Wrestling with the decision

According to my neurosurgeon, I am "perfect" candidate for MVD (even though the MRI shows no compressions). However, I am managing pain effectively with medication. Relatively speaking, minimal side effects. My memory is shot, I have trouble focusing, exhausted all of the time and occasionly throughout the day I get that stoned feeling (funny how there was time in my life that would not have been a negative). Makes work difficult but no impossible. I know by reading the posts here that I am very lucky compared to many of the people suffering from this disease.

My problem is that both my neurosurgeon and neurologist describe this as a progressive disease. I have already gone through two medications failing after initial success. In the back of my mind I am just waiting for this one to fail. So I wonder, should I go through with the MVD even though I am pain free or do I drag out the medication process? I have three young kids and there is always risk from surgery. Is it fair to them take that risk if I can manage to get through the day. I am honestly petrified of the pain returning. Am I being selfish in seeking a permanent solution when I can live with the temporary?

Any thoughts are appreciated. I am grateful to have this forum.

Thanks in advance

Lex, I understand your conundrum! It’s such a personal choice.

But let me give you my personal opinion…

There currently is NO permanent solution ( cure) for TN.

It’s so important that we ALL understand this especially when considering different procedures for TN relief.

In respect to MVD, it is the only procedure that when done by an experienced neurosurgeon is NOT damaging to the nerve.

Every other procedure does damage to the nerve.



All of the procedures available can offer pain relief BUT the time periods of relief vary, from days, weeks, months and if we’re lucky years!

There are NO guarantees.

Each procedure has its own risks that need to be well researched and understood prior to choosing.



Knowledge is power. Read everything you can not just here at LwTN but everything google can find for you…



TN is progressive. There are no 2 cases of TN alike, so hard to compare to one another because there are so many variables, we share similarities but that’s it. Outcomes, prognosis is highly individual.

Some experts have said that having MVD early on in your journey with TN offers better results, on the premise that the nerve hasn’t sustained years and years of damage.



All the other procedures are less invasive than MVD but again no damage to the nerve is incurred if you have a highly qualified surgeon who specializes in TN.

I’m not against the other procedures, although I know it sounds that way, many people have achieved relief from pain from the other procedures and not everyone can have an MVD.

It’s just my personal opinion based on my own research that MVD was the right choice for me.

My neurosurgeon advised me against any nerve destructive procedures for my case.



My left side TN2 progressed, ( I’m bilateral) and became resistant to meds.

I needed to research and consider all my options because I did not want to make a decision out of desperation. Had I put it off just another month later, my decision would have been a desperate one. …my pain went from 0-60 and each day was worse than the last. I still don’t know how I survived it.



Many people experience remissions too. I was so lucky, I had an 8 year remission on my right TN1 side and a 10 year remission on my left TN2 side.

One last thing, when I asked my neuro for a referral to a neurosurgeon, he agreed but didn’t think the NS would be able to help me, but he encouraged me to get an opinion. I made sure to get a few consults in before I chose my NS.



So my advice, read and learn as much as you can, get some consultations with neurosurgeons, gather all the info and then take your time to make a decision that feels right for you.



Please remember there are no guarantees, there are many success stories, but there are also many who have achieved no pain relief from one or more procedures.

As long as you understand that it will make it easier, realistic expectations. Doesn’t mean we can’t have hope and truly believe a procedure will help us, we have to have HOPE.

This is what’s available to us until more is known about TN and a cure is found.



I wish you all the best, feel free to message me anytime,

Huge (((( hugs )))), Mimi xx

I was 33 years old and a father of 2 boys when I had my surgery. I had suffered with TN for 8 years and was able to function working at a job where I managed 75-100 people. Though the pain was unbearable noone can understand what you are going through except someone who has experienced TN pain. In my case it was a disease that was progressing with more and more episodes and less and less periods with no episodes. Medication was minimally effective and at the end I was on the highest level allowed of Tegretol. I got all of the odds from the neurosurgeon as far as the potential outcomes but felt the reward far outweighed the risks as he was very positive that he could help me significantly . I knew that I was getting to the point where I wouldnt be able to continue working or be of any use to my family. Understand that results can vary but I had mine MVD done 30 years ago and have been totally pain free since. Was blessed to have another son and 5 grandkids none of which I feel I would have seen without the surgery. Not to be dramatic but this surgery gave me my life back and my only wish is that I had found a this doctor 5 years earlier. Talk to a highly qualified neurologist who has lots of experience performing this surgery. For me I knew it was 100% the right thing to do . Gather all the facts and Good luck and God bless

Ed

I tried 3 meds within months… One year after TN jit me, I hit the operating table !

I was tired of side effects…I wanted my life better…so I flew from Missouri to Michigan for the top dog of MVD

2 yrs later…I’m 95% better…if MVD within first 3 years caught … Can score a couple more points for odds in your favor…progressive it tis!

Best doc…best odds!

Lex,

I took meds for 6 years with periods of remission up to 3 or 4 months at a time. When my neurologist suggested moving ahead with the MVD a couple of years ago, I hesitated because I was occasionally pain-free. Then suddenly, the meds quit working altogether last January. I found myself in an emergency situation with no choice but to have the surgery immediately. Fortunately circumstances worked in my favor and I was able to have surgery quickly with a highly-skilled surgeon. I have been pain-free for almost 9 months and now have my life back (no more meds at all).

Considering my great outcome, I now wish I had had my surgery sooner so I could have done it on my own terms (not emergency situation). You have to make you own decisions about what's right for your treatment, but just be aware that the meds can stop working very suddenly when the nerve damage gets to a certain point. Don't worry about anything showing up on an MRI. It rarely does.

Brownkat

What Min said:D

I would also like to point out some thing else for you to consider because you mentioned you are worried with the risks with an MVD.

Every day we face risks; risks that could affect us; financially, mentally, our family, our neighbores, our cars, homes, pets, material possessions, our faith, employment, careers, environment, food, our communities, marriages, and our health. Everything you decide to do is a risk, even just driving to the store. Although some decisions may seem more riskier then others there not really. Having an MVD done could be an amazing thing done for and your family, as it might give you some added bonus time to be pain free for a bit. It might not be. But you will need to base this after with speaking with several very good neuro surgeons. Don’t base this desicion on the what ifs base it speaking with conversations you and your husband have had with a few different neuro surgeons and the information you have looked found out on MVDS. You can also think in terms if you TN progressed quickly and medications stopped working as well as they do now what if your chances for a sucessful MVD were lowered how would it affect you family at that point and prior to how will it affect your family during this time of the medication roller coaster and dosages that make you loopy?

Really I’m not trying to sound mean just to think in larger terms a bit and to remember we take chances every day. The other thing is you have a great opportunity to be able to make a very informed decision, as the pain is controlled and you’re not having too many side effects from the medications. So take some time even just a little bit each day and really look into it and look up doctors the you would safe in their hands for it. Don’t waste the time and make the desicion in haste because the pain is through the roof. That’s never any fun.
Don’t be afraid to ask questions to other here, just make sure to search in other places too for info on this procedure as well. I wish you the best of luck with this. Please keep us all updated on what you decide to do. Have a great day that is pain free.



Mimi said:
Lex, I understand your conundrum! It's such a personal choice.
But let me give you my personal opinion.....
There currently is NO permanent solution ( cure) for TN.
It's so important that we ALL understand this especially when considering different procedures for TN relief.
In respect to MVD, it is the only procedure that when done by an experienced neurosurgeon is NOT damaging to the nerve.
Every other procedure does damage to the nerve.

All of the procedures available can offer pain relief BUT the time periods of relief vary, from days, weeks, months and if we're lucky years!
There are NO guarantees.
Each procedure has its own risks that need to be well researched and understood prior to choosing.

Knowledge is power. Read everything you can not just here at LwTN but everything google can find for you....

TN is progressive. There are no 2 cases of TN alike, so hard to compare to one another because there are so many variables, we share similarities but that's it. Outcomes, prognosis is highly individual.
Some experts have said that having MVD early on in your journey with TN offers better results, on the premise that the nerve hasn't sustained years and years of damage.

All the other procedures are less invasive than MVD but again no damage to the nerve is incurred if you have a highly qualified surgeon who specializes in TN.
I'm not against the other procedures, although I know it sounds that way, many people have achieved relief from pain from the other procedures and not everyone can have an MVD.
It's just my personal opinion based on my own research that MVD was the right choice for me.
My neurosurgeon advised me against any nerve destructive procedures for my case.

My left side TN2 progressed, ( I'm bilateral) and became resistant to meds.
I needed to research and consider all my options because I did not want to make a decision out of desperation. Had I put it off just another month later, my decision would have been a desperate one. ...my pain went from 0-60 and each day was worse than the last. I still don't know how I survived it.

Many people experience remissions too. I was so lucky, I had an 8 year remission on my right TN1 side and a 10 year remission on my left TN2 side.

One last thing, when I asked my neuro for a referral to a neurosurgeon, he agreed but didn't think the NS would be able to help me, but he encouraged me to get an opinion. I made sure to get a few consults in before I chose my NS.

So my advice, read and learn as much as you can, get some consultations with neurosurgeons, gather all the info and then take your time to make a decision that feels right for you.

Please remember there are no guarantees, there are many success stories, but there are also many who have achieved no pain relief from one or more procedures.
As long as you understand that it will make it easier, realistic expectations. Doesn't mean we can't have hope and truly believe a procedure will help us, we have to have HOPE.
This is what's available to us until more is known about TN and a cure is found.

I wish you all the best, feel free to message me anytime,
Huge (((( hugs )))), Mimi xx