Alice Kennedy, TN Patient

Her Personal Story

I am a 59 year old female.  My TN was diagnosed in 2003 and in the upper 2 branches of the trigeminal nerve affecting the right side of my face.   For the first couple years, my TN pain was manageable without drugs or action on my part.  It hurt when I ate, but the pain level didn’t stop me from living my life.    In 2005 my TN pain escalated to constant, intense, stabbing, electric shock-like, ‘life stopping’ pain.  For those without TN, the pain was pretty much like having pieces of cut glass in my mouth – any body movement caused the sensation of cutting me.  At this point TN began to affect all aspects of my life – talking/eating/etc.  

I checked the TNA website and read all the ‘TN stories’.  One story was written by a physician who had TN.  I had questions about how people with TN, handled jobs that required constant interface with others; because my position required nearly constant verbal communication; I contacted him.   He suggested, as did my neurologist, that I continue working as best I could.  He suggested that I learn everything that I could about TN and that I should explore treatment options/Drs/hospitals/etc and basically put a plan in place while I was able.   Looking back this proved to be excellent advice – basically take control of my TN because it usually gets progressively worse and medications become less effective.  Researching TN gave me options and a plan of action ready to go just in case.   

At work, I cancelled all meetings that I controlled, let all calls go to voice mail and started doing as much communication as possible via email.   I limited ‘talking and interfacing’ as much as possible.  I took a light dose of Tegretol (200mg) so I could be functional. At the same time, I read all the books and articles that I could find on TN and tried any TN remedy that made sense to me, and a few that didn’t. (I would have buried a dish rag in the back yard under a full moon if I thought it would have helped.)     

My ‘TN plan’ was to select a date 6 months into the future.  If my TN wasn’t in remission, I would check into surgical options at Cincinnati Mayfield Clinic.  The Mayfield Clinic is listed as a Center of Excellence for TN and is about an hour’s drive from my home.   During that 6 month period, I would do everything possible to get my TN under control.  I visited a Chiropractor weekly for C1, C2, C3 adjustments and an Iridologist with a history of successful natural healing and energy work for care.  I kept a log and communicated to my Chiropractor via written updates during my visits to limit my talking.  I took vitamins, herbal supplements and B12 shots.  I walked daily and did breathing exercises.  I used saline solution and nasal irrigation, since my sinus area was affected.  I became a vegan. (Much to my husband’s chagrin)  

My daily walks were excruciating.  My facial pain was so intense, I couldn’t outwardly ‘cry’ since this intensified my pain – but I inwardly cried many times throughout each day.  For the first few months, I didn’t get better or worse – I was sleeping 12 hours each night- exhausted from dealing with the pain.  I hid from most people, avoided crowds never knowing if I would be strong enough to talk or answer questions about how I was feeling.

Then, about 4 months into it, I noticed a very slight improvement and I continued to gradually improve until I went into remission.  My remission lasted a 1 ½ years, during this time, I weaned myself off Tegretol and did not take TN medications for a year.   About 6 months into my remission period, I noticed the TN pain gradually increased.  

In July of 2007, my TN was once again fully active, again affecting my speech and activated by facial movement.   I again took Tegretol, my job content was more intense at this time and I went on short term disability.   I couldn’t handle my job and TN.  Four months into my second bout with TN, I experienced no relief.  I didn’t feel I was getting better.

TN surgical options have always terrified me.  In spite of the horrific TN pain, there was always the hope that tomorrow I might wake up pain free…one more day of exercise, one more vitamin supplement, one more chiropractic adjustment just might fix me.  TN surgery involved my face, nerves, head and it all seemed so irreversible an option.   I also read about mixed surgical results which varied, dependent on the surgeon’s TN experience and the patients overall health, so my thoughts were always that was my last course of action.

I reluctantly visited the Mayfield Clinic in Cincinnati to discuss TN surgical options and my overall health.  My first impression was good- I had been used to Dr’s visits where I was better informed about TN.   I found that the Mayfield staff knew and respected TN.   One minute into my discussion with my surgeon, Dr. John Tew, I made the decision to follow Dr. Tew’s direction.  Dr.Tew reviewed my MRI as well as giving me information on what they’ve found that works/what doesn’t.  I was impressed and awed and thankful, but still terrified. My MRI didn’t point to the problem that was causing my TN.  Dr. Tew would operate on me based on my verbal description of TN symptoms.   This was a difficult, difficult decision, but my surgeon, Dr. Tew was a tower of strength and skilled in TN procedures, many years as a neurosurgeon – the suggested MVD surgery was my best option.  I had MVD surgery within 2 weeks of my initial Mayfield visit. 

The actual MVD surgical procedure and recovery went very well for me.   My surgery was on a Tuesday and I was home on Thursday morning.  Dr.Tew said that I had severe compression of the TN nerve.  Dr. Tew had to cut arteries/veins to free the nerve, so it was highly unlikely that would’ve gotten better without the surgery.   I experienced minimal pain from the incision- no more than you would typically experience cutting your finger.  Initially, I experienced double vision and problems with my balance for a couple months, but that is now gone. I experienced numbness on the TN (right) side of my head but all TN pain was gone when I woke up after the surgery.   I did not have a head ache during any part of the recovery.

At this writing it has now been 6 months since my MVD surgery.  I remain totally pain free. YES!!!! I am totally off TN meds.   I still have slight numbness in my surgery area; all other numbness that I experienced is gone. The numbness does not affect any facial movement or restrict me at all. I mention this only to let others know that it exists but is a non issue for me. 

Now, I can again laugh with my grandkids, go to restaurants, call friends, take a walk without considering the wind, enjoy brushing my teeth and I am back at work fully functional – with a smile on my face!  I have my life back thanks to Dr. John Tew and the Mayfield Clinic.   I would make the decision to undergo the surgery option again if it’s ever necessary just for the relief it has given me to this point.  Most important to others with TN - I cannot stress enough, the importance of seeking a Neurosurgeon experienced in TN. 

May God bless Dr.Tew and his team.

Posted 5-28-08