KatieRose's 2nd MVD

I've written before about KatieRose's journey to her first MVD.

Synopsis: First attack July 14, 2012 when she was 11 years old. She was put on Trileptal (Oxcarbazepine) and responded well to it once we got the right diagnosis. First two Neurosurgeons we went to said her MRIs were "clear" and there was nothing they could do. But Dr. Carson at Johns Hopkins said that based on her symptoms and age he was willing to do exploratory MVD. When he did, in Dec 2012, he found a major artery compressing her T-nerve, another small group of vessels attaching to it, and most weirdly, her T-nerve had grafted itself onto a membrane of her brain "like superglue."

Afterward, she healed well and quickly - my profile pic is her 11 days after that MVD. And she was pain free until August 4, 2013 when her TN came back with a vengeance.

Attacks were longer, now at 2.5-3 hours and happening every 12 hours to 2 days. And, we didn't even think it was possible, but she thought the pain was even worse. She describes the attacks as being stabbed in the face with a carving knife over and over the whole time. It's horrid and rips your soul right out to watch her go through it.

Trileptal was back and worked up to more than double the old dose. Gabapentin (Neurontin) was added, and also increased until her pain was managed. It was never gotten rid of this time, and she didn't want to increase her dosages any more, because life on the meds is no fun. Pre-Algebra on them is just mean. And no doctor had yet to give me a straight answer on the effect of these meds on a developing brain - but no one was smiling about it. So anyway, the pain was "annoying" - which she described as a pin being shoved in her eyebrow, through her brain, and out the top. And she was willing to keep it there instead of more meds. Sigh.

Another MRI, this time done at Hopkins. Dr. Carson has retired (ugh!) so we saw another neurosurgeon there. He was very nice, seemed very competent, but said her scan was clear, so he wanted to "wait and see". We were told the scan was clear and nothing could be done again by all the same players as last time.

So, on the strong encouragement of my dear TN Mom friend (whose 15 year old daughter has been pain free for the 1.5 years since her MVD), I contact her neurosurgeon: Dr. Mark Linskey in CA.

Shortened version: He reviewed her scans and called me that night at home. He saw two "flow voids", which indicate compressions, on her MRI. Yep, my first question was, "How do you see this when no one else does?" His answer: He trained under Dr. Peter Janetta, and whoever trains with him is taught to follow the T-nerve down to the root looking for compressions. Standard procedure does NOT follow it that far. This additional area is where he sees the compressions.

When we went to see him in CA, he pulled up that area of the nerve, and there they were, even I could see the compressions! (I should say, I had gone to the FPA conference, so I had seen a number of slides of MRIs of compressions for the previous few days, so I did know what I was looking for.)

Dr. Linskey also quesitoned KatieRose extremely thoroughly - beyond anything I had heard anyone do - about her pain. He got details of it from her that no one else had ever gotten to. Including me with my anal retentive pain notebook. Because of the details he got (and an additional deep ear pain she described as the worse swimmers ear ever), he was pretty sure there was an issue with the 7th, 9th, and/or 10th cranial nerves.

So she had her second MVD on January 28th at UCI Medical Center. When he went in he didn't just find those two compressions he saw, but a total of 6 compressions on her Trigeminal Nerve in that deep area blocked by the cerebellum. And he found 2 compressions on her 7th (facial) cranial nerve and an additional 2 compressions on her 9th (glossopharyngeal) cranial nerve. The 10th was acutally clear!

Again, she kicked butt healing. The start was hard, there's just no getting around that. She didn't want to open her mouth because 1. she was sure she would throw up and 2. her jaw was hyperextended during surgery giving her temporary TMJ. Her neck muscles hurt like crazy. She had a (normal) headache that was intense. But no TN pain.

Dr. Linskey had her walking in 24 hours. She was out of the hospital by the 3rd day. Weaned off all meds by 10 days post surgery and release to go home to the East coast (though we stayed b/c her 14 year old TN friend was arriving for her surgery).

She has had some "ghost pain" that is not terribly unusual. But this pain is usually about a minute in length, and not nearly as painful as previous attacks. Though it has caused her to "jolt" and drop her fork, so it's not nothing. It is also getting farther apart in occurrences, and the expectation is that it will continue to do so while she heals, until we realize it has just stopped.

That's where we are now. We all still have healing to do. There is fear the pain will return. The complete mess of an emotional roller coaster we have all been on. And not knowing anymore what 'normal' is, so I don't know how to answer anyone who asks if we are getting back to it.

But it looks like she is on the edge of remission, and we are SOOO hoping this is a really, really, really long one. Forever would be nice.

Continuing to pray for a “forever pain free” for KatieRose!
Thanks for continuing to share your families’ journey with TN.
Huge (((( hugs )))) Mimi xx

Thank you so much Mimi. It has definitely been a crazy journey, and like everyone with TN, we are learning as we go how to do it the best we can. A big detail I didn't share above is the TN pediatric community that we have really connected to through all of this. We now know 5 other pediatric patients between the ages of 13-18. KatieRose is very close to one girl, and getting to know the others more and time goes on. The other Moms and I are forming our own close-knit support group with phone calls, emails and texts nearly daily. It has been a WONDERFUL encouragement.

Plus, KatieRose was interviewed on the news twice while we were in CA for her surgery. One of the above mentioned Mom/daughter teams we hadn't known before, and saw the segment on the news while they were just in town for the week. They contacted the TV station, who got them in touch with the hospital and then our doctor - and they got in that same week to see him before they went home. He looked at her scans (which had been deemed clear repeatedly also) and pointed to issues on her T-nerve. She had her MVD last week, is recovering, and so far has been unable to trigger her TN pain either. YAY! It feels so amazingly good to be used to help get another TNer to a place they can be helped.

Thank you so much for such a detailed view of what KatieRose has been going through. I underwent CyberKnife in May 2012 and have TN pain back with a vengeance. I am now researching if another round of CyberKnife is how I should go or start finding another doctor for the surgery option. I am struggling with research of doctors who might be helpful in walking the path of options. I don't feel my current neuro has steered me wrong I'm just concerned that she doesn't have anymore options than 'here's another prescription'.

I wish KatieRose all the best in her recovery! Stay strong Mimi!!

I am just now getting on here and saw this. I haven't been on here in so long. I hope she is still doing well!