Cured of Trigeminal Neuralgia after enduring 6 years of excruciating PAIN

I hope this posting will be a source of encouragement to all my friends who may be suffering from Trigeminal Neuralgia. My dad had been suffering from Trigeminal Neuralgia for 6 years, is now healed completely after a gamma knife surgery in 2004, and has been pain-free since then.

We live in Singapore and my dad was diagnosed in 1998 at age of 51 with Trigeminal Neuralgia, the pain is in the Trigeminal nerve on the left side of his face. He is a tough man with super high tolerance of pain but yet TN was able to drive him to despair. It pains me even now to recall the many times when my dad would just be struggling with the facial pain, unable to talk, eat and even drink (at the peak of pain....). And do you know what's the worst feeling a son can feel?... That is, the sense of TOTAL HELPLESSNESS, not able to help in anyway to relief the pain my dad is going through. I would say our close-knitted, happy, joyous family had been dealt a severe blow of gloominess caused by Trigeminal Neuralgia.

To make the matter worst, my dad was further diagnosed in 2004 with Acoustic Neuroma “benign brain tumor”. This unfortunate news, coupled with the fact that medication is no longer providing relief (carbamazepine – already at peak of 12 tablet of 200mg a day), forced us to explore surgeries treatment. My dad went for the gamma knife surgery with Dr Chou Ning from National University Hospital. And what a JUBILEE, that the pain ceased tremendously immediately after the gamma knife and disappeared completely one month after the surgery! The rest are history, our blanket of gloom had been permanently lifted and there is no recurrence of Trigeminal Neuralgia for my dad.

My friends... if you are searching for options to help yourself with Trigeminal Neuralgia pain, or if you know someone who is searching to find the solution to this excruciating pain, the one thing we need to do is get well informed of this condition, ie especially the symptoms of Trigeminal Neuralgia, the potential causes of Trigeminal Neuralgia, the various treatment of Trigeminal Neuralgia, the new advances in Trigeminal Neuralgia. There are many good websites which are under my recommended links. I am also highly recommending an amazing new product called "Ultimate Guide to Freedom from Trigeminal Neuralgia”, which has been painstakingly put together by Jasmina Kovacev, BSc.

Frankly speaking, the sales pitch of this product may be a little overdone but seriously it is value-for-money. An extremely good one-stop info and solution for Trigeminal Neuralgia. It covers almost everything you need to know about different options, especially providing a wide range of alternative non-surgical, non-toxic medication options which I don't find in other websites. It includes the following topics:

• Find out what is the cause of TN? Or causes?
• 8 questions to evaluate your health practitioner before you hire him
• Learn what are common triggers for TN so that you can avoid them
• Want to know the role of stress? We came across a very interesting discovery...
• What diagnostic methods are available?
• Find out what medication is available as a treatment option and what you can expect from it
• Some straight talk about orthodox and holistic therapies (mainstream and alternative)
• Learn: different mainstream options
• Revealed: wide range of alternative options
• Is it true that once a person has it, TN stays in their system for the rest of their life?
• Is it fatal?
• Simple way to explain to your family that it is the worst pain ever.
• The very best ways to cope with TN while you are searching for the right solution for you.
• Video that tells how Jasmina's dad became pain free with Zone Therapy after 25 years of suffering
• Man who was rolling on the floor from TN pain now laughs about it - his audio story is there for you
  

Recommended Resources and Support Groups

1. Trigeminal Neuralgia - Facial Pain - Discussion TN-L:

• To subscribe, send mail to tn-l@uafsysb.uark.edu with the following command in the text (not the subject) of your message: SUBSCRIBE TN-L (YOUR NAME)

2. The Cleveland Clinic Neurology Forum:

• Cleveland Clinic - People can post individual, neurology-related questions in this forum. Neurologist's from The Cleveland Clinic will respond to these questions, in lay terminology. This forum gives people direct access to neurologists within a world renowned medical organization!

3.  The Cleveland Clinic                 Neurology Forum:

• Cleveland Clinic - People can post individual, neurology-related questions in this forum. Neurologist's from The Cleveland Clinic will respond to these questions, in lay terminology. This forum gives people direct access to neurologists within a world renowned medical organization!

Deborah cured of Trigeminal Neuralgia after MVD

Below is a personal story of how former TN victim, Deborah, recovered from Trigeminal Neuralgia after MVD.
Her website is http://www.creps.org/tn/

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My how those words rang out over and over!!! My TN story began in 1992 in the "typical" fashion. My face hurt, no must be my teeth, hmmm... Well, the dentist will fix this. That was the start of 3 months of doctor, dentist, ENT, doctor, dentist, oral surgeon, doctor, neurologist, etc.

Once diagnosed, the reading and studying began. Not just by me, but my mother, mother-in-law and husband, Mike. We discovered that this was something that the elderly got or someone who had Multiple Sclerosis. I did not fall into either category, I was only 38!!!

My husband's research was on the internet. He would search diligently, and just couldn't find much of anything (There wasn’t a whole lot of information available in 1992 on the internet). Somewhere along the way, he did find a list serve group titled TN-L. I subscribed to this and was totally amazed to find out I wasn't alone!!! This group was such a blessing to me. To have people there to reach out to whom truly understood how I felt. My family was VERY supportive, but it just wasn't the same as having people to talk to that could understand how I felt.

It wasn't long before Mike wanted his own web site. We signed on with an ISP and he began creating pages. First a family home page, then a page for his business and then one night he woke me up to come see his latest handiwork. I just started crying. He had taken all the TN links we had found and made a page for ME!!! He asked me what the page should be titled and without hesitation I knew it had to be "You're Not Alone"

This was the start of "You're Not Alone" web site...

It has been a blessing to be able to reach out to fellow sufferers around the world. I am very thankful that I live in this age of technology were we can support each other and not feel isolated.

I have received e-mail world-wide, Italy, South Africa, Holland, Nova Scotia, New Zealand, Australia, Canada, England, Argentina and almost every state in the US. We are not alone!

Through this web site I have been able to "talk" to many sufferers, some I have even been blessed with meeting in person. One thing that I came to realize through these many internet contacts, is that age is not a factor of this dreaded pain as all the medical information I had read stated. I have tried to connect people with like circumstances and pains. Some have joined the TN-L group, which has provided support for them, and in turn they have supported others.


My MVD story – January 1997

Well, from the time I decided to schedule my surgery, I had doubts if it was the right thing to do. At one point, I even made myself sick thinking about it. I had never had surgery and must admit I was VERY scared. I think it was the unknown that was the scariest.

The Lord was the one who helped me through the time of waiting. I would receive notes, emails, phone calls and see friends throughout the month of waiting who constantly encouraged me, reminding that they were praying. I decided that if God did not want me to have this surgery, I would trust him to put up an obstacle. I never had anything come up. I stayed well even though sick people at work would use my phone (uugghh!), I had family over and they coughed all over me. My daughter and husband got sick but I never really came down with anything. Another possible obstacle would have been my blood work and EKG which wasn't done until the day of my surgery. No problem there either.

The day of my surgery, I was awake at 4am. I had to be there at 6am. To calm myself, I had decided the night before that each time I started to get anxious, I would be thankful for the opportunity I had for this surgery (My insurance was completely covering the costs) and to pray for two specific people, who are having struggles of their own. I committed the surgery to the Lord, knowing that he could stop it if He wanted to. When we arrived at the hospital, they had all the paperwork filled out, my nametag and allergy tags ready. They took me up to my "pre-operation room" to change into my hospital gown and fill out some other paper work. One of the nicest things about that waiting time was the warmed blankets they brought me. When the nurse took my blood pressure and said it was good, most people's go up the day of the surgery and mine was within normal ranges. The doctor came in and asked all the questions about the pain (I guess to remind himself of my situation). We talked about his vacation as he had been gone for the holidays. He had gotten the bad flu that is going around and not had much fun. (God had healed him in time to come back and do my surgery as I was his first patient) My husband’s parents came and sat with us while we (my hubby and me) were waiting for all the testing and questions to be completed.

About 9am someone came in to take me, in my bed, to the preop/recovery room. My in-laws and husband rode up the patient elevator with me but then only my husband could go in the room with me. This was where they really started getting me ready. I was very impressed at how everyone getting ready for surgery had their own nurses, anesthesiologists, etc come up and introduce themselves. I felt very comfortable with the ones who said they were mine. My IV went in perfect (I have had trouble in the past with those); my head nurse looked through my binder and said I wasn't ready because there were pages missing. I really felt they cared about me and knew what they were doing. The nurse had them do the EKG and have and anesthesiologist talk to me (the two missing items). I found out that I was in the same room I would be in after the surgery and looked around to find some identifying items so later I would know where I was. There was a cupid valentine decoration and a bulletin board covered with pictures.

When they were satisfied that I was ready, they showed my husband were his parents were and wheeled my bed into the operating room.

Operating rooms are ugly!! Not all pretty blue like on Chicago Hope. I was amazed at how big the room was for just me. The ceilings were soooo high. They had me scoot onto the table and started making me feel so comfortable. They each introduced themselves and told me what their jobs were. There was two anesthesiologists (one was a nurse), there was a head nurse and two others that I can't remember their jobs. All women except for a guy named Igore. He had a heavy accent and was the only one I wasn't too comfortable with. He was probably the doctor’s assistant as he had a big shield over his face. Kind of like a face shield on a motorcycle helmet. Two more warmed blankets, I felt myself relaxing as they put them on me. I told them I couldn't figure out where to put my arms and they added an armrest on one side. The head anesthesiologist leaned over me and told me that she would even let Dr. Nutik perform the same surgery on her because he was a perfectionist. The anesthesiologist nurse told me that the surgeon thinks he's in charge but really the anesthesiologist were. They weren't going to let Dr. Nutik touch me until they were ready. They gave me something in my IV to put me to sleep. The last thing I remember was that I asked them if I should already be feeling the medicine and then reminding myself not to be anxious, God was in control and started praying for my two special people just in case my subconscious would still be working. (I can't tell you if it did or not.)

The next thing I remember was PAIN. Oh how my throat hurt!!! They had warned me but I never dreamed it would be so bad. I guess they saw me stirring because they came over and stuck a yucky sticky lemony swab in my mouth. Later a friend told me this was to help stir up the saliva because my mouth was probably dry. The lady in the bed next to me kept moaning and struggling with the nurses. They kept telling her to lie still so I took that advice and didn't move but just looked around. I wear strong glasses and had a hard time adjusting to the things around me without them. I did see the cupid on the wall and then remembered exactly what was going on. Something funny happened, the nurses pulled up my gown and looked at my stomach. They said they wanted to see if they took the fat out but none was taken out. I thought it was some kind of joke that since I was already having surgery that they should go ahead and take out my extra fat while I was under. (The next morning a nurse asked what was on my stomach and I looked and had a "tattoo" of a railroad track. I asked the surgeon and he had drawn it in case they needed some fat to plug up my head so my brain fluid wouldn't leak out. Ha!!!)

My throat was my main agony as I lay in there. I couldn't see a clock but did fall in and out of some sort of conciseness or sleep. I don't really remember them taking me to my room. The next thing I remember was them making me push with my feet on their hands and asking me questions to see if I had any brain damage. They even threw a trick question in and I got it right. You see, I don't think it is really fair to be asking what year it is on the 6th day of a new year, but I remember thinking; they aren't going to get me on this one. I answered everything right. I remember just opening my eyes was too much effort and only opened them occasionally. One of the first things I wanted was for my hubby to kiss me. I had no pain at all in my face. My youngest daughter and in-laws were also there. I don't remember how long anyone stayed, but knowing they had been there to see me was all the comfort I needed and was ready to go back to sleep.

Every so often, my nurse would come in and ask me what her name was, I asked her how I was supposed to know and she said she had told me. Well, I not good at remembering names and I think it took me three times before I could remember it (although I don't remember now). She sat outside my door all night. She was very alert to watch if I wanted anything. Ice, ice, ice was all I wanted. My throat was so raw.

I had a bandage on my head from being screwed down to the table (don't know why I didn't realize they were going to do that) and the bandage on the back of my head from the incision site. A few days later I would find that some of the reason the back of my head hurt was from the other screw sites. I was black and blue behind my ear and the pressure of my glasses would hurt behind my ear. Lambs wool really eased the pressure from my glasses. (Even after 4 weeks, my glasses still are uncomfortable, though bearable.)

I was in the hospital for a whole 53 hours and then on my way home. I was more than ready because they moved me from a private room to one with 3 beds. One poor lady was having such a hard time breathing and always calling the nurses that I couldn't sleep. Home is a much better place especially since it was only me and my hubby for the first few days. Mike was able to take off until the following Tuesday and was there every time I would move, seeing what I needed. I kept ice packs on my head for days. It really helped with the pain.

Now, this coming Friday will be one month since the surgery. The TN pain is still gone, although I get tickles when touching the former trigger points. I have enjoyed this month totally free from pain. Here is one example of the comments I'm getting "It's so marvelous to see a relaxed smile on your face Deb." My husband keeps telling me how good it is to see me smile. I'm anxious to get on with things that I previously avoided. Knowing that the chance of this being a permanent fix is not 100%, I don't want to waste precious time indoors. I have already enjoyed long walks, walking in the wind and rain without having to bury my head in my hood.

In November 1998 I had the opportunity to go to the second annual Trigeminal Neuralgia Conference in Florida.

My heart still goes out to all those who suffer. I want to continue to add to my web site so others can make informed decisions regarding their health. If there are any questions or something I left out, let me know.

Praising the Lord for His goodness,
Deborah