10 yr. old Son with TN
 

10 yr.old Trigeminal Neuralgia
Our son is on tegretol/indocin with only some relief. We are looking for recommendations for a neurosurgeon who does the MVD surgery in the Southern California area. We live in the High Desert. Any recommendations or suggestions will be gratefully received!
Laurin
Update: I posted this in the new member forum, and hope I'm adding it to this more specific forum correctly.
Laurin

Hi, Laurin. I'm so sorry to hear about your son's TN. I, too, have a ten year old son and it would be extremely difficult to watch him endure this type of pain. I'm sure your heart is aching. :( My heart goes out to you and I hope you are able to find some relief for him.

*edit*

I wish you, your son and family all the best and hope that all goes well.

Karate Mom

Hi Karate Mom,
I live in the 'really high' desert - Oak Hills/Hesperia. We live at the top of the pass just off the 15 fwy. We are with Kaiser, and just had an appt. today with GP's neurologist. He gave us a referral to Dr. Mastrodimos in the San Diego Kaiser. We want to ultimately be with a doctor at UCI that has been recommended twice to us, but Kaiser does not refer outside at this step. It may happen later. Thank you for responding! It has been wrenching to watch GP go through this and not be able to 'fix it' for him. He is on Tegretol and it is helped us to manage the major pain, but he is at a 7/10 every day, with stabbing pains, and a few episodes a day beyond that. He does not go outside unless we go to the doctor.

Thanks again for writing. I wish no pain for you as well!!
Laurin

Linskey?
 

Hi, Laurin,

Was the UCI doctor that was recommended Mark Linskey? He's probably the best in that area and that alone should be enough to let you go outside your insurance - it's in their best interest to have the best and not have someone less experienced do less than the best job and ... well, I won't spell out the repercussions here and now, but the insurance company sure doesn't want that. They should pay for second opinions and you may be able to get Dr. Linskey's office to help you work it out with insurance. There's a member of this forum who went to him from Colorado and had a very successful MVD. I'll drop her a line and maybe she'll come on and give you some tips. Assuming it's Linskey you're talking about. You don't want just any neurosurgeon doing an MVD - the nerve root is deep inside the brain, it takes a lot of experience to get a good success rate, and it's a rare disorder so there just aren't that many out there with that kind of experience.

He's on the TNA-FPA Medical Advisory Board -

http://www.fpa-support.org/providers..._page.php?i=34

and that gives a link to his UCI info -

http://faculty.uci.edu/profile.cfm?f...%20E%20Linskey

which has contact numbers and email.

There's also Dr. John Alksne at UC San Diego -

http://www.fpa-support.org/providers..._page.php?i=39

http://neurosurgery.ucsd.edu/john-alksne-md/

who is also on the TNA-FPA Medical Advisory Board. I don't think I know anyone personally who has had an MVD with him, but I've heard good things about him at the TNA-FPA functions and met him.

Have you been in touch with TNA - The Facial Pain Association?

http://www.fpa-support.org/

They may be able to help you with this, too. Do you have the book Striking Back? It's the manual for dealing with this and will help you in your search. Research, research, research!

Best to you and your son. Let me know if there's any way I can help.

Jean

Linskey, Yes.
 

Hi Jean,
I wrote a response yesterday, but must have done something wrong because I don't see it here!

Yes, the doctor is Dr. Linskey. We have a friend who had a surgery with Dr. Alksne a couple of years ago. She emailed him for us, but due to insurance rules, he is not allowed to perform surgery on anyone under 18. Dr. Alksne recommended Dr. Linskey who has recently performed a successful surgery on a 6 year old girl!

Thank you for your input and advice! We are going to attempt to contact Dr. Linskey this week.

I am so thankful for your post...it is such a lifeline!
Laurin

Laurin,

I'm the forum member that Jean referred to in her post. Dr. Linskey did my MVD a little over three years ago, and so far (knock on wood) everything has gone perfectly. In my opinion, Dr. Linskey is the best there is surgically, and he's also a wonderful, caring person. I had lots of people wonder why I didn't have my surgery done locally, and my response is always "if someone is going to cut into my head, I'm only going to have the best do it!"

Please feel free to contact me if you have questions or concerns, or if you just want to talk with someone who's been there/done that. I know how hard it was for me to go through this - I can't even imagine how hard it is to see your son in that much pain.

Susan

Susan!
Thank you for writing! I wrote an email to Dr. Linskey yesterday morning, but haven't heard back yet...I know it's too soon to hope for a response. We also have to go through our HMO (Kaiser) in order to have hope of a referral. I am so glad to know that you are still out of pain after three years! That is very encouraging! I will let you know if we hear from him!
Laurin

Hi Laurin,
Just to wish you and your family well hun. I will burn a candle for you to bring good luck and painfree wishes. Take care love and best wishes from England. Jackie xxx :grouphug::grouphug:

Jackie,
Thank you for your wishes! All the way from England! We are in the high desert in California...I am so thankful for the internet and this forum! I wish you many pain free days too!
Laurin

Hi Laurin,
My heart goes out to you as the mother of a child with this condition. I am with Kaiser in northern CA. I had an MVD done within their system. You can petition Kaiser to allow you to seek an outside specialist. I do not know how to do so, I just have heard from nurses that it is a possibility, if Kaiser cannot provide the adequate level of expertise. Having family who worked for them, I know that they outsource entire specialties in some circumstances. It depends.
If you have any questions in regard to MVDs, let me know if I can help. I am on sporadically, so it may be a while before I post back, but I will try to remember to check in in the coming weeks.
Again, :hug:, but you are not alone as long as you have us.
Lily