VNS - What Darwin D. Has To Say ...

Last Update: 17 June, 2001

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21 May, 1998

You want the patient's view point! I think the simulator is the greatest thing since sliced bread!!!

Mine was implanted sept 22. 1997 , activated oct 6, 1997 since that timeI have only experienced 4 minor aura's that was controlled via the magnet. Prior to that I had approx. 3-5 seizures per day/week with atleast 2 of them being grand-mal type where I lost consciousness. I wastaking so much medication that the last Dr. stated that he had neverseen anyone so medically intoxicated.

I am now down to just 2 medications and reducing them gradually, ifeverything continues to go as well as it has so far I will be totallymedication free by about feb.1999.

The only problem that I have experienced is an ache in my left petorial(chest) muscle where the unit is located. This could be from use or from bumping the unit occasionally. I have talked to the neuro-surgeon who implanted the device and together we have decided that the device should be placed higher and further in from the arm-pit this may or may not help at least when you raise your arm above your head the device willnot protrude. As I said, finally, I can live a semblance of normal life.

I highly recommend this procedure to anyone whom medication does notseem to be working or the medication is making sick or groggy. Theprocedure takes approx. 2-3 hrs. with a possible stay over-night in the hospital. the simulator is activated when the Dr. feels that thestitches are sufficiently healed. The settings are done in the neurologists office using his office computer and a"wand" that is held over the simulator. DO NOT give up right away the settings must be adjusted until they are comfortable and reduce the seizures. The only side effect that I have experienced is a hoarseness every time the simulator goes off. This is caused by the vagus nerve being located directly behind the vocal cords. This small inconvience is worth it while getting rid of the seizures. The test data stated that 1/3 of all parents will improve approx 95% and1/3 will improve 50% while 1/3 will show no change. Any time I can get 66% odds in my favor I will go for it!!!!

2 February, 2000

As of Feb. 2, 2000 The "VNS" is still working fine . My hopes of being medication free has not come true.

I'm only taking Phenobarbital 150mg & Tegretol 800mg daily. An attempt to reduce these meds failed with the onset of small daily seizures(peti-mals). My "VNS" is set on the lowest setting possible on 5 minuteintervals. My only experience with seizures came last summer (1999) when I was bitten by a large number of Red bugs, after that I have only had about 15 small episodes (no loss of consciousness or awareness) just like a bad case of the chills that would not go away for about 3-4 minutes. My memory and dexterity has improved greatly from prior to the implant of the "VNS". The only problem with my memory is age, so far noone has found a fix for that. Dave can't verify this information but if anyone would like to, you can email my Dr. who is Dr. Robert Woody you can find his email address listed where all of the physicians names and address are located within Cyberonics web site.

7 Dec., 2000

This update is to let you and any one who is researching the device know that "Sometimes" it works for some people and not for others. If you use "Cyberonics" numbers, they claim that 76% of the implant patients receive relief, to what degree is not stated. I was an analytical engineer before I retired from the communication industry (telephone company), and I've kept a detailed record of each one of my seizures, their severity, duration and type (gran-mal, peti-mal et.) since 1993. I have graphed them and found that I have had an 82.3% improvement over all and a 93.6% improvement of severity and so forth BUT that is NOT a cure . I continue to take what my neurologist calls therapeutic level of medication i.e.. 400 mg tegretol and 100 mg phenobarbital daily. I have attempted to take myself off of the med.. without any luck. As of this date I have not had any kind of episode since July 2000.

This is the longest period of time that I have been able to go without any (what I call an episode) meaning any kind aura, flare-up or seizure. As I am a 59 year old male in fairly good shape I consider this livable. I only hope that everyone will consider all of the options be it either medication or surgery before making a final decision and PLEASE DON'T THINK OF THE "NCP--VNS" AS A CURE. it is only another stop-gap on the way to a possible cure. The brain is a strange creature. As my results are not typical they are in the upper percentile am I am very thankful, not everyone can or will receive the same results, just keep in mind the 30/30/30 rule.

17 June, 2001

I don't know if this is of any interest to anyone, I thought that I would send it to you and if you think that it would be of interest then you can add it to my present posted story. Attached is a monthly detailed record of seizures prior to the "VNS" implant and post "VNS" (Sep. 1997).



	1993	1994	1995	1996	1997	1998	1999	2000	2001
Jan	5	16	5	3	5	3	6	4	1
Feb	9	26	6	8	8	0	2	0	0
Mar	9	26	6	8	8	0	2	0	0
Apr	13	12	3	4	3	0	0	0	0
May	10	12	5	5	7	2	0	0	3
Jun	17	15	14	12	24	1	5	3
Jul	21	24	19	17	11	2	2	2
Aug	17	13	12	15	16	5	4	0
Sep	5	5	2	7	10	0	0	0
Oct	13	6	4	6	4	11	0	2
Nov	16	10	9	6	6	0	0	0
Dec	12	9	7	3	4	0	2	0
Total	164	154	93	91	107	24	21	11	5

I will continue to keep this site updated.
Darwin D.