Saturday, October 8, 2011

Trigeminal neuralgia: ABC news report


Has the ABC report of trigeminal nerualgia (TN) and microvascular decompression (MVD) surgery given you hope?

I'm encouraged not only by the fact that the debilitating condition has received recognition by a major network but also that people who suffer have had a moment of validation. Let's take that moment and internalize it, making it a part of who we are: strong, sane individuals who suffer and want to get well.

Several of my friends, none of them who have experienced facial pain, have contacted me about the ABC news episode. They wonder if I am aware of the procedure. When I was the Director of Patient Services for TNA, the Facial Pain Association, I discussed the surgery several times each day with individuals who were looking for relief.

No, I didn't have the surgery. One of the reasons I didn't was that I was afraid. Although the statistics show great results, not everyone's pain is relieved by the MVD. But don't lose heart; MVD surgery is not the only resource.

After I was properly diagnosed, I searched the Internet looking for help. I ran across message boards where people talked about their complications and expressed their remorse for having this procedure. I was paralyzed by fear, afraid to move forward with treatment. When the electrocution-type pains struck, I prayed to die. They were in all three divisions of my nerve: my right eye, my cheek, and my jaw.

What I didn't know was that people often post on their worst of days, never returning on the good days to say that they are better. When they pain is relieved, they often move on with their lives and prefer not to think about the trauma they have experienced. For the people reading the blogs and message boards, it looks as though there is there is no hope. But there is.

ABC News encourages people who have trigeminal neuralgia to make sure they have a physician who believes them. I cannot emphasize enough the importance of this. It's part of the validation process. Many individuals who have facial pain have been dismissed as having emotional problems. It's important to know that depression is secondary to trigeminal neuralgia. Another thing you want to consider is that the MVD attempts to treat the situation that causes the pain. Other procedures, often called less invasive, cause damage to the nerve.

Other important things to note is that some neurologists do not have experience in treating facial pain. Neurologists prescribe medicines and can refer you to a neurosurgeon if you are interested in a procedure. Not everyone is a candidate for an MVD, and not every surgery is successful. It's important to discuss this possibility with a neurosurgeon. One thing that may give you insight into what you can expect after the procedure is to ask what constitutes a successful surgery in the neurosurgeon's opinion. You may want to find out how many MVDs the physician has performed in the past year.

Most of all, it's important to do your homework. To learn about the many types of treatment, you can read an excellent book called Striking Back. It discusses the many types of facial pain and their treatment options.

If you are wondering why God allows people to suffer like this, you may be interested in With Great Mercy. It's a personal account of how TN affected every area of my life and how my faith pulled me through the dark times.

I've told hundreds of people, maybe thousands, that the world would be a better place if everyone experienced this excruciating pain for just one day. No one has asked why because we know. It gives us greater compassion and empathy for others. It makes us thankful for the blessings we once took for granted. We so desperately want those around us to understand why we cannot talk, brush our teeth, or experience the slightest breeze without being "electrocuted." But maybe - just maybe - reports like Diane Sawyer's will help others relate to us.

ABC: thank you!

Have you visited my website?

9 comments:

  1. I wish I would have seen that report! My doctor has discussed gamma knife surgery with me but I am reluctant to do it. They fry the nerves in this surgery and a very low percent of people experience a whole new type of pain afterwards and yes, they post about it making me afraid. They won't do MVD on me. I have only 2 weeks now, after waiting 4 months, until my appointment with the Mayo Clinic. I am both excited that they will "fix" me and afraid they can't. Wish me luck :)

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    1. How did it go? Hope it went well. God bless.

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  2. Thinking about you and praying your appointment goes well. Best of luck. Yes, sometimes people develop anesthesia dolorosa after procedures "kill" or damage the trigeminal nerve. It's a risk, but we cannot get through life without taking them. Please, please keep me posted.

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  3. Kathy before having anything invasive like surgery done, look into Celiac Disease testing. I am finding more and more people online who have digestive disorders such as Celiac that are also suffering from TN. Go to Google and type in Celiac and trigeminal neuralgia. Gluten is found in wheat, rye, barley and even makeup. Don't stop eating gluten until you have the proper tests done so you can be diagnosed properly. Some people have been completely relieved of the pain from going gluten free. Good luck!

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  4. My Dr didn't want to do it either I got SRS...I'm goning on a yr and have not Sterotactic Radiation Surgery...n didn't have any problems ..till like 2 month ago I started to experience numbing..that is one of the side effects..but its much better then the excruciating pain I had...so half of my face is numb....but im not drugged up and always sleepy like when I was on meds. I thank the Lord for everything....everyone stay strong and keep praying for a cure..

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    1. I pray for a cure with you and hope you will be feeling much better very soon.

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    2. Has your facial numbness changed since your post in 2011? My mother has NF2 and for the past 4 months she has been taking gabepentin in hope for relief.--It's not working. The pain seems to be almost constant at the temple and in other random facial areas on her right side. The neurosurgeon office mentioned pain management and visiting a neurologist. Thank you for sharing your personal journey and your SRS.

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  5. I had srs after a year I experienced facial numbness.. But it's much better than the horrible pain..... I had to leave work, was afraid to eat at restaurants on a daily timed medication... No social life...The left side of my face is numb. I quench my teeth all the time... Sometimes drool a little... Slur some words when I talk to fast.. Bite my inner cheek... . And I touch my face alot... Feels weird... But I would like do it again if I had to... THANK GOD for SRS.

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  6. To the anonymous poster who commented Feb 8 2016: I do not have facial numbness and have not written about it. There are other anonymous comments here from individuals who have. I am hoping the person will get back to you. Thank you and God bless you.

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