Best MVD/TN lesson I've ever had!

1

Hi everyone-

My daughter is 16 and has suffered with TN for 4 years. over the past 8 months her pain keeps progressing. She is now on 1200mg Gralise and 2100mg Trileptal with break through pain. I will spare you the details of how we ended up in the office of a California doctor discussing MVD (we are from Colorado), but he said some things I had never heard:

Every pallative procedure we have done (gamma knife, glycerol rhizotomy, lidocaine, marcaine, balloon decompression, etc) leaves behind scar tissue and lesions making it HARDER for an optimal MVD surgery. Pallative measures treat the pain or symptom but don't fix the underlying problem; MVD is the only thing that does that.

I had been led to believe that we should exhaust EVERY possible other treatment and ALL medications before "trying" MVD but what I heard from him made sense. If you have to work around scar tissue, lesions or damaged tissue that would make a neurosurgeons job harder. And the medicines make you a zombie because it depresses the electrical activity of your brain-- I wonder how my daughter functions and I know all TN sufferers struggle with that.

Also-- just because most neurosurgeons know HOW to do MVDs doesn't necessarily mean they SHOULD do MVDs. Experience counts. Know how many they do a year, how current they are, when and from whom they learned the procedure, and if their entire OR staff has experience with MVD.

I just thought this conversation led me to questions I would never have thought to ask before-- hope it helps others considering MVD!

Stacie

2

I as well thought treatment would be least invasive procedures to the last resort- MVD. I thought this (having spoken to several doctors) until I spoke with my neurosurgeon, who told me (for my case, obviously not for all cases) that first stop would be MVD and if that failed, he discussed still doing another one as a first option before resorting to gamma knife and other injections. Its amazing how these options differ among doctors. Best of luck to your daughter!

3

Thank you for sharing . I am truly very sorry that your daughter is still suffering. The points you bring up are very valid in my opinion. Once medicines are tried to alleviate the pain and are not successful I believe one needs to look VERY seriously at MVD surgery. It doesn't damage the nerve as other procedures do and it can FIX the issue

My thoughts are with you and your daughter,. Good luck

4

Your doctor is 100% right on both counts. The only way to "FIX" the proble is through MVD. MVD will result in surgeon moving arteries and or removing veins that are causing the pressure on the nerve. No other procedure aims to repair what is the cause of the problem and scar tissue does make MVD less successful. I also agree he is 150% right when he says experience counts. In most cases this is a one time shot and the smallest of errors can affect you for life or make surgery ineffective or not as effective as it could be. The meds do make you a zombie and typically over time the dosage increase and the effectiveness decreases. I feel terrible thinking of a 16 yr old going through this type of torture. Knowing what the pain is like and thinking that my own kids or grandkids could get it makes me sick to my stomach. God bless her and good luck hope she gets a resolution soon.

5

Just wanted to send hugs out to you, your daughter and family. It is hard enough to deal with TN as an adult, but going through all that is adolescence and adding TN?!?!? I'm so glad she has you to support her and love her as she finds the best avenues for her to take.

Pam

6

Thank you so much for sharing this. I have read in several articles MVD is better if done prior to other procedures due to the scar tissue. I’m going to print this and show my doctor. I am praying for this young lady and all that have this difficult health condition. It took years for doctors to diagnose me. I am so glad much more awareness. There is Hope!

7

Stacie, I agree with what your doctor has stated 100%, I would however like to mention that although compressions on the trigeminal nerve are a “suspected cause” and decompression can result in 100% pain relief …

NOT everyone’s TN is caused by compression and NOT everyone who has MVD will see 100% results.
Long term damage to the myelin sheath can hinder the results of MVD, even that is a guess…most neurosurgeons still can’t adequately explain why…

“They” don’t really know why some people with a successful MVD have 100% pain relief and others do not.

In my case, I had a successful MVD, 3 compressions successfully decompressed…I still have TN, back on 3 meds at high doses (at 9 months post-op) I experienced 4 months pain free, during those 4 months I was able to wean off of 2/3 meds but needed to stay at 1200mg Tegretol to experience complete relief.
My bilateral TN pre-MVD was refractory ( resistant to meds).

If MVD were the answer for everyone it would be touted as the CURE. It is not.
Currently, MVD is our BEST chance for a better outcome with our disease course…yes it is invasive surgery, but out of ALL the options available to us it is the least damaging to our nerve.
My personal choice was MVD for just that reason, it should in my opinion be everyone’s first choice. I wanted my nerve intact and nothing “messed with” keeping in mind that a cure is on the horizon and I want a huge chance to get that cure by having my nerve as is ( but without compression).

I have no regrets having chosen MVD and would do it again in a heart beat!
Some might not consider my outcome successful, but let me tell you it was/is.
My progressing TN pain was resistant to meds for over 9 months, I don’t know how I survived…although my pain has worsened and I’ve had to increase the meds, I still have moments of minimal to no pain. THAT is better than 24/7 horrendous pain pre-MVD.

An experienced neurosurgeon is very, very important.
I always advise everyone to read and research ALL you can, not just studies, but actual personal stories of our members.
We are very fortunate to have members who’ve had 100% pain relief from MVD who still encourage and share on these forums and offer hope.
Just be open minded when reading everyone’s experiences and be realistic in your expectations.
Our collective hope is that we ALL can stop suffering and we must ALL continue to share, support and learn from each other…

Stacie, I pray your daughter finds long lasting relief …positive thoughts!
(( hugs )) Mimi xx