Hi I'm new

I’m Paula, I’m 28 (29 on Monday!) and I live in Scotland with my Husband and our 4 young kids.

On September 14th, I had quite a sizeable tumour removed from my parotid gland. It had grown into the para pharyngeal space in my neck and my surgeon had 2 methods of surgery to decide between. The one he chose made the removal very tricky.

I was fine for 4 days post-op and then I started experiencing severe, what I now know to be, GPN.

For 7 weeks, no doctor could tell me why I was so sore and no pain meds worked. 2 days ago my surgeon confessed that he thinks he may have damaged the GPN whilst forcing out the tumour.

He doesn’t understand why it’s still so sore and just kept hoping it would go away, until yesterday, when he said it’s now time to try to get me to a pain management specialistas it’s not likely to heal. If it was going to, it would have. Unfortunately Gabapentin is useless but not without dude effects.

He kept saying sorry over and over and said that it’s not a normal complication of the surgery. He now wishes he had taken the other approach.

My GPN is very severe. It’s what they call “secondary GPN” and my surgeon will not operate on that area again.

Basically, it’s a game of wait-n-see. I wake up each day hoping that the constant pain and attacks will stop. My face is always do press and bad attacks ages to recover from.

My Husband feels helpless and the kids are frightened. I’m so desperate. I should be celebrating the removal of my tumour and instead my life feels ruined.

So sorry to hear this, if it feels anything like mine did, I sympathise. I had problems swallowing with severe stabbing pains, and the triggered attacks which could last 10 minutes or more were horrible. My pain was due to tortuous PICA and Vertebral artery compression of the 9th and 10th cranial nerves in the brain. It was helped but not eliminated by Carbamazapine (tegretol). Your pain specialist should be able to get it under control. Bless you! Hang in there, do not give up. It might take some time, I know that isn't what we like to hear but you just can't jump into a full dose of these medications. They can use many different medications which mght help.

My pain is gone due to recent decompression neurosurgery (10 days postop now). Good luck in your search for relief.

Thanks. It is a living nightmare. My surgeon mentioned removing the styloid bone to get into my tumour and I am wondering if a styloidectomy can cause gpn? I have tried to find the risks of styloidectomy but these are hard to find.