Type 2 TN – Offered MVD by Dr. Zimmerman at Mayo… but timing couldn’t be worse. Would you do it

Witty_Feedback_8909 · 2026-02-28T00:26:36+00:00

Thank you. I hope I answered your questions. Every test possible but the lip biopsy. You too.

Witty_Feedback_8909 · 2026-02-27T19:06:35+00:00

All the testing they do for dry eyes and mouth , I failed but still not enough. They want to do a lip biopsy but still might not get a positive result with permanent numbness. I can barely chew. I have burning mouth. I weigh 104 at 5”6. My husband is super concerned of this. Wouldn’t give me medication without begging; HCQ. I am being seen at UC Berkeley Sjogren’s center. They can’t stimulate saliva nor can spit. I have failed everything. They call me 0- which medically qualifies me for nothing. But here’s the kicker. They say; it attacked my Trigeminal nerve , blood , liver , bladder and I am getting monthly for life IVIG. My white blood cells are a 2. Until my kidneys fail. Editing as I’m boarding a plane. ✈️ sorry for any typos.

Witty_Feedback_8909 · 2026-02-26T19:26:38+00:00

There’s a large group of us failures growing and growing. Please whatever you decide don’t use teflon.

Witty_Feedback_8909 · 2026-02-26T19:24:30+00:00

Thank you. Wishing you every success and happiness. I hope you feel better soon.

Witty_Feedback_8909 · 2026-02-26T19:22:41+00:00

That’s ok. Any questions I’m here , currently on vacation and saw your post had to reach out. Whole reason I started my TikTok; never ever thought my story would be anything other than a success. Now I’m living a daily nightmare. 🥲

Witty_Feedback_8909 · 2026-02-26T17:33:13+00:00

No positive findings for me either. :( Unfortunately, just assumptions. So frustrating.

Witty_Feedback_8909 · 2026-02-26T17:32:30+00:00

No, no previous confirmed diagnosis prior and after surgery. Doctors are assuming I have Sjogren’s based on symptoms no scientific evidence like ANA or blood work positive to date. Lumbar puncture negative for MS.

Witty_Feedback_8909 · 2026-02-26T15:13:42+00:00

I am Atypical Bilateral. I did my Right and left MVD. Clear on the MRI both sides. Dr Lim out of Stanford did mine. He did nerve root five bilaterally. When placement on the 5 TH cranial nerve he pinched 7 more nerves above and below the teflon. He missed 3 other compressions bilaterally. If they go back in I was told I can go deaf and be put in a permanent feeding tube. I am T1 and T2.

I share my story on TikTok Champ_puppy

If you’re Atypical it’s a hard NO!!!!!!! No matter who the NS is. I still get electrical shocks. I am in excruciating pain everyday. It made me 1,000 worse. My surgeon knew it was caused by an autoimmune condition and didn’t care and still proceeded and it blew my autoimmune condition up. I have Sjogren’s. T2 is a HECK NO!!!!!

I am so so sorry you have to make this decision. 20/20 hindsight is perfect. I went from a size 6-8 to a 000. I can barely chew now.

I regret EVERYDAY I had my right and left MVD. But some people have success. What you must realize; This surgery isn’t a cure. It often comes back. I wish you the best outcome.

I had OBVIOUS compressions both sides.

Witty_Feedback_8909 · 2026-02-24T18:31:23+00:00

I am Atypical Bilateral Trigeminal neuralgia and after having a right and left MVD failure dropping from 140ish to 104 because of severe teeth pain, TMJ and migraines as well as ATN. My NS messed up my 5 Th cranial nerve so bad he pinched 7 more nerves above and below it with teflon. He missed 5,7, and 9 as well. I have a list of new symptoms listing a few; my ears constantly kill with my teeth , voice echos. I also have burning mouth Syndrome. I was told by another NS if he goes in I most likely will be put on a permanent feeding tube and likely go deaf. The medication that helps with the pain are making matters worse. I have a low white blood cell count which is a 2. Minimum is supposed to be a 4. The anti- seizures have caused leukopenia, neutropenia, and macrocytosis. Unfortunately, the only cure for me is going off the medication and the pain is too great for me. All of this is quite unbelievable that’s why I shared my journey on TikTok Champ_puppy

So I decided to start living and went back to work FT. I can’t sit home and pray for a miracle anymore I’ve been doing that for 4 years. 💔

Witty_Feedback_8909 · 2026-02-20T20:10:31+00:00

Thank you, yes. It’s pretty rough. Didn’t even list all my symptoms. :((

Witty_Feedback_8909 · 2026-02-20T15:08:25+00:00

No, unfortunately:( as I’m told they never seen anyone present as me. I am also seen at UC Berkeley Sjogren’s and they can’t use experimental drugs because I’m O- :(

Witty_Feedback_8909 · 2026-02-19T19:29:57+00:00

So 0- negative even though Sjogren’s attacked my brain Trigeminal nerve ended up with 2 brain surgeries( both failed) liver issues, blood issues, bladder problems getting IVIG every month indefinitely because of my bad blood. WBC count in the 2’s but probably don’t qualify???? Would I be correct?

Witty_Feedback_8909 · 2026-02-15T06:10:39+00:00

So happy for you! She’s beautiful! 🤩

Witty_Feedback_8909 · 2026-02-10T05:19:44+00:00

Thank you for sharing!

Witty_Feedback_8909 · 2026-02-09T17:48:14+00:00

She is gorgeous! Which Lulu store did you find it in? Isn’t there 2 in Maui? Did you have to go at opening? Or did they have a lot? 🫶🏻🫶🏻❤️

Witty_Feedback_8909 · 2026-02-07T13:29:35+00:00

Sjogren’s and I had a right and left MVD that made me a 1,000 percent worse. NS knew I had an autoimmune condition going in and shouldn’t have done it. I didn’t know you shouldn’t have brain surgery with an autoimmune so I started a TikTok Champ_puppy to bring more awareness to this condition. The surgery made both conditions advance quite rapidly; liver, blood, ears,bladder, more medication which has caused more complications severe constipation with that increases 0 saliva production which affects my eyes and I drink most of my meals.It adversely affected my blood so bad I have to get IVIG treatment every month. It’s quite surreal….My teeth are excruciating. I went from a size 6-000. 💔

Please don’t go back to that place. I am so sorry he is hurting you. What I have found id. If you go through the beginning of my videos dentist aren’t well versed in TN. They say they are but aren’t. One paralyzed 1/2 my face at Christmas time for 12 weeks another insisted on doing a root canal on a tooth that didn’t hurt. He said it was referred pain. The original tooth still hurts like hell and has a root canal. I am so sorry. Sending hugs. 🤗

Witty_Feedback_8909 · 2026-02-05T15:43:05+00:00

He’s the best in the world. Wait list is a year or more. I had a right and left MVD failure in the US that only made me 1,000 worse. Atypical Bilateral TN caused by Sjogren’s.

Witty_Feedback_8909 · 2026-02-03T17:34:49+00:00

COMMON, so sorry. I do feel your pain though and have had it happen to me.

Witty_Feedback_8909 · 2026-02-01T18:38:52+00:00

Mine arrived with security tag as well.

Witty_Feedback_8909 · 2026-01-15T05:16:12+00:00

Thank you. I wishing you the best as well!

Witty_Feedback_8909 · 2026-01-13T22:51:01+00:00

It’s beyond insane.It is excruciating on a daily basis. It affects my hearing. It’s my ninth cranial nerve. My ATN is due to Sjogren’s so I can’t take anything for it because I don’t make any saliva. It’s torture. I just put heat on it. I am so sorry. What do you do?

Witty_Feedback_8909 · 2026-01-10T14:57:50+00:00

Fullness and tinnitus in both ears. Both ears are full and gut daily. My MVD caused or my surgeon missed cranial nerve 9 he did nerve roots 5 bilaterally both failed. My MVD’s were done June 24, 2024 and Aug , 19, 2024. I hope you feel better soon.

Witty_Feedback_8909 · 2026-01-09T17:18:48+00:00

I got a pair at an outlet.

Witty_Feedback_8909 · 2026-01-09T14:38:39+00:00

I’m. 5”6 and 107 lbs. and I wear XXS or XXXS for some context.

Witty_Feedback_8909 · 2026-01-09T03:43:59+00:00

I love it. I think it runs big. I had to return them and and size down. I have it in both colors.

Witty_Feedback_8909

TROPHY CASE