We had a thin slice MRI looking at only the Trigeminal Nerve done for our daughter and sent the scans to her Neurologist, Dr. James Goodrich at Montefiore Health Center in NYC, and to Dr. Ben Carson at Hopkins, all of whom have met with KTRose previously. Radiologists and thus her Neurologist (pediatric neuro, admittedly not much experience treating TN) said the scan was good, and it showed no compressions, so stay on Trileptal and no surgery. But then we got a call from Dr. Carson's office the day he saw her scans saying that while there is no compression, he sees a vein traveling along the nerve, and given her typical TN symptoms he is confident he can perform MVD and give her relief. He's not promising total, but he believes that it will help significantly. So after a week and a half of discussion and wrestling with it, we set a date for her surgery yesterday - it will be Dec 4th. Now, this morning Dr. Goodrich called (after being MIA thus far re: scans) and said the scans are very well done, he could follow the nerve all the way from base of spine up through meckles cave, he sees no compression so no surgery and stay on Trileptal. We should keep Radio Rhyzotomy and Glycerin injections in reserve for if/when her pain becomes unmanageable.
Has anyone else run into this conflicting advice from top docs? I'm so frustrated. My gut says go forward with Dr. Carson and MVD, it's the only hope we have of a fix at this point. And the two patients of Dr. Carson's I've talked to rave about him. But I was *really* hoping for more agreement on something this major!!
Also, Dr. Goodrich told us that this 'disease' (his word not mine) behaves differently in children than in adults. And that while rare, children can go into spontaneous, PERMANENT remission. Anyone else heard this?? I haven't heard this before, anywhere, and I feel like I've read everything I can get my hands on about TN.
Appreciate feedback all!
Wow. That sounds very confusing and frustrating. I personally would read some of the MVD results people have had on here before making that decision. Every surgery comes with risks and she is so young, it may be worth the wait until she's older based on some of the opinions but being a child and missing out on a lot of things is also a sad thing. Good luck with whatever you decide!
Hi, I can completely relate to your “indecision”…I can only imagine if it was my child I was deciding for and not me.
Here’s what I know so far to be true ( for me);
~ there are NO guarantees, I think it comes down to a “gut” decision.
~those of us contemplating these surgical decisions are reading and researching as much info as we can, and based on what I’ve read I realize it really comes down to a personal decision and what I’m willing to go through and try to achieve relief from this pain.
~ there really is not enough research to have a concise agreement from all our specialists and according to my neuro surgeon, there is really no way of seeing clear compression on imaging tools that we use today, veins and arteries are supposed to be beside the nerves, ( on here I read contrary to what my NS says regarding imaging, so many people have stated that their compression was visible.) this is confusing to me. There’s damage to our nerve processing correctly due to the damage to the myelin sheath, what’s causing the damage to the nerve?
Apparently compression for many people, for some it’s MS lesions, for others they have NO idea…
~ My decision would be to have the MVD however I have a few other issues to sort out prior to giving a firm yes. I am also 40 yrs young, and having terrible trouble getting pain control, my TN is becoming harder to manage with meds. The high doses of meds are affecting my ability to function. So I would try MVD for me.
~ something that comforts ME is that if I were to go ahead with MVD and there is NO compression found my NS said he would NOT touch anything, just close me back up.
( I really don’t want my nerve touched or anything else up there if not necessary )
So…all that being said , it is such a personal decision, I don’t know or haven’t come across anything that suggests that children can go into permanent remission, but this doesn’t mean it isn’t true…
Go with your gut, I’m afraid that’s all any of us can really do…
I wish there were more clearcut answers for ALL of us, but when I hear of a child going through this it just breaks my heart for her AND for you.
Huge (((((((( hugs ))))))))) as you try to make a decision, I’ll be praying for KTRose and you, Mimi
After researching for a year this is what I know
If you do other procedures first / any subsequent MVD is less % great
If you do an MVD - do it early in the TN stages
PLEASE google Dr. Ken Casey -- he has a website with an office email and a personal one
email the personal one with your quandry. There is no charge for email consulatations
I picked him because he learned under the inventor
of the MVD. I am one year today and pain free. He's done thousands of them.
And are you ready for this? He NO LONGER does MRI - patients story/symptoms are how
he bases on what is best for the individual !!!! He does not rely on picts of compressions period.
I flew from MO to MI to have my MVD and so far so good.
He will consult by email with questionaires and follow ups before you even decide.
He is caring and funny and personable and VERY intelligent and experienced in this.
Keep us posted!
This is going to sound weird, but I am asking because she is so young - are you sure that it is Trigeminal Neuralgia? Did she have any trauma to the face that you know of? Any type of accident? With them not seeing anything on the scans and if she did have a fall or hit to the face, she may actually have Trigeminal Neuropathy. That is what I have. Basically all of the same symptoms but the cause of it is known and it is direct damage to the nerve which means MVD and other surgical procedures can't fix it. The med combo has variations, too. Some of the TN1 & 2 drugs used are the same also but with varying results. I would hate for her to have an unneccesary surgery and a lot of doctors don't differentiate between Neuralgia and Neuropathy.
I've been studying the literature of trigeminal pain for nearly 18 years. In all that time, I have never heard of a case of spontaneous permanent remission. Not ONE, in either kids or adults.
Another factor to take into consideration is that there are a few case reports of patients who had a blood vessel actually grow THROUGH the nerve, running parallel for a short distance. The best practice for use of MRI is to regard it as a confirming indicator that eliminates issues like tumor, cyst, aneurysm, or AVM - - but not as a definitive diagnostic tool to indicate "you have TN" (or you don't). Absence of a vascular compression in MRI is NOT a guarantee that none are there. It is fairly common to find compressions during the exploratory phase of surgery that weren't detected previously.
Go in Peace and Power
I wish you all the best with this. So tragic to hear of this affecting your young daughter.
I had MRIs read as normal by radiology, but when I saw a neuroligst and neurosurgeon at Mayo clinic they both saw a vessel running with the nerve. The neurosurgeon I met with recommends MVD as an option and I plan to undergo this 12/2012. So yes, there can be conflicting evidence based upon who reads imaging. Top docs will do MVD based upon symptoms alone.
I’m so sorry for your little princess! I have not heard of any of this. But little darling KTR you will be in my prayers. Your Mummy is being strong & trying her hardest to make the right decisions! Be brave gorgeous baby girl! Hugs to you bunny! Lots of love & hugs & kisses. Sally
KTRs Mom, I have two daughters & can’t begin to imagine what you are going through.
My thoughts are with you. Love Sally