After 11 months, here is my update

Hello guys, it has taken me quite some time to come back and post an update to my surgery last July. I have been lurking here and there, but I just needed to get away for a while. Coming here to read the forums is somewhat of a dichotomy...on one hand, it offers support, but on the other, it depresses me, seeing how others suffer.

When I saw the post by Earmom, and her son's pain, I just about broke down. I am an adult, and I have managed my pain up until now, but for a child to have that level of pain, well, it both angers and saddens me. Leave the kids alone pain!!

So here is the update to my Surgery last July:

In my surgery, the neurosurgeon opted to cut my glossopharangeal nerve. Unfortunately, the pain in my throat never went away, that is why it has taken me so long to post this follow up. Right after my surgery, I went through a period of depression on top of my normal depression. After lying in bed for about a solid week, I pulled myself back up and resumed my life...this is what we do.

I was blessed with a perfectly healthy baby girl in September.

I have began taking Lyrica in addition to the other medications I was already on, and it seems to help some. All in all, I am doing the best I have been since my symptoms started over 6 years ago. I really do attribute the Lyrica for helping, although I simply hate taking more medication.

I had been told by my neurosurgeon that cutting the nerve would completely take away my glossopharangeal neuralgia, but the surgeon did not gut the first 3 branches of the vagus nerve, which is sometimes needed to eliminate the pain.

I am a teacher, so I have off in the summer. I use that time off to aggressively pursue medical intervention, but the medical bills have piled up, as many of you most certainly relate, so this summer, I do not foresee much in the way of medical pursuits. That being said, I will not stop until I get some semblance of my life back!

I am intrigued by the information posted in the **NEW** ES Survey Results posted by Ang:

"Yes. Styloidectomey, stylohyoid reduction, hyoid reconstruction, calcification removal from skull base down to clavicle. I would recommend this to others!"

I need to look into this more.

All in all, I feel good about eliminating one possibility by having my surgery. As many of you have mentioned here, we must be heard, and we should guide our doctors. We know our bodies best. We carry the burden of dealing with the pain each and every day.

Earmom, you son will be in my prayers, as all of you will be.

God bless you all!

I am glad to be back.

ps, here is a proud Daddy's picture of his little sweethearts:

What a lovely picture, and congratulations on the birth of your daughter, Callo! I am sorry you are still struggling with pain, and hope that your diligence will eventually lead you to a solution. Thank you so much for the update. All the best to you and your beautiful family.

Callo1 - I just read your most recent post and your picture of your children is touching. They are beautiful and there is so much beauty in the world. You will find yours again. I will not stop until my son is free from pain. Thank you for coming back to tell us how you are doing and for your personal prayers for my son. We pray together almost every night for his healing and the healing of other suffers too. My son has lost almost 5 years of his childhood and has been out of school for over 2 years now, but I told him I will never give up on him. Every day is a gift and we will find the right procedure to end his suffering. I work so hard to stay positive for him, myself and husband and other child. I don't know your whole story or what you have tried to date, but NEVER give up. Your children will look up to you as their strong, loving and determined mommy. And someday you WILL look back on this and know that you conquered it. You will also know that you can conquer anything that comes up with your children. We are either going to do microvascular decompression surgery (MVD) on the glossopharyngeal nerve (brain surgery) or a styloidectomy if we can find a doctor who will agree with Eagles and to do the surgery. Did they cut the nerve in your throat or in your brain? Did you try MVD first? How long are your styloid processes? Are you unilateral or bi-lateral? Since my son is bi-lateral, eagles makes a lot more sense than needing MVD surgery on both sides of his brain, but we will do anything we need to. I will keep posting as I learn more and as we move forward. I am glad I decided to click on your update today. xoxoxo