Bye-Bye VNS!

[Birdbomb]

In Sept 02 I had a VNS implanted for the treatment of epilepsy. To say I suffered from many undesirable side effects would be a gross understatement. As the settings were increased and adjusted, the number of side effects increased too. Up until Dec 26, 03, I tolerated these side effects but then one very nasty one suddenly began.

My unit was set to activate for 30 seconds on and 5 minutes off. Now every time the unit fired up, a numbing pain shot down my left arm into my hand and fingers making the hand and arm useless for the duration. This is not good when holding an infant!

I contacted Cyberonics and the technician I spoke with, confirmed there had been others who had reported the same side effect. I also checked the MAUDE Reports at the FDA site and found several more.

I contacted my neurologist and told him I wanted it turned off STAT. 4 days later, we ran a diognostic on it and checked the leads for any impedance but everything checked out fine, it was then turned off.

On my followup visit, the Cyberonics Rep was there and tried to convince me to turn it back on. (she must get some type of compensation for active units) She also informed me they had never heard of anyone else who had this particular side effect. She lied to my face and then claimed the technician had never told me that!

I knew better! And since that time, I've run across at least 20 other people who have also had this problem.
Anyway, here I am with this thing sitting in my chest. The batteries are still good. I had it evaluated just year before last, to make sure it's still off!

In the meantime, I have been diagnosed with severe Rheumatoid Arthritis. My tendons are rupturing causeing massive build-ups of synovial fluid. Both wrists and ankles are a mess. These tendons must be repaired and the masses removed, my neck is degenerating, but...we need MRI's to see the extent of damage. The VNS is keeping me from getting those MRI's. The only hospital here with the ONE designated MRI equipment, refuses to do any MRI with the generator implanted. Seems there was this terrible accident....

After 6 months of hassles with doctors, insurance and everyday crap, I will finally get the damn thing explanted. In about 12 hours from this posting I will be having that VNS removed! WHOO-HOO!

BTW : I will be keeping my VNS unit. This is the one condition I insisted on. Hold your breath for the photos!

[brain]

Whatcha gonna do Birdy?
Put it on a cake and have a
VNS Party?



Or do you have plans to...



Hope all goes well!

((((((( hugs )))))))

[TeeTees]

Yeah, like Brain says....watcha gonna do next ? Where do you go from here ? Is it a just a matter of hitting the drugs more ?

I hope all goes well BB. I was just wondering - if this device sends out a vibration, maybe I can think of another use for it <ahem>

[Bernard]

Best wishes for your surgery today BB!

[RobinN]

Don't forget to mark up your body and let then know what they are taking out.
All the bast to you.

[speber]

Whatcha gonna do Birdy? (with the VNS that is)

Good luck Birdy!!!!!!

[brain]

simple partial ....

You've been watching too many
commercials again haven't you?



Ummm now I forget what Credit
Card it was -- but what's in your
wallet? 'Cuz I need it - LOL!


-------------------------------------


BIRDY BIRDY in the See Rock City
House ... How's it going so far???

[Birdbomb]

Home.

Sore, tired. Gonna live.

Surgery was 4 hours delayed, didn't get home until 11:00 pm. There was a dead guy in the bed next to me the whole time I was in recovery , NO SHIT! I'll post more details after several hours of deep sleep.



Speber,

NEVER a catapult, always a trebuchet!



Encase that little piece of medical nightmare in some lucite and turn it into a paperweight.

Just as a reminder of what a mere $75,000 (give or take a few $1000 ) can do for one's life.

[TeeTees]

Wayhey - welcome back to our world BB

Glad to hear it all went well - I'm not sure if the Dead Guy was good advertising though ?!?

[Bernard]

So glad to hear the surgery went well.

[RobinN]

ewwwww..... (dead guy)
That thing is HUGE! So glad you are home and on the lighter side.

[angel]

ewwwww..... (dead guy)
That thing is HUGE! So glad you are home and on the lighter side.

hey birdbomb,

Im happy all went well for you the dead guy next to you in recovery... thats wrong.... they should have moved him..

love and hugs to you!

[brain]

(((((((((((( Welcome Home Birdy ))))))))))

Sorry about the bed-side partner.
But sure glad you're safe and sound
and fully understand about surgery
delays!

You just take it easy and think of
farking VNS!

[speber]

Skeet-shooting animated gif's weren't readily available.

[KAM]

Wow, what a way to have to come out of surgery! How are "you" doing?

[Birdbomb]

Getting very sore. The neck incision is much larger than the first time. It's bandaged in such a way, I cannot turn my head or lift it very far. I'm very tired. I got no sleep last night, lots of action going on in my house.

A home care agency is suppose to come to my house and pull the drain out, but I have had 5 different companies call me so far. Oh brother!

[KAM]

It sounds painful, I'll say a prayer for you. Hang in there!

Getting very sore. The neck incision is much larger than the first time. It's bandaged in such a way, I cannot turn my head or lift it very far. I'm very tired. I got no sleep last night, lots of action going on in my house.

A home care agency is suppose to come to my house and pull the drain out, but I have had 5 different companies call me so far. Oh brother!