VNS - What Mike H. Has To Say ...

Last Update: 28 June, 1998

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22 March, 1998
David, just wanted to let you know that the surgery went fine. It tookabout an hour and a half. The Neuro hooks the VNS up after the surgeryto make sure that it does not affect the heart in any way. Then he willturn it off and now I will have to go back and see him in 2 weeks so hecan start adjusting it for when he wants it to activate itself. he toldme that they will start it out on the lowest setting and then keepincreasing it until we have it at where we think it will do the best.The only problem I have had is trying to sleep with the stiches from the2 incisions that were made. I will keep you updated as things keepprogressing.

2 April, 1998
I just had my VNS turned on today April 2nd. My neuro set it atthe lowest setting but I could not tell if it was on or not so he movedit up one setting. It is set at.50 and goes on every 10 minutes. When itactivates I get a tingling feeling in my throat. I did have one problemfrom the surgery. You want to see if this has happened to anyone else.After I started to recovery from the surgery I noticed that I had a badcough and my voice was hoarse. My neuro sent me to an Ears,nose,andthroat specialist and he said that my left vocal cord was paralized.After talking with my Neuro and the surgeon they told me today that itwas a nerve leading to my vocal cord that may be damaged. MyNeuor-Surgeon told me today that if my voice does not return in a monthto go back and see the EN&T doctor and if he can't find anything wrongthat he(the surgeon) may have to go back in and replace the "PIG-TAILS"on VNS connecting to the nerve with a different size set. There are twosizes that they use he said he used a #2 size on me and that they may bepinching the vocal cord nerve So if he goes back in he will replace themwill #3 set which are a little bigger. Even if they can"t fit the vocalcord damage, as I told my doctors if I had to choose between a hoarsevoice and having my seizures under control there would be no choice tomake. Having a hoarse voice does not change your life like havinguncontrolable seizures do. I will keep you informed as things keepmoving. My next VNS adjustment will not be until the end of this month.

7 May, 1998
Just thought I would check in and let everyone know how I am doing. Wentto see my Neuro today and gave him the GOOD NEWS!! that I have beenseizure free for 5 weeks now. I go back to the Neuro in a month. If I don't!!! have any seizures between now and the itwill be the longest I have gone in almost 2 years being seizure free. Heleft my VNS at the same setting .75 at 5 minutes. He said why mess witha good thing. As far as my Vocal Cord problem the specialist said myleft cord was still partialy paralyzed but my voice has come back to thepoint that he could not hardly tell there was a problem with it. He toldme that the only problem I might have is when I get a cold that my voicemy sound a little hoarser than normal. So as of right now everything islooking good.

26 May, 1998
Dave, just wanted to let you know that on Sunday May 24 at about 5:00pmI had a seizure. That is the first one I have had in a little over 7weeks and my wife stopped it with the magnet. I had no after effects andhave not had any more. Since that was the only one and if I don't haveanymore I am going to wait until my next office visit before I go backto the Neuro. It is only a couple of weeks off. Will keep in touch.

12 June, 1998
I just went to my Neuro today. I had a little set back. I hadone seizure on May 24 and then on June 5 I had three in my sleep. Nowfor the good news My wife stopped all but one of them with the MAGNETand then I had no after effects from the seizures. My Neuro was pleasedwith the fact that they were stopped. He did turn my VNS up from .75 ampsto 1.00. Now for the other news. Because there have only been 2operations done locally I was asked if I would mind having my surgeryvideo taped and be interviewed by a local TV station and also by TheUniversity of Louisville. well today I became a TV star. While having myappointment both of them came in an interviewed my Neuro, my Neurosurgeon, and myself. The local TV station does reports about new medicalnews all the time and when they heard that the VNS was being done herethey wanted to do a report about it. It will be aired next week so Iwill let you know if I will continue to stay on this board or follow mytrue calling The U of L TV crew said that they do this kind of follow upfor the Medical school and also sell these type of Human Intereststories to other TV stations. So who knows you maybe seeing me on yourTV in the future. Even though I had the few seizures I feel 100% betterthan I did before I had the surgery. I'll keep in touch.

28 June, 1998
Hi Dave just wanted to give you an up date on my condition. On June 15thI had a real bad day I had a total of 9 seizures, 3 of them were GrandMals. The MAGNET did not stop all of them but it did stop the Grand Malseizures. I also had some depression from the seizures, I went back tomy Neuro on June 25th and he adjusted the VNS to 1.50 at 5 minutes. Ihave another appointment in 2 weeks if things don't improve I will goback in. I will keep you up to date on how things are going. Talk to youlater.

30 Sept., 1998
Its been awhile since I have up-dated my VNS page. On Sept 22 myNeuro moved my Vns too 2.75. I am only taking 500 mgs of dilantin and amoff tegertol. The reason for the change in meds is that I was havingvery bad reactions to the tegertol in my Post-ictal period afterseizures. I would go for a week at a time with out sleep and my mindwould not stop and it was coming up with all sorts of weird things. Nowmy seizure activity has increased over the last couple of months, BUT mywife has been able to STOP HALF OF THE SEIZURES that I have had with theMAGNET. By increased activity I mean that instead of only having oneseizure at a time there were a few times that i would have 6 or 7seizures a day. But all in all I am not sorry I had the operation as Isaid my wife stopped 50% of my seizures before they got started so thatthat much of grief my body didn't have to go thru. I will try to keepmore up to date in the future. Mike

6 Nov., 1998
My neuro is taking me off of Dilantin and switching me to Carbatrol. anyone have any info about this one. After 14 years the Dilantin was justnot doing anything and I just have not had any luck with any other medsthat he has tried me on. Any help would be welcome. On my VNS he hasmoved it to go off every 3 minutes at 2,50. A couple of weeks ago I had8seizures in one day with 2 of them being Grand-Mals and the VNS magnetdid not stop any of them and I couldn't sleep for a week after theseizures so we are trying something different.