feedback if at all possible...thanks.

I have had a MVD, which left me deaf and my balance gone, my TN returned after 2 years, I would never even consider another one, my pain is awful at times worse in winter. Believe me I think everyone with TN has tried or read about every treatment. I am ready to climb walls at times and the medication I am on is very high, but not working. What do I do?.

bet6252, if I had TN type 1, with a compression visible on the MRI, I would definitely have an MVD.

I know this thread has scared you because people have written about their failed procedures. Do not let that scare you. Many people have had successful MVDs, and most of those people have put TN behind them, and no longer need nor want to participate in these types of message boards. So unfortunately, you're reading all the bad outcomes, as opposed to the many, many successful ones. Please keep this in mind and do not let it add to your stress. I do know a few people on Facebook that had MVDs and are still pain free after a few years.

It's natural to be afraid before a major surgery. The anticipation can sometimes be the worst part.

We'll be thinking about you. Please keep us posted after the surgery, when you feel ready. Feel free to message me if you want to talk to someone, either before your surgery, or after. I'll be thinking about you and sending you positive energy from California.

Hi Crystal I agree with everything you have said.

Unfortunately for Margaret there is never a 100% success rate with surgery. I do feel for you Margaret.

Good Luck Bet, we will all be thinking of you on the 6th, positive energy also coming from the UK!

Margaret which hospital in the UK did your MVD?