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VNS replacement
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hawiian_girl11 posted:
Aloha,

I am going to be getting my VNS replaced, but do not know when right now.

I have to go thru all the nonsense to get it done. consutation etc.

However pending ankle surgery has to come B4 that and I have to talk to my ankle surgeon's MA on the 10th of June when I see his PA about egetting me double-booked and made an emergency to get in to see him faster. I can not be on crutches with a new implant or it will tear out all the stiches and the VNS.

I have to come back to PHX to have this done both things.

THe PA on the 10th and the ortho when ever I can get in and the VNS doc. I have a new VNS surgeon because the other one has been made hx. I do not know why but the VNS RN said he is Long gone, and I liked him but now I get someone who ONLY specializes in VNS surgeries. THe other dude did Cardiothoracic, vascular and VNS as well.

so I have this delima and I have to come back for all this. I have to see a hand surgeon in Hawaii to see what is wrong with my wrist, and then fly to PHX for the other 2 things.

My neuro gave it the go ahead for the VNS replacement and I was expecting him to turn it down, since the VNS person talked to him between visits out of nowhere, and before my next visit after he had said that we would discuss it at the next visit and now he decides to do this instead of waiting.

I am not mad at him just trying to get rid of the crutches and get my ankle surgery done so I can have this implantation.

I have a 3-4 recoverey from the ankle surgery and then 9 weeks of PT at 2 sessions a week, so 18 sessions total. I can have the VNS done while in PT, but not before.

The VNS is not doing well inside me. When it runs it comes on really weak and the settings are decreasing fast. THe therapy stinks. My szs are out of control, more frequent more swipes to come out of it and longer.

the new one is supposed to last longer than the model I have now. THis one will be 4 yrs on August 25th.

the last one lasted just under 3 yrs

they have a habit of waiting til they run them into the ground with me then replacing them.

Oh. well.

Nancy
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dancer86442 responded:
Wow! Sounds like you are going to be up to your ears in Dr rounds/medical procedures. I feel for you! I didn't realize your VNS had such a short 'lifespan'. I wonder if those w/ new VNS transplants were informed of That??? Or if they have the same Issue of their Drs letting the dang thing run itself into the ground b4 replacement. I know I read one ladies post about her VNS no longer working & her DR has recommended the RNS??? transplant. A small device similar to VNS that is placed in/on?? the brain. Maybe you should ask your Dr about That. Do your 'homework. I think Phylis has an article on the Topic. Hugs & Good Luck w/ Everything. Lots of Love!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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hawiian_girl11 replied to dancer86442's response:
That was talked about but I was not a candidate for that. They are not going to mess with my brain. I have 3 lesions that can not be messed with. SOme of them are too close to vital functions.

THey like to get the VNS as close to gone as they can before they replace it, but then again that is the prefence of my neuro and the VNS representive that works with Cyberonics.

every situation is different and everyone is different and so it goes. Whatever post you read was right for that person but may not be right for me. It is up to my doctor as to how he wants to take care of it.

Squeezing all the juice he can out of everyone's VNS that he takes care of is how he does it. It is not a bad thing he wants to get as much out of it as he can.

He can get an idea of how long they last and report back to the VNS guy and he can report back to Cyberonics so they can get an idea and do things to improve it.

THe model that I am going to get is smaller and lasts longer.

THe one I have now is supposed to last between 5 and 7 years. But because of the close and high settings they used it ran out faster. It will be 4 years on August 25th.

the first one lasted just short of 3 years, the second one ran out short of 4 yrs

it has to do with the settings NOT the VNS itself.

Nancy
 
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dancer86442 replied to hawiian_girl11's response:
Nancy, If I remember correctly the RNS only sits on the brain. They may be able to place it so it doesn't interfere w/ your lesions. It may be worth reading more about & discussing w/ your DR. Just for Info. I'm not saying you Need or Should have it done. OK.? I just know that your seizures are Still uncontrolled & another approach may need to be considered. Has your Dr discussed Cannabidoil w/ you? Would you consider that? It doesn't get you High! I know a lot of the stories out there are about children who are trying this w/ success. But, a Lot of Adults are trying it & it is working for them, too. After many yrs of nothing working! Wouldn't hurt to ask. Rite? Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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hawiian_girl11 responded:
Aloha,

He can not write a Rx and give it to me to take back to Hawai'i with me to get filled.

Cannabois spelled wrong is illegal in Hawai'i.

You can not have it at all in my state.

I know that they give it to kids with szs, I have seen it on the news, and CO has some of the hugest pharmacies for it. I am not sure who else dispenses it.

not here.

just thought I would tell you.

Nancy
 
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dancer86442 replied to hawiian_girl11's response:
I just read some Info about this. Seems cannabis seeds (what the cannabidoil is made from) are considered a Food Source. Thus, it IS legal. I don't know where this guy gets his Info. But, he claims PPL are ordering it on-line. No script needed. Would you like me to find out more?


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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hawiian_girl11 responded:
Hi candi,

I am back in PHX today. They did not have advanced enoughed surgeons for my wrist in Hawai'i, so I am here today. I am at the same facility as I go to for my ankle but at the N. PHX location. I have a really good orthopedic doc that is willing to treat me which means another trip back here from Hawai'i.

I have a really deformed outside wrist bone and a cyst like thing inbtween bones oon the inside of my wrist. The ulna injury happened when I was here iin PHX for a little visit to my mom's and she had me bend down to empty the pool filter after I told her I couldn't and I fell down into the gravel, the hose rack, the plastic bench, the noodles, the bark, and the cement. I got all bruised up and lucky that I did not break the cast.

I still have bruises today from that. THe wrist bone by the Ulna did not appear til after that. Do not know if it is out of joint, subluxed, or broken. VERY deformed.

I go at 2 30, so I will let you know after I get back,

Nancy


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