Kerry Sue's Neuro Surgery Fund

I DO NOT RECOMMEND THIS SURGERY. 

I have familial hemiplegic migraine type II with torsion dystonia.   I have had genetic testing to verify this diagnosis.  I had the PNS permanent system implanted at the end of October, 2015.   Although the system could abort attacks and had some dramatic results (which encouraged me to go ahead with the permanent surgery), it also caused the on-set of life threatening depression which progressed and worsened with time and use of the stimulator system.

We tried to reprogram the system several times without success.  During reporgramming, it was obvious that certain lead segments could cause severe psychological consequences.  My condition deteriorated quickly and the system was removed in March of 2016.  All side effects related to the PNS resolved fully in less than 36 hours save one.  My neurologist stated that the PNS likely caused the disease to decompensate and I was left with occasional focal seizures which were not formerly a symptom of HM for me. 

Like all treatments, they can be very helpful for some, harmful to others, and all manner inbetween.  Life threatening depression is listed as a possible side effect of deep brain stimulation.  The PNS procedure is stimulation from the "perifery" or outside of the brain.  I am certain, however, that when Boston Scienctific and cooperating surgical centers stop buring these cases, it will come to light.  For now, they are not reporting them to the FDA although legally obligated to do so.  In the meanwhile, they can take advantage of advertising a virtually "side effect free" procedure. 

Stay educated. Advocate for yourself. Never give up.  And take care.   Love, Kerry.