VNS - What Mark Has To Say About Marsha ...

Last Update: 29 June, 2000

May -June 98

The neurologist said "Without a specific starting point, we wouldn't knowwhere to start to cut or where to finish." "We won't place Marsha in harmsway". Those words closed a chapter on my wife Marsha who has suffered fromtemporal lobe epilepsy, ( partial complex and generalized ) over the pastthirty years. Those words meant that after six weeks of extensive monitoringincluding surgicaly placed strip electrodes and a half dozen Ictal SpectScans. Numerous other procedures, and being reviewed by some of the finestneurologists and surgeons from around the world, my wife Marsha was notgoing to be candidate for corrective surgery.

Enter a new chapter to her life, an option and hope that technology mightprovide a way to cope with the epilepsy. Not a cure, but maybe a means toreduce the frequency and the duration of the seizures that over the yearshave taken their toll on Marsha's memories in the long term and over recentyears effect the short term. (note: Short term memory has improved since areduction in meds after all of the testing was over, which resulted in someimprovement in seizure control). Maybe it will mean an end or a reduction inthe drop episodes that happen all to often with no forewarning what-so-ever.But the option was clear to Marsha and our family. We need to stay focusedon a long term objective of better control for the epilepsy. In this casethe new chapter is the Vagus Nerve Stimulator.

July 14,1998

Implant surgery is done at St Mary's in Rochestor,MN ... the operation took2 hours with an overnight stay. A follow up visit at Mayo clinc was donethe following day, then Marsha was released to go home until July 27th, whenshe will return for the first ramp up session. Some laryngitus with hervoice is evident. We hope that will clear up soon.

July 28, 1998

Marsha had the voltage turned on today, the ramping up session started at10:00 A.M. The doctor started the device at .25 milliamps-result Marshacoughed (good sign, unit was working),next we waited five minutes and then Marsha was ramped to .50 milliamps (no cough -no sensation). We proceded towait five more minutes and then Marsha was ramped to 1.0 milliamps theresult was a cough and slight tingling sensation (not uncomfortable). We waited about 10 minutes and the doctor then ramped Marsha to 1.5 milliampswhich Marsha said felt a little uncomfortable. At this point in time it wasdecided that we should leave for about an hour to evaluated if this setting was going to be to uncomfortable, so we went to have an early lunch at theMayo cafeteria. During lunch I could tell that Marsha was under somedistress when the device went off every five minutes. Marsha decided that itwas to strong, so we returned to the doctor and made an adjustment to 1.25milliamps. Marsha still could feel a slight stimulation but the cough wentaway again. After another hour we decided that setting would be fine. So at2:00 P.M., home we went. Marsha's next appointment is in four weeks for anevaluation and additional ramping if needed. She will also see a throatspecialist if her hoarseness in her voice hasn't subsided. (hoarseness sincesurgery)

August 24, 1998

In the past five weeks Marsha has had a total of eightseizures that were noted, this is considerably down from the two a day shewas having early this year. All of these recent seizures were partialcomplex. Two of the events resulted in a fall with no injury, four of theevents happened while Marsha was sitting with a head drop, and the other twohad just started to initiate. The magnet was applied in all of the eventsand the seizures were terminated within ten seconds after the application.Short-term memory is no longer a problem and long-term memory events arebeginning to return. She is starting to remember events that happened earlyin our marriage that she wasn't able to remember six months ago. A throatspecialist said that both vocal cords are vibrating but the left still showssome weakness. He thought that would clear up in a few weeks. Theneurologist is content with leaving the settings at 1.25 milliamps for 5minutes at 30 cycles. In an effort to help Marsha's voice heal he hasreduced the wave length from 500 to 250. The magnet is set at 1.5 milliamps.We will do another visit in late October.Note: It felt fantastic to actually kill a couple of seizures that were starting to initiate by use of the magnet.

October 26, 1998

Another trip to Mayo for evaluation...

It has been two months since the last Mayo visit. Marsha has had twelvemore seizures during this period, all were partial complex and only oneresulted in a fall (no injury). When the magnet is used it definitelyterminates seizure duration within a few seconds. Marsha's speech andmemory has greatly improved, and her voice is getting better. In an effortto reduce the number of seizures even futher adjustments have been made tothe stimulator. The new ramp up settings are now at 2.00 milliampstriggered every 1.8 minutes at 30 cycles. The wavelenght has been set to 500again. The magnet is set at 2.25 milliamps. The next visit to Mayo will bein late December to see the results. Marsha's meds have remained the samesince the implant operation. Perhaps with a little better control over thenext few months a reduction in meds might be in sight. We still believethat the VNS is a blessing.

November 1, 1998

The last session that Marsha had at Mayo may have done the trick. I havenever seen her like this. Absolute perfect control, and her gait is steadyas a rock, and her memory and speech has never been better. I'll get backwith you in a week or so and let you know if we can still claim the same.

P.S. She still has the raspy voice.

29 June, 2000

I wanted to let you know that Marsha is still doing great, we did have to have the settings increased to 2.5 milliamps from 2.0 in January because seizures increased slightly over the previous 3 months. Mayo also increased Marsha's Felbamate dosage to a more effective dosage. That combination seems to have done to trick for now (of course it is hard to suggest Felbamate for others be cause of the risk factors with bone marrow that can occur, Marsha had been on it prior to the risk notification and seems to tolerate it well). She has about 4 to 6 episodes a month, but they usually don't result in any drop(falls) that would hurt her.(Knock on wood). Mayo says she is approximately at the halfway point on battery life on this first device. Marsha's memory retention but short and long term has also improved dramatically. Probably a combination of the fewer episodes and reduction of other meds.

Mark & Marsha are in the Kansas City area.