My family and I have been asked by many people, for many different reasons, why we chose to pursue Microvascular Decompression for our daughter. Friends and family were curious and trying to understand this crazy journey we are on. TN friends and family are looking for information and to see if there is something to learn from our thought process. Others thought we were a bit crazy for jumping straight to the big, scary treatment for TN, even doctors we were going to. But let me explain…
Before the first surgery, a rather small dose of Trileptal was managing KatieRose’s pain quite well. So I can understand the questioning. After all, if your choices are “invasive brain surgery” or a couple of pills twice a day, it seems pretty straight forward, right? But it really isn’t.
We were told we should stay on medications, and this “is a disease of desperation. Stay on these meds until they stop working. Then we will add something else in. When that stops working, we will switch to something else.” (My emphasis added.) And that was from a neurosurgeon who would not perform MVD on KatieRose, because he didn’t see a compression on her MRI. I was told this was just to be her life now. I sat in my husband’s office and lost it. I cried and sobbed. I was absolutely defeated. I did not want a life on these meds, with a future of more medications and breakthrough pain, to be our girl’s path.
We had been turned away from 2 neurosurgeons for MVD with KatieRose, so initially it wasn’t even an option. Then we cold called Dr. Ben Carson’s office at Johns Hopkins and after a consult and new MRI he told us that while he still didn’t see a compression, from her symptoms he really thought he would find one if he went in. He was willing to do exploratory MVD if we were. After recovering from my surprise (I took his call while driving down the road and had to pull into a parking lot until my brain could catch up!), and some discussions and prayer with hubby (exploratory brain surgery?!) we decided to go for it.
Following is the list of reasons my husband and I developed for pursuing MVD with KatieRose:
- There is no guarantee she is ever going to go into remission.
- If she does go into remission, it is temporary. It will come back. The longest remission I’ve read about or heard about is 6 years. It is overwhelmingly likely that, if she had a remission at all it would be short lived, in the range of a few months. Then we are right back at this decision. If she was fortunate enough to get a really long remission, that would make her how old – 16? 18? – when it came back. Is it going to come back and have us right back in this same place when she is a new driver? graduating from High School? Or maybe our remission is amazing, and it’s when she’s graduating from College? Getting Married? Pregnant with her first child and can’t be on meds to help with the pain?
- These meds are not good for many reasons. For one thing, her academics are really hurting. She has worked 3 extra hours a week with a private tutor – for three years – to read on grade level, and these meds are taking that all away. And making her withdrawn and not herself. For another thing, no one can tell me what the long term effects of this volume of medication is on a developing brain, but I can tell you no one is reassuring when I bring it up.
- We don’t like these meds, and they are escalating much more quickly than I am happy with. At this rate, there is no way these are going to be effective for the next 5 years, much less the 70 years we still have to manage TN.
- Other procedures are damaging (palliative is the medical term). That means they are going in and damaging part of her nerve to stop the pain. But they are temporary, and it is assumed the pain will return and the nerve will have to be damaged again. And again. Each successive time the nerve is damaged increases the chances of nasty side effects that include permanent facial numbness and/or pain. That is not a road I am ready to start down with my 12 year old.
- MVD *after* any of these aforementioned palliative procedures has a lower success rate, so doing any of those now hurts the chances of MVD being successful later. Depending on what it done and the progression of her pain, MVD may not even be a viable option after years of other treatments.
- Right now, she is 12 and in 6th grade, and I can carry her through this. If she misses some math class, no big deal. We can make that up. I can get her to appointments, get her home, care for her in her own home while she heals. These things won’t always be true of her life. Are we looking at juggling this surgery in college? When she has her own kids?
- MVD is the only procedure that is directed at removing the source of the pain – any compression – also preventing continued damage to the nerve. MVD is the only procedure that does it’s best to not damage the nerve in the process. MVD’s “success” is defined as pain-free & medication free for 6-10 years, which is a higher standard than any other procedure. And I have spoken with 2 people who are at 20 years and counting, and heard from another who is at 30+ years. It’s a shot.
- I understand that this may seem a drastic step. But I have to make decisions for her right now that are good decisions for the rest of her life. TN has no cure right now. I understand that. But I have to make a decision now that not only helps her pain now, but does the least damage with the long term in view.
This list of reasons still stood, even though that first MVD wasn’t successful and relapsed after 8 months. We found ourselves with Dr. Mark Linskey at UCI Medical Center for a second MVD. There is more to that decision, but that’s a story for another time.
In the interest of honesty here, the fact that we had reasoned this all out and were as sure as we could be of our decision, doesn’t mean I didn’t have some sleepless nights leading up to her surgeries. It’s a big thing to hand your child over to a neurosurgeon. Twice. There were still nights all the ‘what ifs’ plagued me. But those things didn’t change the above, it just meant I was human, and I was afraid.
I realize that not everyone is a candidate for MVD. However, I do encourage you to get a second and third opinion, at least, if you have heard that your child is not a candidate. Whether or not you are a candidate should be determined by a very thorough evaluation of your child’s pain by a top neurosurgeon who works with Trigeminal Neuralgia patients regularly with success. We will be posting a list of questions to ask a potential neurosurgeon in the near future.
I wish all of you on this journey many pain free days ahead, and a cure for us all.