Shar’s Journey with Glossopharyngeal Neuralgia and Trigeminal Neuralgia

02/12/2025

I’m three weeks post op today.  I still don’t have any head pressure from fluid on the brain. I’m so thankful! However, I started having migraines again. I spoke with my neurologist who suggested I be admitted for 5 days of DHE infusions. I was admitted today and am about to start my infusion soon. The migraines could be caused from my head adjusting to lower pressure then what it was or it could be just migraines. Either way, the DHE infusion should help me. I’m not looking forward to a five day hospital stay but it’ll be worth it if my headaches are gone.

01/31/2025

I’m 10 days post op. My head is doing great besides normal pain from surgery. I went to the walk in clinic today for abdominal pain. At first I felt like it could be a bladder infection but my initial urinalysis showed nothing. They’re sending it to the lab for more testing. They are sending me next week for an abdominal CT scan to check the tubing. (I have two abdominal incisions because I have a tube from my brain to my abdomen where it drains). Unfortunately they said with insurance I have to wait 3 days for the CT scan. I just messaged my neurosurgeon who I see on Monday to see if they have any ideas whats causing the pain and perhaps they can get a CT scan sooner.

I’m just so thankful my head is still doing good 😊

01/26/2025

Day 5 Post Op
I’m doing good. I’m sore but managing. Most of my pain is from the tubing from the shunt. I have 30+ stitches in my head and a couple of small incisions in my abdomen.
It feels unreal that I don’t have head pressure. Its a miracle ❤️
Thank you for your love and support!

01/23/2025

I’m going home today!!
Doctor said I look remarkable for just having brain surgery. I’m waiting for x-ray to come by so they make sure my tubing and my shunt are in the right position.
I’m sore but I’m so happy that I don’t have head pressure anymore. It’s a miracle. ❤️ Surgery incision in comments

01/22/2025

My VP shunt brain surgery went well. I woke up without any pressure in my head. That’s really good news. I’m having a lot of head pain and neck, pain and abdominal pain because they had to run the tubing down my neck and into my abdomen. I have two abdominal incisions as well. I’m really thankful for the neurosurgeon because he was able to reduce the pressure after four years of struggling. Now, if I could just get the pain under control, I’ll be able to go home. Thank you for all your love and support and prayers ❤️❤️❤️

01/20/2025

Heading to the train station to be admitted for pre op CT scan and other testing. Surgery is tomorrow at 7:30 am. I’m my neurosurgeon’s first patient in the morning.
I can’t wait to finally get the fluid on my brain fixed. Its been a long 4 years with head pressure and pain.

01/11/2025

01/06/2025

The count down has begun. My 4th brain surgery for a VP shunt is in 15 days. Today I had a spinal tap to bring down my head pressure and I slept most of the day. I had an EKG done today and will get labs tomorrow. Its getting close. I can’t wait to feel better!

12/20/2024

I don’t know the date yet, but it’s been confirmed. I am having my fourth brain surgery at Jackson Memorial in Miami next year most likely January. I’m having a shots put in because the stent isn’t draining enough fluid from my head. My head is making too much fluid so a shunt is necessary. I will keep everyone posted when I have a date for my surgery.

12/14/2024

On Monday I find out if I’m having my fourth brain surgery. My stent that was placed in my brain in February hasn’t been draining enough fluid from my brain and I’m still having high pressure. A cerebral shunt may be needed to drain the fluid off my brain. Daily pressure and migraines has been such a struggle for me. I don’t even know how I make it through the day some days. I see my brain surgeon Monday afternoon. I really want a shunt. I think its the only way to control the pressure in my head. After a long 4 years of fluid on my brain, I really need this all to get under control so I can lead a normal life. I’ll keep you posted. Thank you all for your prayers and support!

09/07/2024

I’m 6 months and 8 days post op from having a stent placed in my brain. I’ve been getting increased head pressure, pain in my ears, burning sensation at the top of my head, and neck pain and a ton of pressure. I ended up in the ER at the University of Miami. They gave me medication’s to get me through till next weeks angiogram. I’m so glad I got to go home this morning. They said it’s possible that my stent may be a little occluded (slightly out of position), but it’s nothing serious at the moment. They said if it was seriously occluded, I wouldn’t be sitting there talking to them. They said take it easy and do my best to make it to my angiogram on Thursday because that’s where they will get a full picture of what’s going on