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Author Topic: Sooooo Excited .. and worried  (Read 6471 times)
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SezLuv
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« on: March 08, 2008, 09:53:32 PM »

Sorry this is very long.

I have been quietly reading through a lot of the posts made by other members as well as as much information on VNS as i can get my hands on. We have been hoping that Joe could get VNS because it is almost a last ditch effert to control his sezures. He has had Tonic Clonic Sezures for 26 soon to be 27 years. Currently he is having 2-3 grandmals per day and an unnknown number of partials some that are not visably noticable. He is on tegretol 600mg 2x a day, 1000mg Kepra 2x a day, Lyrica 50Mg 1 at night, but monday will be starting 2x a day to try and control the sezures. He his body is starting to wear because of the constant sezing ( and meds)... breaking his nose, dislocating joints, contusions, ect ( and teeth decinigration because of meds). He is currently 6ft2in and weighing in at 154lb ( over the past year we have been lucky enough to increase his weight 20lb by changing his diet ) so now he is with in BMI normal range all be it almost underweight still.  In the past year his back has begun to hurt severly, his last Neurologist told him that there was nothing wrong. She has since retired, and we have found that Joe has a slipped disk in his back. He also has a knee that needs orthoscopic surgery and is so bad because of falling on it constantly that he can't walk on it. So he is confined to crutches (when he can deal with the pain to use them) or a wheelchair, which has triggered a good bit of depression. However, he can't have any surgeries til his sezures are under control ( including teeth pulling ). And constantly in pain because of course no pain meds, since they would cause more sezures.

We had some bad luck with Neurologists here in the last year. His first neurologist decided to retire and recommended the only other  Neurologists in town. Who shortly after decided to move away suddenly dropping pacients with no advance warning. We had yet to be seen by him since there was such a wait to get in. well we finally asked Joe's regular Dr for help. At the time i was 7 mo pregnant and Joe was getting more upset and worried because he wanted to be able to hold his baby with out the fear of suddenly having a sezure and hurting her ( mostly because my mom brought it up  :Really Mad: ). Joe's Dr's aunt has sezures so he understands more so then others, plus he really has a unique personalily genuienly caring for his pacients. He takes 30 mins just going over Joe's meds to see what he can alter try and help and make sure there are no reactions with other meds.

Joe's Dr reccomended WFUBMC and wow we were just taken aback the first time we stepped into the hospital for Joe's first appointment Feb 20th. You walk in and there is a whole dr's waiting room for Neurology and the main section Epilepsy/Neurology. If yall could have seen Joe's eyes he was so stunned, because he has been in and out of hospitals his whole life due to sezures and has never seen any signage designated to Epilepsy. Anyways that day the Dr told us she wanted an inpacient videotaped Ambilitory EEG (by then i was 8 mo pregnant which we told her ) .. we got a call Feb 25 to see if Joe could come in because someone had cancelled for Feb 29th( why so fast because i was so close to being due which was in the records!! ).. of course we said yes!! During that week Joe's neurology Dr from WFUBMC called to let him know he was going to be in the EMU to make sure he was all set up ect. ( she called in person .. which Joe is still shocked that they treat him like a person instead of just a disease.. he LOVES IT !!)They then called us the 28th and asked us if we could come in earlier which of course we said yes although we had a full day of Dr's visits before we could go so it was 9 pm before he got wired up to the EEG. The next day by 11 am the head Neurologist of the EMU came in and said we were going home * blinks * Huh. They had gathered enough information in less then 24 hours to see that Joe's Sezures were inoperable( because the sezures spark from all over the brain) and that he would be an excellent candidate for VNS.

Of course each Candidate has to go through the approval board which is meeting this up coming Friday. We had Joe's Neurologist from WFUBMC actually call and tell him she had heard he had become a candidate and congratulated him since he was hoping to get it. She feels very confident that he will be approved. So we are awaiting anxiously March 19th because they should be calling by then to tell him if he was approved or not.

For me personally i have so much mixed up emotions ( of course being a hormonal pregnant woman doesn't help either ) both Joe and I had sat down and researched and talked about VNS's pros and cons before even going on this venture so i am fully 100% wanting him to get this procedure, but it doesn't mean that i will not be watching him like a hawk when he gets it for signs of problems. His mom has actually come to help out for a month, but i think she is going to end up staying from now on. We had talked her into moving down so we could get some help ( since we have no family around here ). Having someone there to watch him and the baby will put me at ease.. although my work would have been okay with both Joe and baby coming to work with me. I still couldn't have watched him close KWIM.

We are guestimating a 50% chance that VNS will work although Joe has said that if this lowers his sezures to 2-3 a week he would be so happy even if it was just one sezure a day. Although he is hopeful because there is a slim chance that it could lower his sezures enough that he could go back to work ... and someday even drive, but he sees that as a .0001% chance.  
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Birdbomb
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« Reply #1 on: March 08, 2008, 10:42:51 PM »




Thank you for posting your concerns.  It's good to see your hubby has finally gotten a physician he can work with and who LISTENS.

Please feel free to register so others can respond to you on a more personal level.  We will look forward to getting to know you and hubby and new baby!
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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!
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« Reply #2 on: March 09, 2008, 12:33:58 AM »

please do all the research you can on the VNS.. it has works wonders for many and has greatly improved their lifes,but it also has not helped some making matters worse..
you owe it to him,yourself and your baby to research everything you can get your hands on...
we put alot of faith into the vns and unfortunaltly it failed for our son,but others it has not you just don't know....  
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kyle 15 yr old son vns~6-07 removed~3-07

God only gives us as much as we can handle
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« Reply #3 on: March 09, 2008, 02:11:18 AM »


Dear SezLuv  :Welcome:
I am glad you found this website.  There is a lot of information here on people and those who have gotten VNS with epilepsy.  It sounds like you are doing your research well.  I'm glad your husband is getting good medical care with a good doctor.  That means so much these days.  He is on a lot medicines it sounds like to me.  I would read all information on VNS & epilepsy here.  

I got a VNS put in for depression last year.  I think it is helping.  How is your pregnancy going along?  I'm glad his Mom is coming to stay with you for awhile.  If that puts your mind at ease.  It sounds like that is needed right now.  So, your newborn & hubby can both be watched.   :yes2: So, when is your due date?  I hope you have a good delivery experience, and a safe one.  

Keep in touch, and let us know what is going to occur.  It sounds like your hubby needs more help with his epilepsy than his medicines etc.  Just both of you, read as much information as you can while you are waiting to see if he get this procedure.  

Sincerely,
Bonnie
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« Reply #4 on: March 09, 2008, 02:29:41 AM »




Thank you for sharing with us your concerns for Joe.  The two of you have been through alot with changes in doctors, other health issues but it seems that now you are getting physicians involved, which is good to hear.

I became a member of this forum prior to my VNS implantation last July and it was very helpful for me to talk with others who had been through the same surgery, similar recovery issues, etc.  As Birdbomb already indicated, by joining the forum people will be able to give you more input.

A special congratulations on the upcoming blessed event in your family!

 :im_033:
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"Do not go where the path may lead, go instead where there is no path and leave a trail." Ralph Waldo Emerson

VNS implanted July 2007 for Epilepsy.  Activated August 2007.  No success, so VNS was turned off in August 2008 and COMPLETELY removed (including coils) on Nov 25, 2008.
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« Reply #5 on: March 09, 2008, 05:32:11 PM »

Birdbomb ~ Yes, we are very excited about this new Dr.. she is young yet and sometimes seems a little nervious, but she truely seems to care.

When we specifically asked about VNS she was taken aback and called in another Dr to talk to us about it. When the other dr came in we told him most of what we knew about VNS all the good and bad.. he sat there blinking for a second and said "you have done a lot of research".

We knew from other dr's in Joe's past that his sezures were not localized so the change of his sezures being operable was low, still i had a little hope that with new techniques they maybe able to pin point spots ( hey better to hope a few things will work then just one right ).

Joe has been on most of the sezure meds at different doses through out his life. For a year when he was younger they thought that he had grown out of them. They had weaned him off all medicine and he was sezure free. Then with no rhyme or reason they came back with vengence and are still with him every day and night.


momofky~ I can understand your concerns since your son's VNS caused so many issues. We have done a lot of research on both good and bad that has happened with VNS. Basically at this point we have one path to try and Joe still wants to try it even though we know that it could cause death. We always keep researching to find more information about VNS and new ideas on how to help people with epilepsy. We have gone so far as to restrict certain foods from our diet because they could cause Epilepsy.

When we go back to Joe's regular Dr this month we are going to ask for a refural to an allergy doctor.. so that Joe can be tested for both envirnmental and food allergies, just incase some of the sezures are due to allergies. I just happened to think of that one recently while researching sezures. And when i asked Joe he has never been tested for Allergies. Hey worth a shot right??  


Bonnie~ Thanks... Yes i definately feel a little less stressed now that his mom is here, yet more stressed because i have not gotten used to having another person in the house yet. We finally got her room together last night and she got to sleep in it for the first time. That helped a lot because i didn't feel bad for waking her up by coming in the front door.

Actually its been a very easy pregnancy... i had one week where my sciatic nerve acted up so bad that i litterally could almost not walk.. still went to work though.. Joe tagged along to help me get to the bathroom and do any running i needed. This was back when he was on a cane. ( with in a month here he has went from a cane to being in a wheelchair) My 30 week US showed the baby at 3lb11oz with low fluid so i had to go back 34th week she then showed at 5lb9oz. Right now i am at 36 weeks 4 days.. i am due on April 3rd, however my mom and Joe both think i am going to come early because the baby is already engaging the outside world, playing poke through my belly, trying to grab at my finger, getting mad at her hickups, refusing to kick when Joe puts his hand on my belly, Hiding from the US machine, Kicking the heart monitor, ect. Can we say ornery.

One good thing though Joe's sezures appeared 2 accidents that caused brain trama and none of his family has sezures, so its not genetic ( by 99.9 % although there is always that chance right )

gel61820~ Thank you
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« Reply #6 on: March 10, 2008, 03:03:19 AM »


Dear SezLuv,
I think going to an allergist is a great idea.  You never know how one is responding to an allergy physically.  And I believe it could be possible that someone who is very sensitive to something could have seizures if they are very reactive to that substance.  There was a case on tv that I saw where a husband had a severe allergic reaction and he stopped breathing.  His wife called 911, but he didn't make it.  It was discovered that he had reacted to mold in his home.  He had been making repairs on his own home, and had finally reacted to the mold.  It was very tragic. It sounded like the husband was having seizures before 911 got to his house.  From the description anyway.  

As for your pregnancy, I'm glad it has been easy.  Except for the sciatic nerve pain.  If you are on your feet a lot at work; its a good possibility that you will have your baby before your due date.  I used to work as a nurse.  I did work on OB for 10 years.  And I did work Labor & Delivery for about 5 years.  All of the babies run away from the monitor   :yes2: .  I don't think they like the invasion of their space.  It's hard to find them early in pregnancy, as they have more room to run and hide.  So, it was hard at times trying to find where they went to.  But, at the end of pregnancy, they get too big.  So, it isn't as hard to find them.  And you don't have to keep moving the monitor as much; as they can't go anywhere.  There just isn't the room anymore.  

From what you said about the seizure medicines.  I'm wondering if someone can get treatment reisistant to those medicines if they are taken for a long length of time.  Have you asked the doctor that question?  That thought just came to me.  I don't if this can happen with the seizure medicines, but it has happened with other medications.  I'm beginning to think that this is a possibility with other drugs (?).  

Take care, have you thought of joining this VNS Board?  It is very easy if you would like to.  

Sincerely,
Bonnie
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« Reply #7 on: March 10, 2008, 08:50:30 AM »

Welcome!  This is a great place for facts and feelings about how those facts have affected us.

I had VNS implanted May 2006 for depression.  I felt the possibility of "death" from the procedure was tolerable, because I thought I would probably commit suicide if I couldn't find something that provided relief.  

I have had significant improvement in some areas.  I also have daily challenges with side effects from the VNS.  Like most things in life...it was not an ideal outcome...at least so far.  I would not discourage someone from doing it.  Just know that the level of relief your husband receives may not come close to the hopes you have for quite some time...and as you know...may not help at all.  

Believe in the best of what you read and research...also BELIEVE in the difficult/tragic outcomes that some have experienced.  Once you make your decision...have faith in it!
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« Reply #8 on: March 10, 2008, 11:45:34 AM »

Bonnie~ As i was researching i had seen where some people there allergic reaction to certain things was sezures ( although joe doesn't have seasonal sezures so its most likely not a pollin but its possible it could be something he eats all the time like gluten or milk .. since it has been shown that some of the most common allergies can trigger sezures with out the people knowing that they are allergic. I actually talked to a customer that his daughter had had grand mal sezures and they found that she was allergic to peanuts.. she has not had a sezure since staying away from peanuts. )

I sit a lot at work .. its not a strenuous job.. Hotel front desk.. which is why the Dr said that it was okay for me to keep it this long. When she was smaller she didn't hide from the US she actually showed Butt when we went to get the second US aka the sex. It was rather funny. It is like she chases down the heart monitor though and kicks it. The dr laughed at it cause he goes well she kicked and i was like yeah i know *lol*.. i am overweight and he still can't believe it that i can feel her as much as i say i can... even though i can tell them where she is at and if she is head down or head up. Heck he used to tell me where my uterus was *rme* which i already knew because my stomach tickles like up to the point where my uterus stopped, that really confused him.

Depending on the person they can get resistant. Joe has had that happen which is why he has been on so many they used to change him from one to the other, with out much result. With Tegretol he was on the regular pills then they switched him to extended release. Then they upped the dose til he started feeling funny and then backed off the last pill. This was with the First Dr that we did this over 9 mo or so. We had told her we wanted to go for VNS and she said we had to try drugs first and then we could get a refural to a teaching hospital where they would have to try meds and tests again. Once we got the letter in the mail about her retiring it all clicked. Joe's General Dr put him on Keppra i think it was 200 or 500 mg morning and night. When we went in a month later the keppra numbers in Joe's system were night high enough so he upped it to 1000mg. The keppra changed the times of Joe's Sezures from mostly at night to any time of the day or night ( OHHHHhhhh so much fun. ) While we were at WFUBMC the Dr there reviewed the meds he was on checked levels and said that they were fine. She added Lyrica because its the newest of the Anti-Sezures and one of the side effects is pain control. At one dose in the evening it hasn't done anything to the sezures nor his pain level, but we were told that we were to start him on one at night and one at morning today if it was tolerated by Joe so we are trying that and going to see how it does.

The only thing we can think of with the keppra changing the times of the sezures is that there were partials happening all day long and that the med reduced those sezures and because his brain wasn't getting the stimulation or "partial reboots" through those less noticable means that he started having Grand Mals to make up for them. The funny thing is when i told the Dr at WFUBMC that she noded her head and said yes thats very possible. Good to know my logic isn't totally insane *G*

Joe's dad was doused with agent orange when he was in vietnam and because of that was riddled with tumors and also very quickly adapted to different drugs as well as several other odd side effects. However, Joe was concieved after his dousing and has a lot of the side effects that his dad had like adapting to drugs, sensitivity to light, enhanced hearing, ect. Now some doctors do not believe that children of Vets have any effects from their parents being in contact with Agent Orange like Joe's Last Neurologist. Other doctors do say that it has effected the children especially if you talk to a Dr in the VA.

I had already joined and was waiting on the verification *G*


 
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