research MVD

[bilateral]

Hi,

I have been reading the forums for the last four tears or so now.
During this time I have noticed some changes, not only in members coming and going of course, but also in the type of posts.

There used to be many posts about meds, meds combinations, ways of coping with TN, and also people mentioning researching the various surgeries, especially the MVD.
These days there do not seem to be many posts anymore from TN - ners who research the MVD and who post some of their findings.

Do those on the forum who are contemplating the MVD still research the MVD and the potential consequences?
I am wondering too whether the neurologists and neurosurgeons discuss the potential consequences of the MVD and whether the neurosurgeons talk about their own success and failure rates re this surgery.

Take care,

Anne

[bilateral]

sorry about the spelling mistake: tears is meant to be years of course:-))

[baywatcher]

Anne, I don't know whether the MVD has become common enough to seem like standard treatment - in which case maybe people are settling for the information that is most widely available instead of digging stuff out the way they used to. There are so many more surgeries done than there were even a few years ago, when I felt like every patient who opted to go that way was a bit of a pioneer. It's done in more places; do many people choose something close to home? Or do they find the surgeon that they believe gives them the best chance of a successful outcome and travel to wherever that person is working? I see what is posted here and it makes me wish that more of the real success cases - like Ella - would hang in here and at least offer some insight into the process. We get a pretty skewed picture if the only things we hear are from the disappointing to disastrous side. Those are important too - it helps me to question exactly what the statistics are telling us. What's a success? I always thought it was no drugs and no pain, but that isn't the way everyone defines it. How far does "success" stretch - does it cover any catastrophe as long as the patient lived through it? Is it a success if it is great for a year or two and then ***bingo! back it all comes? I have a friend who had a great outcome and was ecstatic to get her life back. Sorry, such a bummer, but about 14 months on and it was pain and drugs again. What's the cutoff for "success"?

There are a lot more questions in my mind than answers. Perhaps some of the forum family here would share a little about their own decision making processes, how they chose their surgeons, what their expectations are/were.

I've been so lucky, finding the right diagnosis immediately, finding the right med (only one bad experience), learning to deal with side effects. So often posts come up with questions that I can't even attempt to answer. (Makes me feel like a cheerleader sometimes instead of a resource person.) Thanks for pointing out your observations; maybe some out there will fill us in a little. Nancy

[annmeekr]

i started with pain meds but became so druged up that i had no life at all except sleeping my life away .......i also was so depressed...........also that same year i became a grandma an there was no way that i was gonna miss out on bein with him so i said i was gonna do the MVD.....i was only told a few things that could happen one was lose hearing in my ear ...an other was death...well i lost my right side of my face to numbness...an half of my tongue also so i bite my tongue daily but i don't no it till it swells up.........my Mvd was Aug 18 2006.....still pain free.......but numb:rolleyes:

[bilateral]

Hi Nancy,

You raise some very interesting questions and I really hope that more people will reply to this thread.
It might be possible that we get a skewed picture if only those who have disappointing or bad results post on the forum after the MVD, but on the other hand, there must be many patients out there who never post on any forum and who have either good or bad results, that we never get to know about, so that possibly it is quite common that there are more problems after the MVD than we realize.

I share your questions regarding the definition of success.
I also wonder whether neurosurgeons still warn TN patients about all the risks, or whether they only do so if asked.

A couple of years ago my neurologist mentioned that I could have the MVD, but did not say anything about the risks. Luckily I had done a lot of reading by then and was aware of the risks. But it makes me wonder how many TN patients are not told about the risks either?

Hi Annmeekr,

I can understand how you came to a decision to have the MVD.
I am sorry to hear that you now suffer from numbness - but glad that you are still pain free.

Take care,

Anne

[saraiderin]

When I did my research I found a journal article that Dr. Burchiel wrote that described the MVD from the MRI to the last post sugery stitch. I will see if I can not find it again. It is best to remember that this is a major surgery with major risks. I will see what I can find. Sarah

[bilateral]

Hi,

As part of this thread, how many years have people had TN for before deciding on the MVD?
I think there are some interesting issues raised in this thread and hope some more people will respond.

Take care,

Anne

[SwTPeA]

If you are considering ANY medical procedure or surgery YOU ARE RESPONSIBLE to research and ask questions BEFORE!!!
I had TN for a year and half before I had my MVD and I researched it for almost all of that time... I would have rather died on the operating table than live with those electric shocks that made me want to disapear off the face of the earth.
I think another important factor is who your neurosergeon is and how experienced he or she is. Research is an important part of life, not just for surgery, but for foods to what car gets the best gas milage. I doubt most people go into a MVD not knowing risks and side effects...If your a member on this forum you have read all of the posts, you know.

[EE03]

I feel compelled to respond here. Although I am totally for being informed and I do a lot of research, not everyone has the ability or know how to do it and laypeople don't have access to medical sources like doctors do. Any patient shouldn't go into any surgery without having all their questions answered, and if they aren't, then they should refuse to sign the "consent" document that the hospitals give you to sign. Researching just the posts on this forum or others like it isn't sufficient. And more importantly, Doctors have a legal responsibility to inform patients of risks and complications associated with any procedure and they have the knowledge, resources, and educational background to do so.

I've posted previously about two neurologists I have treated with who strongly recommended that I undergo a rhizotomy. Not one of them told me what I could expect regarding the effect the surgery would have on me, given my condition. It was, for the lack of a better description, a quick fix without any thought of the future repercussions. When I spoke with the neurosurgeon in January, it was then that I was told that it could take the pain away, but given my age, the pain would return and would probably be worse than it is now. I was seeing the surgeon just to find out what surgical options would be available for me when the time came that medical management wasn't possible, not for booking surgery. He was very honest and helpful and I see a huge contrast in what he told me as opposed to the other advice I had received.

I believe the reason Anne started this thread was to share information that others have gained from their experiences. It seems to me as though people are deciding on MVD's pretty early on and not necessarily waiting until they have failed medical management. As anyone who has come to this forum knows, TN is rare and support groups are invaluable, but they aren't everywhere. The information that other sufferers share currently and previously has been a tremendous help to me, and others, I'm sure.

ellena

[saraiderin]

I agree with everything that has been said here. Yes, it does fall on the patient to do their homework but I agree it does fall on the doctors to fulfill their legal obligation of 100% informed concent. I am going back through my notes. I can get very technichal, like the paper by Dr. Burchiel or more "layperson" friendly like what is in the "Striking Back" book. One thing I have come to learn is that the outcomes can be very different between person to person and doctor to doctor. I know one doctor who does a lot of TN proceedures but would not recommend him. I know of a number of doctors, who have not done as many but, are doing the latest techinques and would recommend them highly. Not only have I researched the MVD surgery it's self but, have done a lot of homework of when and how to taper off my TN medications post-op as this can make a difference also in long term sucess. I had a neurosurgeon tell me I was very well informed before I even met with them the first time. I looked at him and commented,"We are not talking about a simple surgery here. One thing goes wrong and I am toast. You better believe I did my homework." I opted to not go with that surgeon over a issue of trust. (long story.) I believe if you can not trust your surgeon, you shouldn't go to them.

I can access the database at OHSU. For me having done all the research I needed I stopped. I ended up getting rid of a lot of it as I did so much research I depressed myself. Let me know what your questions are and I will see what I can learn. One thing though. Academic Medical Data bases can get super techinal. A great resource I have found is the book, "Striking Back." Dr. Ken Casey did the medical research for it and I find it is a great tool. I used it as the starting point for my research and them went to the data bases from there to learn more.

I have seen alot of people with TN get so desperate they hurried into surgery with tragic results. Like what was said earlier, it is looked at as common treatment. What needs to be remembered is the fact this is major surgery. If there is anything I can do to help you let me know.

In answer to the question as to how long you have had TN.

Diagnosed Nov 2003
Relapsed Jun 1, 2005-present
Sarah

[bilateral]

Hi Sarah,

I am still grinning at what you said to the neurosurgeon:" one thing goes wrong and I am toast"..:-));-)):-))

You have done a lot of research haven't you?
You wrote that you did so much research that you depressed yourself. Do you mean about what you found out or about the time it took you or perhaps about being immersed in TN issues so much of the time?

I agree too that doctors need to ensure that patients can give informed consent but would hope that patients would also make sure that they find out as much as possible about the risks of the MVD and other procedures.
I find it disconcerting that there are still doctors who don’t tell TN patients of the risks of the surgery and of the potential consequences.

I think there are a lot of issues in this thread: the original ones I started this thread with, then those added by Nancy and Ellena.

I really hope that others will continue to post and describe their thoughts and experiences.
I wonder too whether there are more TN’ers now who opt for surgery sooner rather than later or whether there are still many TN’ers who stay on meds for as long as they can.

Do any of the TN patients ask the neurosurgeons what their success rate is and how the neurosurgeon defines “success”? Do any of these neurosurgeons do follow up surveys for a few years?

I think your last comment about hurrying into surgery out of despair is a major concern. I suppose the best thing would be to have a plan and a neurosurgeon we feel happy with for the eventuality of the pain becoming so bad that we can no longer tolerate it.

Take care,

Anne

[ella138]

I think if you find an experienced surgeon who has many successful MVD's under his/her belt (by successful I mean you end up pain free and medication free) and if you fall into the category of Classic Trigeminal Neuralgia, then the statistics speak for themselves 95-98% success rate. This is still not a surgery anyone should or would enter into lightly...afterall.....THEY DRILL A HOLE IN YOUR HEAD!!! However, what is the alternative, to live a life of pain, to live the life of a drug induced zombie?

You have to take your own healthcare into your own hands. You MUST do all your research, you much know who you are dealing with, the surgeon, the hospital, their policies, their stats. You MUST know what type of TN you have and what your own personal stats are.

Bottom line, you must do your homework, no matter how long it takes.
It took me 13 years to find the right surgeon, to muster up the courage. I interviewed 6 neurosurgeons before I walked out of the last ones office and said "he's the one, I'm ready". It also took me knowing that this condition was only going to get worse with time. I sailed along for years on the same dosage of medication and then all of a sudden after 10 or so years I had to go up a little, and then a little more and then I thought "why have I chosen to live my life this way"...always sleeping...always spacey...worried when the next spike would hit. Somehow I just knew I was ready. Once my mind was made up and I found the right neurosurgeon and asked him my millions of questions (don't be shy...ask EVERYTHING!) I knew I was going for it. That doesn't mean I wasn't petrified, it just means I was ready to take the bull by the horns and take my life back.

[bilateral]

Hi Ella,

You make an interesting point there in that you said you sailed along for years on the same dosage.

I wonder how many other people there are out there, who are ok on meds for years on end?

When you did go for surgery, did your surgeon have follow-up surveys for at least 5 years on his MVD patients?

Take care,

Anne

[ella138]

I went for surgery in July/05 appox 13 years after being diagnosed with TN. No, my surgeon did not have any formal long term follow-up on my condition. I had a post op appointment a few months after the surgery and then one of the interns called me about 6 months after and asked me a slew of questions about my experience and my current status. I had this done in a teaching hospital here in Toronto, so it stands to reason that an intern would call.

I did go to see him once after that because i was getting the odd twinge still. He was convinced it was not TN and told me he has never had someone who had a "partial success". You see I had TN in the V2 and V3 branch and I was sure it worked for the V2 and not the V3, but he told me I would be the first patient of his to have ever had that. He said it either worked or it didn't. He also told me not to be afraid of every little twitch and twinge, he said TN patients are so much more attuned to facial sensations that the rest of the population, and that not every sensation is TN related. He also said he would always be there for me and if I run into problems to just call and he would see me (which is not always that easy in the Canadian healthcare system).

I did hear from his secretary a couple of months ago. It was an informal call. I got along very well with her, she was amazing when I was going through this. I told her if I can ever be of any help to any of his patients, don't hesitate to give out my name, so she called just to see how I was doing and to ask permission to give out my name and email address. I also gave her the address to this site and the TNA at that time.