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Author Topic: Debating about VNS for my son  (Read 5570 times)
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mamabear
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« on: September 29, 2011, 03:54:07 PM »

Hi  My son is 14, he has a long history of complex partial seizures that at times secondary generalize. He had a brain tumor removed and a small piece is still left behind and it`s causing the current seizures. He has seizures daily. His quality of life is seriously impaired due to these very frequent seizures. We tried every possible med and non worked to stop the seizures.  The small piece of tumor that is left can be removed but he may lose his speech, memory and some other important functions used for learning.  We were offered a VNS.  I have read positive and very negative stories here and am very confused, worried and scared to make any decision. 
My son is athletic and is involved intensively in sports. He is worried the VNS will hold him off sports. The doctor said it should not but another doctor said it may affect his hearts ability to race and cope with the intense physical effort of practice.
We were promised that if it does cause problems it will be taken out in whole: wire and device.

The other alternative is try two new med`s. The chance of these helping is low given he tried every possible med available. 

I don`t know what to do and would love to have your inputs.   Undecided   
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Life is not about waiting for the storms to pass....it's about learning how to dance in the rain.
dennis100
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« Reply #1 on: November 21, 2011, 04:19:09 AM »

Try the 2 meds first. The vns should only be used as a last resort. Your doctor PROMISED that if it does cause problems it will be taken out in whole: wire and device. That my be true but he failed to mention the electrodes wrapped around the vagus nerve. The electrodes are rarely removed due to scar tissue issues and the dangers involved working around the carotid artery. Very few surgeons would even attempt it.

Keep in mind that Cyberonics own studies show that 1/3 of the patients receiving the vns show a marked increase in seizures. That is probably something  else your child's doctor failed to mention.

1997 CDRH Neurological Devices Panel

DR. COSTELLO: Good afternoon, Dr. Wilkinson and members of the panel. This afternoon, I will be discussing issues regarding the safety and effectiveness of the vagus nerve stimulation device......................One-third of the patients had some type of an increase in seizures, with 17 percent having greater than a 25 percent increase.................This slide shows each of the studies and the percent seizure increase. As you can see, in each of the studies, there were patients who had greater than a 100 percent increase. In the E05 study, the range went up to a 234 percent increase, while in the E04 study, it went even higher, to a 680 percent maximum range.

pg. 125
http://www.fda.gov/ohrms/dockets/AC/97/transcpt/3299t1.pdf

There are too many unknowns with the vns. The only certainty is clever marketing and the FDA's willingness
to buy into it.

Take my advice and forget that you ever heard of that deadly implant.

Take a look in the Legislative activism section for examples of the reported vns adverse events.




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theathorne
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« Reply #2 on: February 17, 2012, 06:32:21 PM »

I haven't been on this site for a couple of years, but got the Birthday email and logged back in. It is a very hard decision to make. We made the decision to have it put in our disabled, nonverbal son due to medications not being effective. The VNS almost killed him. He developed cardiac and respiratory issues and at one point he would cry but no sound would come out:( I know it was the VNS, because when I would tape the magnet over the device to shut it off, his symptoms would subside and then worsen once again when I removed it. I would definitely exhaust all other means even though I realize meds have their effects too. Our neurologist just recently gave us Ativan Intensol drops to use for his seizures. It is quite effective at stopping them, but does make him drowsy. It is not meant as a maintenance med, but for breakthrough seizures. Just know that whatever decision you make was the best one at the time. It is so hard to know for sure either way. My son was explanted a couple of years ago and his pediatric neurosurgeon removed ALL of it....even the electrodes wrapped around the vagus nerve. Definitely go to a pediatric neurosurgeon. They are used to working with more finite things and I think would have a better chance of removing everything. Best wishes to you and your family:)
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