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In Sept 02 I had a VNS implanted for the treatment of epilepsy. To say I suffered from many undesirable side effects would be a gross understatement. As the settings were increased and adjusted, the number of side effects increased too. Up until Dec 26, 03, I tolerated these side effects but then one very nasty one suddenly began.
My unit was set to activate for 30 seconds on and 5 minutes off. Now every time the unit fired up, a numbing pain shot down my left arm into my hand and fingers making the hand and arm useless for the duration. This is not good when holding an infant!
I contacted Cyberonics and the technician I spoke with, confirmed there had been others who had reported the same side effect. I also checked the MAUDE Reports at the FDA site and found several more.
I contacted my neuro and told him I wanted it turned off STAT. 4 days later, we ran a diognostic on it and checked the leads for any impedance but everything checked out fine, it was then turned off.
On my followup visit, the Cyberonics Rep was there and tried to convince me to turn it back on. (she must get some type of compensation for active units) She also informed me they had never heard of anyone else who had this particular side effect. She lied to my face and then claimed the technician had never told me that!
I knew better! And since that time, I've run across at least 20 other people who have also had this problem.
Anyway, here I am with this thing sitting in my chest. The batteries are still good. I had it evaluated just year before last, to make sure it's still off!
In the meantime, I have been diagnosed with severe Rheumatoid Arthritis. My tendons are rupturing causeing massive build-ups of synovial fluid. Both wrists and ankles are a mess. These tendons must be repaired and the masses removed, my neck is degenerating, but...we need MRI's to see the extent of damage. The VNS is keeping me from getting those MRI's. The only hospital here with the ONE designated MRI equipment, refuses to do any MRI with the generator implanted. Seems there was this terrible accident....
After 6 months of hassles with doctors, insurance and everyday crap, I will finally get the damn thing explanted. In about 12 hours from this posting I will be having that VNS removed! :woot: WHOO-HOO! :woot:
BTW : I will be keeping my VNS unit. This is the one condition I insisted on. Hold your breath for the photos!
fft:
My unit was set to activate for 30 seconds on and 5 minutes off. Now every time the unit fired up, a numbing pain shot down my left arm into my hand and fingers making the hand and arm useless for the duration. This is not good when holding an infant!
I contacted Cyberonics and the technician I spoke with, confirmed there had been others who had reported the same side effect. I also checked the MAUDE Reports at the FDA site and found several more.
I contacted my neuro and told him I wanted it turned off STAT. 4 days later, we ran a diognostic on it and checked the leads for any impedance but everything checked out fine, it was then turned off.
On my followup visit, the Cyberonics Rep was there and tried to convince me to turn it back on. (she must get some type of compensation for active units) She also informed me they had never heard of anyone else who had this particular side effect. She lied to my face and then claimed the technician had never told me that!
I knew better! And since that time, I've run across at least 20 other people who have also had this problem.
Anyway, here I am with this thing sitting in my chest. The batteries are still good. I had it evaluated just year before last, to make sure it's still off!
In the meantime, I have been diagnosed with severe Rheumatoid Arthritis. My tendons are rupturing causeing massive build-ups of synovial fluid. Both wrists and ankles are a mess. These tendons must be repaired and the masses removed, my neck is degenerating, but...we need MRI's to see the extent of damage. The VNS is keeping me from getting those MRI's. The only hospital here with the ONE designated MRI equipment, refuses to do any MRI with the generator implanted. Seems there was this terrible accident....
After 6 months of hassles with doctors, insurance and everyday crap, I will finally get the damn thing explanted. In about 12 hours from this posting I will be having that VNS removed! :woot: WHOO-HOO! :woot:
BTW : I will be keeping my VNS unit. This is the one condition I insisted on. Hold your breath for the photos!
fft:
the dead guy next to you in recovery... thats wrong.... they should have moved him..
