This lady had 12 brain surgeries, then a deep brain stimulator helped her!

There are 2 videos of her. I have edited the discussion to include a video of her that Cleo found.

Frst, about her TN and surgeries and resulting damage to her face.

https://www.youtube.com/watch?v=zyd1YNDXgtg

This is her poem about TN, the good and the bad, with the courage to show the damage that one of her 12 brain surgeries did to her face. She just mentions the deep brain stimulator in one line, but that was enough if it can give hope to those many who may feel there are no more options.

https://www.youtube.com/watch?v=m13iJC3RVI8

I thought her name looked familiar, then I remembered she wrote a book about TN:
http://www.amazon.com/Pained-Life-Chronic-Pain-Journey/dp/141340609...

Have any one of you had deep brain stimulators for TN? Do you know anyone who has had it done...

I've heard of them for multiple other health problems, but not TN.

Hi Sheila,
Carol had 12 surgeries, not 12 mvds. Her story is a tragic one, I’m glad to hear she is experiencing relief at long last.
She is the author of “The Pained Life” and has a website/blog
thanks for sharing.

(( hugs )) Mimi
ps. hope you are well ?!

I was going to say, 12 mvds sounds like malpractice!

Thanks Cleo!!

Hey I thought her name looked familiar! I thought she wrote a book about TN, and in that second video she confirmed that! Here's her book

http://www.amazon.com/Pained-Life-Chronic-Pain-Journey/dp/1413406092/ref=sr_1_3?ie=UTF8&qid=1379128298&sr=8-3&keywords=Carol+Levy

Oh I will edit the title, She said 12 brain surgeries, so I thought MVDs. Thanks for that. Yeah my TN has been much better since my hypothyroid improved. Strange, right? My mother's and grandmother's TN also got worse when their thyroid was low, and got better when their thyroid improved. Thanks for asking.

Take care!

Mimi said:

Hi Sheila,
Carol had 12 surgeries, not 12 mvds. Her story is a tragic one, I'm glad to hear she is experiencing relief at long last.
She is the author of "The Pained Life" and has a website/blog
thanks for sharing.

(( hugs )) Mimi
ps. hope you are well ?!

I am having DBS surgery October 30th. Commenting to follow your post :)

Oh gosh Jessica! I wish you the best and will pray for you.Since you've had it done twice before, I think you are VERY brave to do it again!! hope all goes well this time!! How wonderful that they found that the case of your facial pain is a tumor. That's rare!

Thanks Shelia, this will be my first time doing DBS. The other two surgeries on my trigeminal nervier was balloon compression. With my craniotomies, shunts, trigeminal issues this will be my 11th cranial surgery.

My tumor was found first due to a car accident in 2010. Just recently they connected the two

OIC. Sorry for my brain fog. Oh how I hope it helps. Let us know when you're well enough. This is new to all of us and we are hopeful to see your results.

blessings!

Sheila

I will keep you posted as I personally have had a hard time connecting with others who have had this done. I actually was able to talk to one of my NS patients and he had amazing results. So if my experience can help anyone that would be great.

Talk to you soon
"Never lose hope"
Jessica

That one is interesting too. Not deep brain though, but another option. She says "Placement of a retrograde neurostimulator. Connected to my spinal cord and wired around neck and shoulder on right side."

Hi Jessica My TN(2) started just days after I was in a car accident I have my first hospital appointment on Wednesday this week at Neuro....I'm on Meds Gaberpetine sorry brain is so fuzzy I'm not even sure what I'm asking you.......Maybe I'm asking is can an accident cause TN? Kind regards Jules Think I will ask this question in a new thread..I'm new to all this forum stuff.

Jessica said:

Thanks Shelia, this will be my first time doing DBS. The other two surgeries on my trigeminal nervier was balloon compression. With my craniotomies, shunts, trigeminal issues this will be my 11th cranial surgery.

My tumor was found first due to a car accident in 2010. Just recently they connected the two

Jules, my car accident was when I was diagnosed with a brain tumor. I had been having TN pains off and on for a year prior to the accident so the accident is irrelevant to my TN.

However I have heard that TN can be brought on by trauma. Not sure how involved your car accident was and where your injuries were but if you had any facial injuries or maybe even whiplash I would think it would be worth it to discuss it with your physician. Good luck to you




Dancing Queen said:

Hi Jessica My TN(2) started just days after I was in a car accident I have my first hospital appointment on Wednesday this week at Neuro…I’m on Meds Gaberpetine sorry brain is so fuzzy I’m not even sure what I’m asking you…Maybe I’m asking is can an accident cause TN? Kind regards Jules

Jessica said:

Thanks Shelia, this will be my first time doing DBS. The other two surgeries on my trigeminal nervier was balloon compression. With my craniotomies, shunts, trigeminal issues this will be my 11th cranial surgery.

My tumor was found first due to a car accident in 2010. Just recently they connected the two


thanks Jessica and sorry that I miss understood what you were saying sorry to hear you have a tumor and hope all goes well with your treatment. Hugs Jules
Jessica said:

Jules, my car accident was when I was diagnosed with a brain tumor. I had been having TN pains off and on for a year prior to the accident so the accident is irrelevant to my TN.

However I have heard that TN can be brought on by trauma. Not sure how involved your car accident was and where your injuries were but if you had any facial injuries or maybe even whiplash I would think it would be worth it to discuss it with your physician. Good luck to you


Dancing Queen said:

Hi Jessica My TN(2) started just days after I was in a car accident I have my first hospital appointment on Wednesday this week at Neuro....I'm on Meds Gaberpetine sorry brain is so fuzzy I'm not even sure what I'm asking you.......Maybe I'm asking is can an accident cause TN? Kind regards Jules

Jessica said:

Thanks Shelia, this will be my first time doing DBS. The other two surgeries on my trigeminal nervier was balloon compression. With my craniotomies, shunts, trigeminal issues this will be my 11th cranial surgery.

My tumor was found first due to a car accident in 2010. Just recently they connected the two