Roxanne has had seizures since 8/30/87, she was 6. We have tried 16 different AEDs, herbs, and the Ketogentic Diet. She is currently on Neurontin and Topamax. She is now 17.
I heard and obtained information on the VNS 5 years ago, I talkedto a DR who worked in the study about having it done. The hospital where he had moved to was not equipped to do the surgery or to have a Dr. to moniter the device. As fate would have it this is same Dr. who preformed the implantsurgery for us 5 years later.
The VNS or the Split brain surgery was our last options we had. Sowewent ahead with the VNS. We were scheduled to have it in November, but thehospital in town would not work with us on the cost. So we had the surgery(108 miles away) in another hospital where our neurologist is.
She had the implant surgery on 1/18/99 and went home the next day.Shestayed home that week recovering. She complained of her ears hurting. Theysaid it had nothing to do with the implant surgery.
The VNS was turned on 2/1/99, 0.5 mAmps, 30 Hz, 500 mSec, 30seconds onand 5 minutes off. The magnet was also set at 0.5 mAmps. About 2 hoursafter the device was turned on she had 2 panic attacks, I thought she wasgoing to have a seizure. She gripped the chair, turned pale and saidsomething was right. This lasted while the device was on. The next cyclewas no problem, but on the next it happened again. The nurse just said tocalm her and to have her breath deeply. So far it hasn't happened again.
On 2/2/99 Roxanne had a GTC at 5:30am and started having partialclusterseizures at 6:45am. They went on until 12 noon. I did not know to use themagnet. I just figured since the VNS was going off every 5 mins that extrastimulation wouldn't help. (At the next visit I was informed that themagnet is usually set higher.) On 2/3/99 she had another GT seizure at2:30pm. On 2/7/99 she had 4 partials all day and does not remeber the dayat all. On 2/9/99 she had another GT seizure. Then on the 2/14/99 she had aGT at 12:10am and at 7:30am. She also had 2 partials that day which wipedthat day out of her memory to. This is more seizures than what is normalfor her. I talked with the patient rep at Cyberonics and she said in lessthan 1 % of the VNS sugeries increased seizures is possible. We were inthat less than 1%.
On 3/2/99 we had the VNS ramped to 1.0 mAmps, with the magnetcurrent at1.25 mAmps, the other settings stayed the same. No panic attacks thistime. She did complain of her ears hurting and her throat hurting but itwent away the next day. On 3/4/99 she started having the partial clustersat 6:30am and they lasted until 3:00pm. I used the magnet, but it did notseem to help or any of the type of seizures she had during that time. Again I talked to the patient rep at Cyberonics and she said there were 2cases in Florida and two in the study that did have increased seizures withthe ramping of the device. So at least I know we are not isolated and ithas happened to a few others. This is the exception not the rule.
I still know that this device is for her. But with Roxanne being"different" than the norm, I don't expect it to be any easier than the last11 1/2 years.
I will keep you updated. We go back to the Dr. on 2/30/99.I sent the Dr a video of her having these partials, so he could give me hisopinion. Documentation helps me explain to the Dr what I am seeing.