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Author Topic: kyle was turned off!!  (Read 8150 times)
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momofky
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« on: December 04, 2007, 10:26:26 PM »

as of yesterday afternoon at 2 pm kyle's VNS was turned off and were praying his seziure pattern get's better!
he had 3 more seziures since sunday... my wonderful sister came in from out of town to help me take him as i was afraid he was going to have one in the car.(he did ) but my sister hasn't seen a seziure since he has had the VNS implanted and noticed different things.like as the unit was going "off" he almost  rolled into a seziure,his color looked almost grayish green before the seziure, and she was there after they shut it off and his color came right back... it was just like when we used the magnet in the past almost like the VNS triggered a seziure!!
he hasn't had one since 1:43pm yesterday ... so were just in the "watch and wait period"!!
 
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kyle 15 yr old son vns~6-07 removed~3-07

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Fay
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« Reply #1 on: December 05, 2007, 04:32:05 AM »

This is VERY interesting KylesMom. I DO NOT want to scare you but felt that I needed to tell you this- Mom to Mom: I can almost bet you that when Kyles VNS went off it affected his blood pressure and possibly his heart rate too. That's what they discovered was going on with Scott. The low blood pressure also affected his oxygen levels causing cerebral hypoxia attacks that required oxygen. At first it was mild and just caused seizures then like you discribed it affected the color of his skin. By the time we finally got home oxygen he was turning bluish gray several times a day plus needed oxygen all night too. His blood pressure started off being low sometimes but then stayed low all the time. We had no idea it was the VNS until after he became completely seizure free on ketogenic diet. Scott has Lennox Gastaut Syndrome so had hundreds of seizures a day. The low blood pressure, the grayish color, the paleness, the constantly being tired, etc (EVERYTHING!) was always blamed on the seizures, so after the seizures completely stopped they finally listened to me and started running tests. Tests don't lie (and neither did I!)!!! When the Neurosurgeon (not the same one that implanted it or that replaced the generator 2 years later) removed Scott's VNS, he was completely surprised to discover that Scott's vagus nerve had almost been completey pulled out of the neck muscle sheath by the VNS wires. His scar tissue had grown in a such a way that it had imbedded his wires into the neck muscle sheath so prevented the wires from moving. Every time Scott moved his neck, it pulled on his vagus nerve. The very back of the VNS wires were imbedded into the neck muscle sheath where it opens which stablized the vagus nerve and prevented it from being completely snapped in two. He told us that it was a miracle that the nerve hadn't been ripped in two and told us that all it would have taken is a light touch in a certain part of his neck and the nerve would have ripped in half. he also told us it's a miracle Scott doesn't have more medical problems than he has. He confirmed that the medical problems Scott developed after the VNS was implanted was caused by vagus nerve damage caused by the VNS. We are just glad it's out. The coils are still implanted but i can understand the neurosurgeons view of being scared to remove them too though. he couldn't see them for all the scar tissue so cleaned off as much scar tissue as he felt comfortable removing, then tucked it back into the neck muscle sheath. He did tell us he couldn't tell us if it would cause problems in the future or not. He has no idea. So about all we can do is pray it doesn't cause any. Only time will tell.
Believe me, I don't want to scare you but simply make you aware of the problems we had with Scott even after his VNS had been completely turned off. I don't want you guys to suffer the way we did so I'm speaking out as a friend.
I'm praying that because Kyle hasn't his VNS very long that he's ok and the VNS hasn't caused any vagus nerve damage. I couldn't live with myself if I hadn't told you all of this. I don't want another kid or parent to go through the hell we've been through. I'm not a doc or nurse- just a Mom telling her son's VNS story. Your son's VNS story will be his own unique story so please don't assume what happened to Scott happened to Kyle too. Hugs, Fay
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Birdbomb
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« Reply #2 on: December 05, 2007, 06:21:06 AM »



You must be a very frazzled mom!  After having such a good beginning  for it to turn out like this!  Over the last 4 years, I have communitcate with countless others in regards to VNS.  People from all over the world have contacted me and told me their experiances.  I just want to say this...Kyle's situation isn't unique, it's happened to others.  Things start off grand just to turn very sour.

Sometimes, just turing the unit off for a few months, give the body time to rest and adjust and trying again may do the trick.  But if he goes sour again, then you know VNS was not the right choice.

Please don't beat yourself up about this.  Since there is no way of determining who will reap benifits and who will not, it really is out of your hands.  We all want the best for our children.  Most of us will walk through fire to protect them, yet with anything medical, we are almost helpless.  We are at the mercy of trained medical professionals and we want and need to trust those who oversee our health.

If information about a product has been supressed because it may show the product in a not so good light, we need to being those responsible to account for it.  We can say doctors are so busy and have a hard time keeping up with new techknowlegy, but if they are going to suggest the product then they ought to be well versed in the good and bad about the product and to LISTEN to the patient.

When test studies are done, prime candidates are chosen.  But not everyone using the product is a prime candidate, in fact most are far from being prime.  So the product may and often does react differently than the test subjects. That's where I think doctors fail us.   They may expect us to fall into the range of the test subjects, but we don't.  I had a very interesting conversation with my neurosurgeon yesterday about VNS and the effects on the body.  I mentioned Scott's situatuion and we spoke of VNS for depression and CMS decision.  Now he actually works with Medtronics and the DBS system but will implant VNS however even he wasn't as informed as some of our members are.   I think much of that goes back to the training they get from the company. Back to the beginning. And back to LISTENING.

I am glad you were able to get the doctor to turn the unit off.  So many will argue with the patient.  Only you know your son and you need to trust that gut feeling.  You can always try it again in a few months and who knows, it may work.

Keep us posted on his condition.  He may have a flurry of seizures from the rebound but they should fade into a more "normal" pattern.  It wasn't until I turned my VNS off that I became seizure free.

Good luck!  We are all rooting for Kyle!  


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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
momofky
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« Reply #3 on: December 09, 2007, 05:20:59 AM »

thank you both...:)
yeah it's been so hard.... he's doing well so far,he has gone almost 5 days without a seziures,where before he was having them almost everyday..... were thinking maybe it really was the vns causing all of those seziures.....  my husband think we made the wrong decision,and having this device  implanted... i guess we'll just have to wait and see...???? i'm sure we'll know more as time goes on,and able to compare....
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kyle 15 yr old son vns~6-07 removed~3-07

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Birdbomb
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« Reply #4 on: December 09, 2007, 06:02:54 AM »

I am so glad you posted.  We have been all thinking of Kyle.  How is he feeling in general?  Does he feel better with the unit off?
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
momofky
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« Reply #5 on: December 09, 2007, 01:17:10 PM »

thank you all for your support!! sometimes i feel sooo alone and frightend and it's nice to know i can come here and you all truely understand how i feel!!!  :bigarmhug:
yeah he told me the other day "i feel better it's off"... i know he's very stoned and sometimes he's really not making alot of sence,but i know he's feeling better... we have an appt the 18th with a new dr. at a different hospital...DONE with his dr. at this point!!! she hasn't even called for almost a week.. i mean he's "one" of her patient's that has had the VNS turned off and there have been no futher instructions on his med's ,or anything... wow!!!!! it's almost like since we turned it off she doesn't want anything to do with him??? hummm that's got us thinking WHAT KIND OF DR.IS THIS????? i know he'll have seziures again,were just hoping that they just don't start and stay like they were.. he had 13 seziures in almost a 2 week period~... that's nothing like he ever had!!!! i really think the vns was making his condition worse!! i mean as soon as we turned it off he hasn't had one???????  :huh:  
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kyle 15 yr old son vns~6-07 removed~3-07

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labrat
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« Reply #6 on: December 21, 2007, 01:35:18 PM »

How is Kyle doing now?   : xmas :                                      
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labrat
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« Reply #7 on: December 27, 2007, 11:43:09 AM »

How did Kyle do over the holidays?                    
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momofky
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« Reply #8 on: December 28, 2007, 02:00:56 PM »

he's done good, he had 2 seziures last thursday... since the 4th of december that's all he has had, beileve me that's still not good,but he was having them everyday!!! and they were sooo much different! they were INTENCE and very aggressive!!!!

this last one he had was the way they always have been.. we have noticed something different since it's been shut off his back has been hurting and some of the myoclonic jerks are bigger?? before he had more clusters sometimes 10-15 at a time? now it's one BIG one?? very strange... anyone heard of back pain with the VNS or after shutting it off?? he did work out last week and i'm wondering if he pulled something??
 
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kyle 15 yr old son vns~6-07 removed~3-07

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« Reply #9 on: December 29, 2007, 04:15:57 AM »

I have a friend that has had the VNS for a year and about four months ago she started complaining with her back. She doesn't know if it has anything to do with the VNS. She's going to a Neurologist soon.
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