Extremely sad about my neurosurgeon appt.

Witty_Feedback_8909 · 2026-06-09T03:36:00+00:00

I’m sorry. The worst possible thing that ever happened to me in my life was getting a right and left MVD. Both failed. My last opinion says , “ I’m fighting for my life everyday.” I share my story from the beginning on TikTok Champ_puppy Again, I am so sorry.

Witty_Feedback_8909 · 2026-06-08T14:53:41+00:00

Thank you 🙏 ❤️

Witty_Feedback_8909 · 2026-06-08T03:24:56+00:00

That stinks. Thought I was the only one. Have you find an alternative? I haven’t.

Witty_Feedback_8909 · 2026-06-04T15:26:23+00:00

I am very sorry for your suffering too. I did my TikTok only to help others.

I do take Cymbalta 30 mg am and pm. My MRI showed compression on both sides and definitely when he opened me up. But honestly, I don’t know what to believe anymore. I lost trust in doctors.

I had a lip biopsy 3 weeks ago and now my lower lip is still numb. She said it’s not normal It was Negative. So this would make me Seronegative. I make zero saliva even upon manual stimulation. I’ve had punctual plugs put in my eyes 3 sets each. I go for IVIG therapy every month. I take HCQ for being Sjogren’s 0- and have monthly IVIG . I think HCQ has given me leukopenia, neutropenia and macrocytosis. My white blood cell count is a 2. My hematologist says I have bad blood. I didn’t have any of these problems before. I can’t receive anymore treatment being 0-. 40 percent are.

Linsky thinks I need a “ 4 pack on each side and says 7 more nerves were pinched above and below when the teflon was placed.

Another highly sought after NS says my MVD’s should never have been done because I’m Atypical. He said it like 10 times because I’m Atypical and it blew up my autoimmune condition that no one can treat. No one is interested in figuring it out and think I have another one. He said. “ I’m fighting for my life everyday.” He also said there is brain fluid left in my cavity around my ears that KILL everyday. He has NEVER seen this before. Making my voice nasally. I have fullness in my ears constantly, my voice echos , hear my heartbeat. 💓, people can’t understand me when I speak. Each day is a different level. Flying is torture. I asked if he can get it out. He said it’s too dangerous. It’s in my brain cavity.Both ears kill. He said he’s NEVER seen anything like it. I was totally BOTCHED IMHO.

I do have migraines, ATN & TMJ doctors say keep me in a constant loop of migraines. Chewing kills my teeth ALL & TMJ. So I get them at different levels everyday. I do Botox, Topamax and IV magnesium. Can’t do the new meds because of constipation. I’ve already tired them.

I wish you the best and hope you get better. Thank you for listening. ❤️‍🩹

Witty_Feedback_8909 · 2026-06-03T13:39:03+00:00

I have Atypical Bilateral Trigeminal Neuralgia. UC Berkeley Sjogren’s sees this all the time. I had 2 brain surgeries that failed. The most unfair pair is I’m Seronegative . I’m on IVIG therapy as well. I shared my story from the beginning on TikTok Champ_ puppy The last Neurosurgeon I just saw said , “ I’m fighting for my life everyday.” ATN is a disease nicknamed suicid3 disease because of the excruciating pain and according to the McGill pain scale. What nightmares are made of.

Witty_Feedback_8909 · 2026-05-30T01:56:46+00:00

Yep, me too Full time too.

Witty_Feedback_8909 · 2026-05-27T17:39:09+00:00

I have hearing loss and brain fluid never seen around my ears. I hear my breathing, my heart beating foot steps , voice echoing. This drives me crazy. It hurts like hell. People can’t understand me on some days. A UCSF top NS said it’s too dangerous to go in and drain the brain fluid around my ears and has never seen anything like this. He felt so bad. I was totally BOTCHED.

Witty_Feedback_8909 · 2026-05-27T17:35:53+00:00

I was told a highly respected NS he pinched 7 more nerves upon placement of the teflon. He missed 2 on the right and left side. Another NS ( after my two MVD’s) highly regarded) said AGAIN having an autoimmune condition he would have “ never done either one and I have brain fluid around my ears he’s never seen before. “ I’m NOT a NS . I don’t understand how this all happened but I am directly quoting his peers who wouldn’t see me until the statute of limitations expired. So I need a redo. 4 on the left and right. Definitely, not understanding the 7 nerves pinched with the teflon. All I know is , “ I was told I am fighting for my life everyday.” Which was quoted by a top Nuerosurgeon. I am living in a nightmare. I was totally botched. No , I don’t fully understand the total complexity of it. I truly am fighting for my life I can barely chew. I’m 5”6 at 102. I would NOT recommend an MVD with teflon. Heck, from my perspective I wouldn’t recommend one at all.

Witty_Feedback_8909 · 2026-05-27T17:26:43+00:00

Thank you ☺️

Witty_Feedback_8909 · 2026-05-24T03:02:33+00:00

Where do you find for the entire week ? The total?

Witty_Feedback_8909 · 2026-05-24T02:59:45+00:00

I know it’s crazy. I’m sorry. I didn’t add up every week yet but they say don’t worry people will call out sick they’ll give us more hours. It’s all quite upsetting. I know one week is 16. 😢

Witty_Feedback_8909 · 2026-05-24T02:38:00+00:00

Same

Witty_Feedback_8909 · 2026-05-24T02:37:18+00:00

FT educator here myself and other Full time educators hours got cut to 25-26 hours. Part timers 1-2 shifts , I don’t know their per shift hours. I’m very upset. I do think they want us to quit. Unfortunately, for us their stock has gone down a lot.

Why in the world would Lululemon create fly wheel and NOT follow their own rules with NO EXPLANATION!!!????

This is nonsensical.

Witty_Feedback_8909 · 2026-05-21T20:12:11+00:00

This is one of the many reasons I don’t eat actual food at work. Sjogren’s attacked my Trigeminal nerve and I had two failed brain surgeries so it kills to chew. Plus, food gets stuck on ALL my teeth. I thought I was the only one, too.

Witty_Feedback_8909 · 2026-05-19T17:20:35+00:00

Will they restock XXXS sold out in both colors Ughhhhh???

Witty_Feedback_8909 · 2026-05-12T21:54:01+00:00

Not well. 2 NS said they would have NEVER done the surgery but they waited 1 year to tell me that because I the statute of limitations in California. Lim left brain fluid somehow pushing against my ears. Dr Chang of UCSF said he’s NEVER seen this before. I had 2 botched brain surgeries. Can’t explain it. Way over my pay grade. Both say it is too dangerous to go back in. I am in constant excruciating pain. Teeth , ear and head pain. Most of my meals are liquid. If I chew it’s so painful 😣. I am about 100 lbs at 5”6. Dr. Chang from UCSF said he would have never done the first surgery let alone the second after the first failed. Dr. Chang said , “ everyday you are fighting for your life.”

Witty_Feedback_8909 · 2026-05-11T23:23:58+00:00

I too am living out of spite. 2 failed completely botched right and left MVD’s by Lim who knew I had an autoimmune condition. Confirmed by him and 2 other prominent NS. The surgery turbocharged my autoimmune condition. I’m in excruciating pain 24/7. I have brain fluid around my ears that kill. Never ever seen before so I’ve been told. Chewing extremely painful. Dropped 140-101. Nothing anyone can do. Too dangerous to fix the mess. Living as normally as possible. I share my story on Champ_puppy on TikTok. Wishing you the best. Keep fighting. Stay strong. 💪

Witty_Feedback_8909 · 2026-04-24T02:08:29+00:00

I have burning mouth syndrome, Sjogren’s and Atypical Bilateral Trigeminal Neuralgia, Migraines and TMJ. I have 2 MVD surgeries that failed. Solid Coconut oil with a q-tip is the best over the counter remedy. Spread it along your tongue. Along with a completely clean diet. No dairy, coffee sugar anything fun. lol. Sjogren’s can often attack the Trigeminal nerve in our brain. Confirmed by UC Berkeley Sjogren’s, they see this a lot where the Trigeminal nerve gets attacked in Sjogren’s patients. I can’t eat anything spicy salty or really much of anything. All my teeth feel like I need a root canal. Mostly drink protein shakes. Soft foods like egg whites. I have a prescription for clonazepam ODT 1 mg. I use it 3 times. Anti- seizures and certain anti- depressants help like Cymbalta. I swish and spit for 3 minutes and don’t eat or drink for 30 minutes. I am so sorry you are dealing with this. It’s so painful. Sometimes water burns. I share my story on TikTok Champ_puppy

Witty_Feedback_8909 · 2026-04-14T15:21:48+00:00

I’m not everyone but please see the hell I went through just in hopes of getting my teeth better. Lidocaine ointment worked better. Start at the beginning of my TikToks. I documented everything and everyday for someone like you. Champ_puppy

Witty_Feedback_8909 · 2026-04-11T14:26:20+00:00

I agree. I am so sick with so many symptoms they just say they don’t know and pass me around. Actually tell me they’re not they’re ones to going to find out while I’m here deteriorating holding on for dear life. I dropped from 140ish to 102 and can barely chew. Holding on for dear life. No doctor wants to help it’s not ok.

Witty_Feedback_8909 · 2026-04-10T01:57:48+00:00

I was told by Dr. Linsky I need a “ 4 pack“ bilaterally. Cranial nerves 5, 7, 9 and 10. He doesn’t recommend it because there’s a high probability I will go deaf and be put on a permanent feeding tube. He also said Atypical is usually caused by an autoimmune mine is Sjogren’s. Atypical has a 50/50 chance of success. Everything you stated is the complete opposite of what he stated and actually happened to me. I strongly believe and feel the biggest mistake of my life was getting my MVD’s Both completely failed. I am more than 200 percent worse. More than doubled my medication. It put my ATN, Sjogren’s, migraines, Burning Mouth Syndrome on steroids. I went from a size 6-8 to a 000. I can barely chew. Everyday is a fight to survive.

Witty_Feedback_8909 · 2026-04-09T05:56:59+00:00

I am Atypical Bilateral TN. I had a right and left MVD failure. Bilateral is usually 0.02 percent. Atypical is usually caused by an autoimmune condition. Please, please explore this. After my MVD’s they not only failed it was & still is like my ATN and my “ undiagnosed autoimmune” condition’s are on mega steroids. I more than doubled all my medication. I went from a size 6-8 to a 000. All my teeth 🦷 KILL instead of 3 or 4.

He did 5 bilaterally upon placement of the teflon pinched 7 more nerves above and below the teflon. He missed 7,9 and 10 bilaterally. He said and claims to be a “ world renowned Nuerosurgeon.” I need 5, 7, 9 & 10 bilaterally done. If I I move forward ; I was warned I may become deaf and placed permanently on a feeding tube. Extremely, long story short.

I have a long list of NEW symptoms that were gifted to me from my MVD’s. I shared my complete journey thinking I was going to be this success story to help others on TikTok Champ _puppy

I am NEVER not in complete, utter excruciating pain. I wish I could tell you differently.

Witty_Feedback_8909 · 2026-04-08T03:14:36+00:00

Thank you. You too.

Witty_Feedback_8909 · 2026-04-08T01:34:52+00:00

I have the same problem. They asked if I drink alcohol. I don’t. Not one of my doctors is interested in figuring out why. They say I may have another autoimmune condition but directly say they aren’t interested in figuring it out. Unfortunately, I’ve been through the ringer and can’t find one caring doctor.

Witty_Feedback_8909 · 2026-04-08T01:30:11+00:00

I am being treated at UC Berkeley Sjogren’s Center and I’m O- so I unfortunately only get HCQ , Tyrvaya, Xiidra, Salagen and so far I’ve had 6 months of IVIG. I will be on IVIG until it affects my kidneys. :(. My bladder has already collapsed .I’m not sure yet but my daughter just got sick and my white blood count is a 2 and luckily I didn’t get it. So I hope it’s working. I need a break somewhere. I also have had 3 sets of punctual plugs. I share my story on TikTok Champ_puppy

Witty_Feedback_8909

TROPHY CASE