Joe is a VNS candidate!!!

[qtkitty]

WOOOOHOOOOO!!!!

We were really hoping for this. Joe was going to be going into the hospital this morning for an inpacient VideoTaped Ambilitory EEG. Well he ended up going in yesterday after Doctor appointments all day long ( i was sooooooo late for work * cringes*).

He had 3 sezures over night .. one while he was awake and 2 during sleep... and who knows how much partial activity they caught. Anywho this morning the Dr on call came into the room and said we were going to be discharged as soon as she got the paperwork together because they had all the information that they needed. Basically his sezures are non operable since the sezures effect so much of his brain and medicines aren't working.

She said that he is a STRONG candidate for VNS. They will be having a meeting to go over cases in about 2 weeks where they will discuss Joe's case and decide if they will do surgery. If they say yes then they will schedual Joe an appointment with the neurosurgeon who will be doing the surgery.

We are so excited!!

The down side .. they lowered his medicine while he was there to get better results and they did a base test AKA flashed a strobe light in his eyes to see what the effect was on the brain. So right now he is home alone and feeling wonky as all get out. I felt bad to have to leave him feeling like that, but i barely had enough time to drop him off and get my kester to work ( on time this time YAY ).

Oh BTW for those who are going VNS what in the heck?? VNS is a Vagus Nerve Stimulator.... in basic computer terms it would be like doing a defrag instead of having to hard boot the computer ( brain ).

[Missy]

I am happy for you guys, it seems like a good thing! ...right?? I am sorry he needs the procedure and that he's having these problems, but I am very hopeful for you guys that this will help!!

[qtkitty]

Yes we are very excited... we are hoping that it will cut his sezures down to once a week ( with him on the meds he is on currently.. which the Dr decided to add a new med Lamictal.. now he will be on Keppra, Tegretol , and Lamictal ).. right now he has 2-3 grand mals per day.

[qtkitty]

i mean Lyrica not Lamictal ... Sorry

[shoiji]

I hope this works out for him. Seems as if you guys have really been going through so much.

[missyali]

Poor guy! I hope everything goes well.

[qtkitty]

We haven't heard anything yet from the council... but Joe's neurologist called him just to tell him congratulations and to say that she would like to wait to make an appointment for during or right after he sees the Neurosurgen.

She feels quite certain that he will be approved by the council, because she said that the Dr who came in and talked with us in the hopsital that is her speciality epilepsy and she has been studying it for years. It sounded as if Joe's Dr really looked up to the dr from the hospital. Joe was so excited!!

For now he is able to stay at home at night with his mom and get sleep. I don't have to worry about him being home alone and hurting himself during a sezure since now he is on crutches in the house since we can't get the wheelchair in easily ( we are going to soon and have him use it in the house because his back is starting to hurt to bad for him to use the crutches in the house anymore .. although he will still have to use crutches to get into bedrooms and to go into the bathroom.)

He has started the Lyrica which he says makes him feel numb and tingly weird like. Right now he is only taking 50mg at night. He has promised to take it for a week cause i bugged him to because once he found out it was a controlled substance and addictive he didn't want to take it. Lyrica was originally developed for pacients who have shingles to help with pain due to inflamed nerves because of the chicken pox virus, instead of having to use electric shock to help deadin the pain. Through testing they have found that it can also be used as an anticonvulsant ( side effect pain relief .. which it hasn't helped any of Joe's pain... nor the sezures). If by the second week of taking it he can stand it we are to move the dose to once in the morning and once at night, perhaps that will help with both the sezures and pain at that point.

[qtkitty]

Ohhhhh ... and he is also on a multi vitamin.... by Dr's orders Bwahahahaha ... He wasn't listening to me about taking them but he will listen to me and Dr tag team *lol*

Basically trying to build up his body... hoping to put some more weight on him as well he is definately still under weight at 154lb at 6 ft 2... although BMI says its not true that he can be between 144 and 195 and be "normal". However the issue is he has hardly any fat on his body, because its burned off by sezures. If he gets too thin then the sezures would eat the muscle tissue.. like they were before. In the last year he has been gaining a little muscle mass enough that both he and i noted it in one of his old pictures, but still only the occational fat mass which occurs after several days of lower amount of sezures ( or when we are lucky no sezure days) but then is quickly eaten off when the normal sezure pattern resumes.