7 years post CyberKnife and Trigeminal Neuralgia issues

[Warm_in_MN]

Hi friends,

It's been quite a while since my last post.  I'm back for an update, support, and advice from my fellow partners who surely know best the situation we live with.  This is a long story so I'll try to condense it into facts, procedures, and my standard of living.

It's been about 7 years since my CK treatment.  The tumor is darkened (necrosis) and should be dead.  However, to date the tumor has not shrunk (which I believe is unusual).  Then, approximately 3 years ago I was diagnosed with Trigeminal Neuralgia (TN). After many months of treatment from head and neck pain specialists, I contacted my neurosurgeon for a 2nd time and they decided to do a MRI. The first time I contacted them they did not think that the tumor would be causing the TN.  She said that would be really unlikely to get TN from the tumor. But, the results showed the tumor pressing on the blood vessel which is pressing on my facial nerve.  Thus, the cause for my TN.  I'm NOT advising anyone not to do CK because of what happened to me.  There are unknowns.  This was my situation.  It is rare from what I understand. 

I tried anti-seizure medications (Gabapentine, Tegretol)  for the TN and the side effects were very trying in regards to lethargy, sleepiness, concentration, and fatigue besides the stuff I already deal with like (Tinnitus, balance issues, depression, hyperacusis, headaches, fatigue, and of course SSD)  I continued to work as best I could.  Being in outside sales I had the liberty of a flexible schedule.  I could not continue on those anti-seizure drugs so I had Gamma Knife (GK) to treat my TN at the Mayo Clinic.  The Mayo shot radiation into the ganglion with the purpose of deadening the facial nerve to block the chronic pain signals being sent to the brain. Well, the GK did not work for my TN.  I was left with the chronic pain and now a lifetime of facial numbness, tingling, and less feeling. 

There is a wonderful Facial Pain support group in MN that I attend.  At the suggestion of a fellow sufferer and a Dr. from the U of M that regularly attends, that I try a medication called Oxcarbazepine.  It helps somewhat but nearly not where I need to be.  But some relief is greatly welcomed.

My questions to you my friends are these: (BTW, I'm 52 years old)

Do any of you still suffer from cognitive issues?  My tinnitus is super loud.  Sometimes so loud I can't hear someone else speak.  My fatigue is high.  I feel I need naps during the day to refresh some.  I have anxiety and depression that are affected by the all of this and probably vice versa as well.  The SSD is very mentally trying.  Everyday I'm trying to figure out where sounds are coming from and positioning myself so I can hear someone speak.  I am going to try a bicros hearing aid in the very near future. 

Do you think the radiation (twice) once to AN and once for TN could be causing me fatigue and cognitive issues?  Do any of you struggle with this in your lives years after that surgery? 

I'm having a very difficult time making a decision as to whether to apply for SSID.  I have been laid off 3 times since the AN.  But still, I feel like I'm giving in to the effects of the diseases and having to admit I am disabled.  Have any of you felt this same way? Like you've been defeated.  This disease hit me in my prime career time and it really hurts me emotionally seeing how it affected my livelihood.  However, I must do something career wise.  I need to be productive, social, giving and receiving as a part of society. 

Thanks friends!

[sharonov]

I am so sorry for what you've gone through!  My story is somewhat similar, except that I never had cyberknife.  My AN was only 1.4 cm when it was diagnosed in 2004, so I opted for Watch and Wait.  In '07 I had the first bout of TN, on the same side as my AN.  The doctor put me on tegretol (carbamazapine) and it went away.  It didn't come back until '08 or '09, and was worse.  I sent my MRI to several doctors, who disagreed as to whether or not it was caused by the AN.  If it was, then I would have to have surgery, and I was terrified of surgery.  So I waited, and it went away again.  I took carbamazapine (oxycarbamazapine is just a weaker version) every morning and evening.  I guess my body got used to it.  But then in October of last year the TN came back with a vengeance and was so horribly painful that I knew there was no choice--I had to have surgery and it had to be retro-sigmoid (the most dangerous) so that I could get an MVD at the same time my tumor was debulked. I had it debulked because I wanted to minimize the chances of horrible side effects, and mine was slow growing (and I'm old).

I went to House because the doctors there do so many and know what they're doing.  I had the surgery 12/12/16, and 5 weeks later I'm fine.  A little lightheaded, but not bad.  No balance issues, no facial paralysis, and best of all NO TRIGEMINAL NEURALGIA!!!  If it comes back I'll have the same surgery you had to burn it, and hope for the best.

Have you discussed the possibility of an MVD?  I don't know how that would work after the radiation, but it's considered the gold standard of TN treatment.  Also, would it be possible to surgically remove or debulk what's left of your AN, or have you discussed this already with your surgeon.  It would be worthwhile to get another opinion.  My doctor at House was Schwartz, and another good one is Dr. Friedman At Keck, near USC.  They'll give free phone consultations.

It sounds like I'm assuming your situation is the same as mine, and I know it's not.  But I can tell how overwhelmed and miserable you are so am grasping at any possible solution for you.  I, too, was in outside sales for 25 years, but luckily had retired by the time this hit me.  On the negative side, I was 74 when I had the surgery so don't have the physical stamina of a mere 52-yr-old. 

Good luck, and I'm sure in the next few days more people will post answers that can help.

Sharon

[Warm_in_MN]

Hi Sharon,

I am also very sorry for all you've been through.  Thank you for your kind and caring response.

I've met with Drs at the Mayo Clinic and U of MN regarding MVD.   They have told me that it is a 50/50 chance of success stopping TN pain.  However, there is more risk associated with removing the tumor since I've had radiation treatments twice to my nerves.  They also do not recommend any further destructive nerve procedures. If I choose to try MVD, they said to expect facial paralysis for about 1 year with the unknown that it will go away as well as the other issues/risks that can happen from this very complicated surgery. Based on their consult, I feel like the risk is too high that I could still have the chronic pain and add even more issues

Thanks, Bob