Question for VNS patients: Should I be concerned?
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UPDATED: Wed, 04/09/2008 - 1:19pm
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banffgirl
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on another forum about vns, a member wrote this about me when i asked him how he could write against vns when he has no experience with vns, or does he have a medical degree? this is his answer:
I am not playing doctor. Your veiled implication is repugnant - especially in light of the fact that you solicited opinions from people on forums when trying to decide whether or not to get your own VNS.
when i read this, it was clear that anytime we ask each other for each others our own experiences, be it for different meds, surgery, vns, or whatever it is, this person thing we are all repugnant.
so i ask you my fellow e friends, is it wrong that we ask each other about our personal experiences and wiegh that with other info we get from our doctors and then discuss this with our spouses, parents or who ever. and also pray on making the right decision?
i dont think so!
banffgirl
life is fragile, handle with prayer
By banffgirl at Thu, 03/27/2008 - 3:35pm | 541 views | 35 comments
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Recent Comments on this Discussion
Hi banffgirl,
Yes, the choice of the word "repugnant" is a poor choice when "uncongenial" would weigh the extent of
expertise in informal opinions that are questioned of legitimacy.
Opinions about something that a person has no direct experience with, nor an advanced medical degree
with (which may be legally impossible), doesn't necessarily preclude a valid and well founded opinion.
Such informal opinions can be accepted or rejected after weighing, but not much else. An excellent
example of this situation on a website about epilepsy are opinions about marijuana as a treatment for
epilepsy.
Critical thinking about most everything involving epilepsy is difficult, and I have to be carefull of
the "Forer effect" misleading me; I try to make amends for this problem by considering a diametrically
opposite opinion against any opinion that seems overly plausible. I also find the Power of Positive
Thinking tempting to forming positive opinions that could easily not be justified, but distracting to
very important issues, especially with epilepsy.
Trying to gain understanding of an opinion that seems to violate logic by trying to obtain clarification
can be a minefield, as some individuals cannot easily tolerate any question to their opinions when
they firmly believe their opinions are very sound, and they will often attack the messenger. When
this happens, it is next to impossible to stay on the subject matter, even with an important subject such
as epilepsy, but ignoring possible errors in an otherwise accepted opinion could be disasterous with
epilepsy.
Well, it looks like I found this thread a little bit late, and for not being here to support you bannif (and all of you) I am truly sorry. Bannif, I too have been the subject of this type of attack on these forum page, not by this person, but by people like them. They like to portray them selves as smart and helpful yet they then go on to to degrade, insult others and prop themselves up in the process. Banif, you are only degraded if you allow yourself to be. To those who I wont address by name, your unworthy of time and attention.
Bannif, PLEASE feel free to come here or to the chat and share your thoughts it is the RIGHT thing to do. In my case, a lot of the time, it is the ony 'release' I have. My wife tries, but she really doesn't understand. You all do,we're all in this togeather. Be well!
Wookie a/k/a Chris
Ladies I think you should stop with this topic. You are all making Bryan's points by acting this way. Stop preaching and stop trying to control everyone. Don't run to the moderator to get other people's emails taken off. It's childish. He made a good point about the forum being ruined by people who are emotionally needy. It almost always causes trouble for everyone else.
Title edited to calm down the emotions of this thread. Additionally, I removed a post that was flagged as offensive. If this inadvertently removed another thread, I apologize in advance.
People are always encouraged to share views but when reading and responding to emotionally charged posts, consider lanuage and how this can be interpreted carefully before posting.
Thanks to all,
Epi_help, Resource Specialist
FIRST OF ALL BANFF, NO I DON'T THINK IT IS A MISTAKE FOR US TO COME HERE AND ASK EACH OTHER ABOUT EXPERIENCES REGARDING SURGERIES, MEDS, ETC. THERE IS A LOT WE CAN LEARN FROM ONE ANOTHER, THEN OF COURSE TAKE IT TO OUR OWN DOCTORS AND HAVE THEM APPLY WHATEVER PART OF IT MAY/MAY NOT BE APPROPRIATE FOR EACH OF US INDIVIDUALLY.
AS HAS BEEN POINTED OUT REPEATEDLY IN THIS THREAD, WE CHOOSE TO READ OR NOT READ THE THINGS WE EACH POST HERE. I DON'T ACTUALLY POST VERY OFTEN, AND CAME ACROSS THIS QUITE BY CHANCE, BUT IT MAKES ME ANGRY THAT PEOPLE THINK WE HAVE TO DO THINGS THEIR WAY. SURE, THEY ARE ENTITLED TO THEIR OPINIONS, BUT YOU ARE ENTITLED TO ASK YOUR QUESTIONS AND STATE YOUR OPINIONS TOO. AS A LONG TIME MEMBER OF THIS SITE YOU HAVE OPENED YOUR HEART AND ARMS TO MANY OF US (ME INCLUDED) AND NOW THAT YOU NEED SUPPORT THEN IT'S TIME FOR US TO STEP UP TO THE PLATE AND OFFER IT TO YOU.
AS KATHYC POINTED OUT, YOU DON'T NEED ANYONE TO TELL YOU HOW TO SPEND YOUR TIME. WE ARE ALL CAPABLE OF MAKING OUR OWN CHOICES AS RESPONSIBLE ADULTS, AND IF YOU WANT TO SPEND YOUR TIME POSTING HERE THEN THAT IS YOUR RIGHT. DON'T LET ANYONE TELL YOU OTHERWISE.
AS FOR YOUR VNS, I'M THRILLED THAT IT HAS BEEN SUCCESSFUL FOR YOU. LONG MAY IT LAST BANFF.
JUST A QUESTION FOR YOU BRYAN...WHAT WAS THE NOTATION ON YOUR POST OF 4/8/08 AT 1:36 P.M. SUPPOSED TO MEAN. SURELY YOU'RE NOT SUGGESTING THAT BANFF OR ANY OF THE REST OF US ARE MENTALLY IMPAIRED. IF THAT WAS YOUR INTENT, IT REALLY WASN'T A NECESSARY THING TO PUT IN A POST.
THIS IS WRITTEN IN CAPS FOR THE VISUALLY IMPAIRED.
THANKS FOR REFERENCING MY POST, PICK....APPARENTLY IT WAS REMOVED. BOTH OF THEM... AND YET WE HAVE A POST THAT IS SIGNED THAT IT IS WRITTEN FOR THE MENTALLY IMPAIRED ... WHICH BY THE WAY WAS POSTED IMMEDIATELY AFTER I COMPLETED MY POSTS. NICE.
HOPEFULLY YOURS WILL REMAIN.
NO PROBLEM FOR THE REFERENCE KATHY. WHAT YOU HAD WRITTEN MADE A LOT OF SENSE.
THIS IS WRITTEN IN CAPS FOR THE VISUALLY IMPAIRED.
HI KATHY,
EPI SAID SOME WERE REMOVED BY ACCIDENT WITH A FLAGGED ONE. I AM GLAD PICK DID REFERENCE YOURS, OUR MENTALLY IMPAIRED SHOWS FLAGGED, SO HOPEFULLY IT WILL BE GONE SOON.
God Bless,
banffgirl
life is fragile, handle with prayer.
YEA SYLVIA, YOU COULD BE RIGHT. BENEFIT OF THE DOUBT, I GUESS.
I HOPE ALL THIS SNIPING AND CRITICIZM OF OUR SUPPORT AND CARING FOR EACH OTHER ENDS. THAT SUPPORT AND CARING IS WHAT MAKES THIS PLACE WHAT IT IS....
WRITTEN IN CAPS FOR THE VISUALLY IMPAIRED.
KATHY
REMEMBER, GOOD KARMA KATHY! THAT WHAT YOU SAID! LETS RADIATE GOOD KARMA!
God Bless,
banffgirl
life is fragile, handle with prayer.
YOU'RE RIGHT AGAIN, SLYVIA!! I'M RADIATING! NOTHING BUT GOOD FEELINGS AND POSITIVE THOUGHTS!
WRITTEN IN CAPS FOR THE VISUALLY IMPAIRED.
KATHY
MAKES LOTS OF SENSE TO ME BANFF. HERE'S HOPING THINGS CHANGE SOON.
WRITTEN IN CAPS FOR THE VISUALLY IMPAIRED.
huh...you know, I feel deja vu here, like I've read this same topic, involving similar people or maybe i should say person, I admit my brain doesn't remember well, months ago, maybe even a year ago.
Anywho, glad your vns is working so well, what a relief that must be.
THANK YOU GINA! I AM GLAD IT IS WORKING TOO! WHAT A RELIEF AFTER THE LAST 5 YEARS. I AM SOMEWHAT NOT SURPRIZED THAT THERE IS DE JA VU INVOLVED AFTER READING OTHER COMMENTS. OH WELL, LIFE MARCHES ON.
THIS IS IN CAPS FOR THE VISUALLY IMPAIRED.
God Bless,
banffgirl
life is fragile, handle with prayer.
TO ADD A QUOTE (WHICH I FIND RELEVENT TO THE DISCUSSION) FROM CONAN THE BARBARIAN:-
THAT WHICH WE CAN WALK AWAY FROM WETHER WE WIN, LOSE OR DRAW MAKES US THAT MUCH STRONGER. SEE YA BERNARD BYE!
BY THE WAY I THINK YOU ALL KNOW BY NOW I'M FROM THE U.K AS WELL AND I WAS JUST WONDERING WERE BEX WAS FROM I'M FROM HULL
EVERY ONE GOOD LUCK WITH THERE EPI TREATMENTS NO MATTER WHAT IT IS
PLOPDAN U.K
ty plopdan,
its amazing how many people have told me about problems with bernard. i didnt even use a name, and it came out of the wood work by him, guitly feelings, no he just likes to advertise his website every where he goes. so if we could really say bye bye, i am with you all the way! he is not worth the trouble to mess with.yes conan quote is so true! i am stronger after walking away from the ridiculous forum that started it all. for i know who knows about vns personally and who does not. 2 weeks tonic clonic free, YES to my VNS!!!!!!!
God Bless,
banffgirl
life is fragile, handle with prayer.
lol... That's not an honest or correct characterization or interpretation of my comments, but if it makes you feel better, carry on...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Check out my chart of alternative epilepsy treatments.
Sylvia please try hard to look the other way when it comes to these people, those that matter,your true friends here adore you and understand.
BERNARD and company...
Those that know me here know that it takes alot to get me riled up. My motto has always been "step away from the computer" and I did. Having said that...I took the time to look at your site and ended up reading some of your posts which have dissapointed me a great deal. The first one I was taken to was a post by you asking "Am I out of line" I am guessing because of the VNS resource discussion link within it.
I was shocked at what I read there and will not return nor suggest anyone use your site. If the moderators and "Super Moderators" can post the way they have on this subject and others then I would not feel safe to post there.
RobinN "Super Moderator" reply....I don't think you stepped out of line here at all.
You kept to the point offering your take on the situation, and it
appears that the young lady (whom I will admit I know nothing at all
about), has her dander up because you don't agree with her decision.
Sounds like she still questions her decision and is defensive.
Other than the two who else have you upset? Do they not have
administrators there to moderate.. guess the mud hasn't been thrown yet.
You have upset me and you have "thrown the mud" You yourself said you know nothing about this member who is a great asset to this site and needs the support given here. Our Admin and moderators would address such comments that have been made by you.
Birdbomb...your comments about the members involved in this vns topic is childish, hurtful and deplorable. To post that two of our members are "trolls", "pinheads" and that " this woman has her panties in a wad and her shoes on the wrong feet" by a moderator is to me uncomprehensible. To then go on about another member who you've also obviously not used moderating skills with only prooves this more. "Sick, manipulative, lying BOS" Are words no one wants to read in an epilepsy site.
brain/Sharon....your comments that they are trying to draw something out of you to make it reportable is very wrong. No such childish behavior is happening here. Also to comment on one of our members using all caps is out of line without understanding why, is out of line on your part. Then in another topic, which I found very interesting and helpful as a mentor, on Munchausen by Internet your comments I felt once again were rude. "too much time on their hands" I think you need to reread the article. "I do LURK because I find them quite amusing, entertaining and make me laugh alot" Try being on the helpful, supportive and moderating side of that. You will most deffinetly not be amused. Your signature of being Advocate and Member of the Epilepsy Foundation puzzles me. Not sure I want to visit that site either. I would feel ashamed if I were you.
BuckeyeFan....your comment was the only one that was reasonable about the issue and "the person does'nt sound nasty or bad in other postings" thank you for taking the time to get to know her. I am however sorry that you do not find the comfort that you need here.
Bernard I would like to make a suggestion to you. Read up on moderating and choose your moderators carefuly. Beware of how you post yourself and don't post your links here so that our members see such nonsense and feel angry, hurt and dissapointed. Might want to think about removing those "mud slinging posts" and keep your site a friendly supportive place to visit.
It is a sad day when those of us coping with epilepsy cannot even discuss or find/give support from the only place we find people who truly understand.
Quote....Be kinder than necessary because everyone you meet is fighting some kind of battle.
Colina, mentor here4u
NICE POST COLINA. WAY TO GO!!
Wow Colina that was great!!! I'm not a frequent poster here but read them daily. Just wanted you to know that your words are much appreciated. Thats for those of us who really do benefit from this site. thanks, Mary Beth
colina,
i thank you for answering this forum, i just wanted to let you know i have now gone from having 8-12 tonic clonics a week to having none in 2 weeks now. how is that for my new vns. pretty spiffy, huh? i am so happy with it and i am just going to ignore and avoid downers like bernard. i find that educating each other by sharing our experiences is a great way to go into the docs office with more questions on a list than i would have without imput from others. how else would we know things to ask about ? i for one have terrible memory problems so the forum is great and i keep track of everything i learn on word perfect files.
everyone here is great, and if you see anything i write in caps, i am not yelling, we have quite a few visually impaired people on this sight. some are friends of mine. i am not up on web lingo. didnt know there was anything but typing on webs, but i am older and only frequent e.com. no instructions here, lol
love you all,
God Bless,
banffgirl
life is fragile, handle with prayer.
CONGRATS BANFF!
I'M SO HAPPY YOU ARE DOING WELL WITH THE VNS AND THINK YOUR POSTS ABOUT IT HAVE BEEN EXCELLENT. TY FOR SHARING.
I TOTALY AGREE WITH HOW USING OTHER PEOPLES SUGGESTIONS AND EXPERIENCES HELPS TO PREPARE US FOR DOCTORS APPOINTMENTS. I GOT SOOO MUCH FURTHER WITH MY DIAGNOSIS AND TREATMENT BECAUSE I WAS PREPARED WITH A BETTER EXPLINATION OF MY SEIZURES AND THE QUESTIONS I NEEDED ANSWERS TOO.
CAPS? I'M WITH YOU, I NEVER REALIZED THERE WERE RULES LOL. WHEN I JOINED THIS SITE I WAS COMPLETLY COMPUTER INEPT. I FEEL FOR THOSE WHO HAVE A DIFFICULT TIME WITH EYESIGHT AND UNDERSTAND THE USE OF CAPS IN THAT WAY, NEVER ONCE CONSIDERED IT SCREAMING.
AGAIN BANFF CONGRATS, FINGERS CROSSED IT CONTINUES TO HELP!
SMILES N HUGS....COLINA
BERNARD,
I AM SO DISAPPOINTED. YOU ARE A MAN OF INTELLIGENCE AND HAVE USED THAT INTELLIGENCE IN A NEGATIVE WAY. YOU KNEW WHEN POSTING AND CHOOSING THE TERM 'REPUGNANT' THAT IT WOULD CREATE A REACTION...YET YOU DID ANYWAY.
I BELIEVE WITH ALL THE RESEARCH YOU HAVE DONE THAT YOU KNOW THERE ARE DIFFERENT LEVELS OF SEIZURES. THERE ARE MANY DIFFERENT TYPES OF TREATMENTS - ALL WITH SIDE EFFECTS AND LACKING IN AREAS NEEDED FOR SEIZURES. DIFFERANT TREATMENTS WORK FOR DIFFERENT PEOPLE AND YET THERE ARE THOSE WITH SEIZURES THAT NONE WORK FOR. STATISTICS RECORD THE MAJORITY, NOT THE MINORITY.
MEANING THOSE WITH INTRACTABLE SEIZURES NEED HELP AND HOPE TOO. DEVICES SUCH AS THE VNS GIVE THIS AND WHILE NOT BEING AN OVERALL CURE, IT CAN REDUCE THE NUMBER OF SEIZURES IN A DAYS TIME.
THIS HAS BEEN SHOWN OVER AND AGAIN ON THIS FORUM REGARDING THE VNS. BUT TO EXPECT IT TO WORK FOR EVERYONE WOULD BE LIKE PUTTING EVERYONE ON MY MEDICATION AND EXPECTING IT TO WORK FOR THEM. IT'S A GIVEN THAT THIS IS NOT FEASIBLE.
IT IS A PERSONAL AND PAINFULLY THOUGHT OUT DECISION ON ANY TYPE OF TREATMENT WE CHOOSE. WHILE ALL ASPECTS NEED TO BE POINTED OUT TO MAKE A WELL ROUNDED DECISION, TERMS SUCH AS 'REPUGNANT' THROWS IT OFF KILTER. WHILE THE TERM ALSO MEANS 'CONTRARY'...THE POPULAR AND FIRST THOUGHT OF DEFINITION IS 'DISGUSTING'. YOUR CHOICE OF REPUGNANT WAS REDUNDANT AND THE WHOLE MEANS OF EVIDENTLY CREATING THE MOST RECENT MEANS OF HUMOR AND AMUSEMENT FOR YOUR SITE.
AGAIN, I AM DISAPPOINTED. TO GO READ A SITE SET UP BY A SPOUSE OF SOMEONE WITH E AND TO READ SUCH POSTS. TO GO TO A SITE REPEATEDLY POSTED ON HERE AND TO FIND OUR OPINIONS ARE FORMS OF AMUSEMENT IS UNSETTLING AND HURTFUL.
HAVE A GOOD DAY BERNARD, YOUR SITE JUST MADE MINE...
-SPIZ
- I TYPE IN CAPS FOR THE VISUALLY IMPAIRED -
~We all matter, even when we haven't the slightest clue why~
BERNARD, I KNOW YOUR STATEMENT ABOVE WAS DIRECTED AT BANFF. HOWEVER I DID CHECK OUT YOUR SITE WHEN YOU POSTED YOUR FIRST BLOG. IT WAS NOT WORTH LOOKING AT THE FIRST TIME, SO I CERTAINLY DID NOT BOTHER THE SECOND. I ALSO DISMISSED YOU AS SOMEONE WHO DIDN'T KNOW ANYTHING ABOUT EPILEPSY AND NOT A PERSON I WOULD TAKE SERIOUSLY. YOU NEED TO BE EDUCATED ABOUT EPILEPSY, AND NOT BE SO ADAMANT ABOUT WHAT YOU THINK YOU KNOW. THAT IS VERY DESTRUCTIVE BEHAVIOR, AND DANGEROUS FOR PEOPLE WHO READ WHAT YOU ARE SAYING. HAD I KNOWN THAT YOU WERE THE ONE BANFF WAS QUOTING, MY RESPONSE WOULD HAVE BEEN COMPLETELY DIFFERENT. I WONDER WHAT MAKES YOU SUCH AN ANGRY PERSON? GOD HELP YOU, LORD KNOWS NO ONE HERE CAN GET THRU TO YOU. GOD BLESS YOU AND HELP YOU TO NOT MAKE BLUNDEROUS STATEMENTS THAT ARE HARMFUL TO PEOPLE WITH E.
SYL, I THINK WE JUST HAVE TO IGNORE PEOPLE LIKE THAT. OR MAYBE THINK THAT THEY ARE POSTICTAL, HAVING A BAD DAY, OR MAYBE JUST HAVE A BAD ATTITUDE. HANDLE WITH PRAYER SYL. ALL LIFE IS FRAGILE, AND IT IS HARDEST TO FORGIVE AND PRAY FOR THOSE WHO SEEM TO BE AGAINST US, OR DO NOT SUPPORT US. LET GO AND LET GOD, SYL, THAT IS ALL WE CAN DO. THAT MAY NOT BE WHAT YOU WANT TO HEAR, BUT LETTING SOMEONE LIKE THAT CAUSE YOU GRIEF JUST ISN'T WORTH YOUR TIME. HEART TO HEART, JAN
JAN, NOT POSTICAL, DOESNT EVEN HAVE E. JUST A PERSON WHO IS ALWAYS HAVING A BAD DAY,JUST READ HIS COMMENT. I DONT LIKE IT WHEN SOME ONE MAKES A CRACK AT ME FOR USING THE FORUM TO GATHER PEOPLES OPINIONS WHEN THATS WHAT THE FORUM IS ABOUT, SO IF I AM REPUGNANT FOR DOING SO, HE IS CALLING EVERYONE REPUGNANT. NO HE IS NOT WORTH IT. HE IS A NOBODY WITH OPINIONS THAT ARENT WORTH THE PAPER THEY ARE WRITEN ON. YES YOU ARE RIGHT, HE NEEDS LOTS OF PRAYERS. LOVE YA JAN
God Bless,
banffgirl
life is fragile, handle with prayer.
HI SYL, HAD I KNOW...............BUT STILL, HE TOO IS A CHILD OF GOD.............AND YOU ARE RIGHT TO NOT IGNORE THE INFORMATION HE IS PUTTING OUT THERE. HAVING E. IS DIFFICULT ENOUGH. HAVING SOMEONE LIKE BERNARD, WHO IS NOT EDUCATED ABOUT E., MAKING COMMENTS LIKE THE ABOVE, IS BOUND TO CAUSE A LOT OF UNEDUCATED PEOPLE CONFUSION AND FEAR. BERNARD IS ONE OF THOSE PEOPLE WHO NEED OUR SPECIAL PRAYERS, FOR HE IS LOST AND DOESN'T EVEN REALIZE IT. HEART TO HEART SYL, JAN
Hugs Sylvia ~ How awful that person was to have made such a comment like that.When someone has a question for another person that maybe had or is having surgery,change in meds,or having depression etc. I thought we all are here to help each other.I have made some very good friends on here,as you being one of them.I am not sure where I would be if it wasn't for everyone on here to help me through my problems.It is hard to forgive someone like that.It shows that he must not have alot of feelings for others.How else do we learn but from others that have experienced it.He has shown his attitude as being very poor and some adjustments need to be made.Sylvia,just go on with your life and do not let his ignorance upset you.Ya know that I care and many others do also.May God bless you always....HUGS
*Peace I leave with you; my peace I give to you.I do not give to you as the world gives.Do not let your hearts be troubled,and do not let them be afraid.* ~John 14:27
thank you maggie! that is exactly what the epilepsy forum is for. we are here to help each other and that is what we do. we also make great friends as we have done with each other. his comment above shows his distain here, so why does he bother to post when he doesnt have epilepsy and doesnt like our forum? i cant help but pity this person and his lack of understanding of how a forum works. i pray one day he will find real knowledge instead of using his bias ideas, false info that he posts on a website he created himself. God is all knowing, do not glorify your self above the Lord.
God Bless you all as God guides us through all decisions we make throughout our lifes,
banffgirl
life is fragile, handle with prayer.
If I had known it was Bernard, I would have simply pointed out that his behavior is not welcome in this type of forum. I also have encountered his attitude on the other site.
Then again there is this story. A Buddhist monk who had been imprisioned by the Chinese for almost 20 years was finally freed and made his way to northern India where the Dalai Lama has lived since leaving Tibet. When the Dalai Lama met with this monk many years later he related that: "He seemed the same. His mind still sharp after so many years in prison. He was still the same gentle monk.....They tortured him many times in prison. I asked him whether he was ever afraid.......told me 'Yes, there was one thing I was afraid of. I was afraid I may lose compassion for the Chinese.' ......Forgiveness helped him in prison."(1)
Enough said.
(1) excerpt from "Train your Mind, Change your Brain," Sharon Begley (c) 2007 by Mind and Life Institute
Just to add banfgirl and all I find the forum really useful. I use this instead of the english ones (Im from the Uk). When ever I am considering new meds, or other matters or am concerned I look on here for advice and to share experiences - who else can you ask??? Best wishes Bex
You know, I just happened by here today, looking for information. I ususally don't frequent this epilepsy forum, but I use another one, in large part because Bernard is here. Bernard criticizing people with e about their knowledge or their attitudes is a lot like a man (who's not an OB) telling a woman in labor to suck it up. He doesn't know what he's talking about.
OP, please don't let him hurt your feelings. He's arrogant, that's all. You don't have to put up with that. Of course you have every right to come onto the internet and talk to other people with E about meds and things. I think it's wonderful. I don't know what I did for most of my life, when I felt as if I were the only person with E.
Try not to let it bother you.
spaced which other forums do you use??
I actually waited 24 hours before replying.
My son is on his 2nd VNS, without it he would probably go status or worse SUDEP.
I am also an ambassador to the Cyberonics for parents.
On that website I was lumped into a group of people that they accused of telling ONLY the good side of the VNS therapy. I don't. I tell parents that they need to know more than the doctors, I tell the parents about the diets, other meds and other therapies out there. I tell the truth, and if I think that the VNS is possibly not a good match then I say so. AND I have!
My son has very hard to control seizures! VNS was not shoved down my throat, it was presented to me and then they let me check it out and my hubby and I searched and researched for over a year to decide.
My son also went through the modified Atkins' Diet and failed, but I don't bash that, same with the Keto I still suggest it.
One way of therapy is not the only way, suggestions are welcome, demanding does not help in any way.
Remember what is good for one person may be deadly for another...
~~~~~~~~~~~~~
Missy, mom to Kevin
10 Years old,
Doose or MAE Myoclonic Astatic Epilepsy
first VNS July 2002
second Nov. 2005
missy, i also troed the modified and nonmodified atkins diets as sudjested by my docs over the last 5 years. niether made any difference at all. as you know, i tried ever combo of meds as well
vns was sudjested to me in october 07 so i did research and talk to a lot of people that i knew had them as well as did a posting here on a forum. talk extensively to my doc about all the info i gathered. then talked to the actual neurosurgeon before actually saying lets setup a date. so no i did make the desision ligtly either. i think it would be a much harder deicision to make if it was for my child like you had to make than for my self.
i agree everyone is different, i have always said so. everyone reacts to meds differently. it would have been great to find a combo of meds that worked but it wasnt meant to be. i feel blessed as i am sure you do that the vns is working.
God Bless,
banffgirl
life is fragile, handle with prayer.