Quantcast

Living With Facial Pain

Pns for type 2

Hello all. I finally saw a neurosurgeon for my type two that I’ve been suffering with for nine months. I was hoping that he would say yes your saved were doing a rhizotomy or gamma knife or something but nope he said no surgical options were a good idea for type two that it could make things worse. He did though say I may be a good candidate for a pns system. I’m in fl. He said he has colleagues right before he left Ohio who do the procedure that he’s going to get in contact with. He said Ohio was the only place he knew of doing it. Can anybody with type two that has had this done pleaseeeee share their stories and give feedback. Thank you. I also don’t understand shouldn’t a neurosurgeon be able to do a nerve block or something even if its just temporary relief?

Nobody with atypical has any insight on this?

From my experience, I would not ever do the Gamma Knife. It messes with further treatment. I did do Gamma because it was non invasive. Then Had an MVD, That worked fine but I was left with Anesthesia Dolorosa. I will always believe the gamma knife set me up for problems. Everyone has their own opinion though.

I have no experience with it, Jennifer, but, I, too, have wondered about nerve blocks or botox or pns. Have you meet with a pain specialist? I feel like they are the ones best qualified to do that kind of stuff. I feel like neurosurgeons do surgical treatments (gamma knife, etc.). I'm seeking someone who can help me, too. My T2 seems to have morphed into GN and GPN, too. This is such a complete bummer.

Beth yes I finally found a pain management Dr who is willing to help. The last place just wanted to throw meds at me. He did a nerve block today and I have a follow up in two weeks …he said I may need a series of them. He may if all else fails try burning the nerve with radio frequency. He said a neurosurgeon is likely to not perform procedures if none of these help. I previously met with a neurosurgeon who wouldn’t do a single thing. Its all so complicated. I just called the office though and told them I wasn’t numb and they said that’s ok that everyone is different. Its all just one big waiting game. Already invested almost a year of my life into this. What are your symptoms??

I’m atn …I don’t get flares or attacks. My pain in constant 24/7 unless I’m asleep …inside my mouth my teeth my gums etc…nothing on the outside of face

I have T2, but I also think I have geniculate neuralgia and glossopharangeal neuralgia. My pain can go from the top of my scalp to my nose and facial skin. From my inner ear to my tonsil to the soft tissue under and in front of my ear. From my cheek bone to my jaw bone to my upper lip.

It just gets worse and worse. Today I’m down.

Jennifer, I have experience with a PNS. In fact I am getting a permanent implant of one on March 7. I can answer some questions for you, but it might be easier if you call me. (801)■■■■■■■■. Lora

Lora are you type one or two?


Type two, or atypical. Constant, burning pain.


Jennifer Muir said:

Lora are you type one or two?

Lola on your face or inside mouth/ teeth?

My pain is on the T-Zone of my face: forehead and down my nose. Pain and pressure on the upper ridge of my cheekbones too. Exclusively in the V1 region.

Jennifer Muir said:

Lola on your face or inside mouth/ teeth?

Flute Cutey - How did your permanent implant go??? I hope you have relief! How is/was the recovery? I am having the implant placed on May 24th - seems so far away. I'm planning for recovery now - needing to have family come to town to help (I have 2 little boys, ages 2 and 4) and will be taking time off work. Any info you can give?

flute cutey said:

Jennifer, I have experience with a PNS. In fact I am getting a permanent implant of one on March 7. I can answer some questions for you, but it might be easier if you call me. (801)■■■■■■■■. Lora

You are not going to want to hear what I have to say. So far, it hasn't helped. I am so discouraged. The surgery itself went really well, and the pain was extremely manageable. I am healing so fast. The stim was placed perfectly. So, after all of that good, it is not working to decrease the pain.

Right after the surgery, I was in terrible ATN pain. They had a hard time getting it under control in the recovery room. Once I got back to the hotel, things settled down, for five whole days. I was so excited that it was working so well, and then BAM, the pain is back as bad as ever. I can't figure out why I had this break. I got 50% improvement with the trial on most of the days, but I did have a really bad night. What worries me is that my body did the same thing in the trial as it did in the permanent. It went into shock for a few days and didn't recognize the nerve pain. If this is the case, I wish I had kept the trial for 10 days so that I could have seen this. I am just over three weeks out of surgery so I am sure that I am still healing internally. I keep praying that things will settle down enough to give the stim a chance to work.

I went back to Tennessee for my followup a week ago. They reprogrammed things, but I am still not having relief. I am praying so hard that you get the relief you are hoping for. Let me know how it goes. I would be happy to answer any specific questions too.


sloane said:

Flute Cutey - How did your permanent implant go??? I hope you have relief! How is/was the recovery? I am having the implant placed on May 24th - seems so far away. I'm planning for recovery now - needing to have family come to town to help (I have 2 little boys, ages 2 and 4) and will be taking time off work. Any info you can give?

flute cutey said:

Jennifer, I have experience with a PNS. In fact I am getting a permanent implant of one on March 7. I can answer some questions for you, but it might be easier if you call me. (801)■■■■■■■■. Lora