VNS Message Board

VNS DISCUSSIONS => Step by step Epilepsy => Topic started by: nitarita34 on May 24, 2004, 03:00:07 PM

Title: My VNS experience is over
Post by: nitarita34 on May 24, 2004, 03:00:07 PM
Hi all, I am still alive and kicking. Spent last week going through drug withdraw after over a month on pain meds that my liver just could no longer handle and a depression that is taking me down deep but I am fighting all the way. I have a question though. I am still not turned on but am VERY concerned about something (as one would be after my mess that I have been through), I have a headache in the same postiton that will not go away with ibuprophin, acetomenophin, or Alieve. I refuse to go on anything heavier after a week of hell with drug withdraw from the barbituates that my body has been on for over a month and sent me in a terrible downward spiral and into the ER let alone locked in a dark bedroom for four days of sweats, passing out, and vomiting. Yes this has not ended. My biggest concern right now is the terrible pain in what I take to be th vagus nerve area and the fact that my swallowing seems to be affected let alone the pain. Is this normal?? Again I am still not even on yet and still do not know at this point if surgery 3 will have worked for the unit is still visiting all over my body as it pleases. Yes it is loose again. I have pointed this pain out to my neuro, my sergeon and the ER doctors but all were concerned about other problems at the time. I am concerned about the vagus nerve at this point. I am very uncomfortable WITHOUT unit activation but no one can seem to answer any of my problems in regards to this. I know I sound like a hypocondriac (sp?) but I have had 3 surgeries in 1 month, a visit to the ER for drug withdraw and have had 2 more meds added to handle depression. Chemically I am a mess. I have just resigned from work, I can no longer handle the stressful job that was required of me and have returned to disability along with some part time freelance graphic work to help supplement the minimal income.  Along with the medical bills that are now pilling in for 3 surgeries(sheesh 33K a pop and medicare is leaving me with a 2000 balance to be paid for all three not including the doctors charges and the anistesiologist) and trying to figure out which I am truly liable for and not. But again back to my main question and away from my whiny complaints (yes I am ready for this thing to be out of me even before it is turned on). Is neck pain and headaches a norm. Neck pains being in the area of the Vagus Nerve and the headaches in an isolated place behind my temples (which ER told me is possible from drug withdraw-gee partying in my early years was not as hard as what I have just gone through). I cannot seem to get an answer from anyone and at this point all that ANYONE is concerned with is to get the unit turned on "for it will benifit me so much". OK I am going to tell you by this point I AM SCARED not just for getting it turned on but for my current health. Due to all that has gone on, I have missed my daughters birthday due to drug withdraw, my daughters Presidential Award for Academic acheivement and feel at this point as a total failure in life. Then to top it off made the mistake of watching YA YA Sisterhood and am now worried about how much MY children are going to have to pay for therapy to get through all that they have had to face with me. Yes I am down. Past the suicidal of last week and trying to move forward and searching for support right now. BUT AGAIN, I am concerned about the pain WITHOUT the unit being turned on and am wanting to know if this is normal and if not, what the heck to tell my neuro so that he gets what I am saying. I am scarred from hear to high heaven and have so many lumps and bumps in my chest even my neuro cannot figure out what is scar tissue and what is the unit. JOY. I go again in a week and a half if I am ready to deal with this again for possible activation or to be let known that #3 was a failure. I just need advise at this point and other persons delimas so that I will know if I am normal or having more problems. Along with the neck pains are pains in what seems to be my eustaion tubes or around my ears. HELP please, any info or other instances with be of great assistance. Thanks to all my "cyber" friends on here and I would love to see us one day possibly set a place and a time to come together as one for support in real life.
Herb, a special note to you and Joyce, may God look over you both. The only reason that I am not hospitalized at this point is that I have no one to take care of my children and am fighting it as much as I can to stay out of where I know I really need to be (how do you explain that to two children that do not have a father around to turn to for support and help).
Meds have increased to 400mg dialntin a day, 60mg paxil a day, klonpin to 1 mg twice a day and limictal to 200 mg twice a day, along with high doses of vitamin B complex and Folic Acid, let alone the NON-NARCOTIC pain meds for the headaches.
I guess I am pleading at this point for I am lost, alone and scared of any further progress with this unit, for help, support and guidance.
May God keep me in the right mind to function as best as possible on a daily basis and not destroy my childrens lives.

Title: My VNS experience is over
Post by: howdydave on May 24, 2004, 07:28:28 PM
Howdy Anita!

A headache in one spot that won't go away...

I would be very concerned about that myself - especially if I had just had surgery in the neck region!

I would strongly suggest that you light a fire under your surgeon immediately if not sooner!

Title: My VNS experience is over
Post by: Birdbomb on May 25, 2004, 05:17:21 AM

I agree with Dave,  considering all you have been through, the nerve sounds very inflamed.  The headache and neck pain could be a number of things, meds, migrane, even a bad reaction to the VNS.  Could be your body is rejecting it.  Didn't you tell me you had a reaction to titanium?
I'll call you when I get off from work today


Title: My VNS experience is over
Post by: nitarita34 on May 27, 2004, 03:31:03 PM
My seurgon knows NOTHING about the unti besides implant, my neuor knows nothing about the unit besides activation. I AM LOST and do not know who or what sort of Dr to go to. My seuron is beoynd dealing with me, I have become a thorn in his side and something tells me that after all of this Cyberonics has pulled him from the list of surgeons. The only other doctor that will mess with me is the surgeon that did my brain tumor removal back in 95 which #1 left me with epilepsy and number two was never around to be found as my body cratered from lack of sodium and I almost died with that one in ICU. I  do not think he is a good choice to turn to. NO ONE WANTS TO MESS WITH ME. In all honesty I have given up on Cyberonics for all they do is try and sent me back to the ENT that did the surgery or to the other Neuro that I do not want to mess with. I thought the headaches were from drug withdraw but I feel that after a week they should have subsided or at least be able to be controled by OTC medication, even in high doses of Ibuprofin and alternating that ever 2 hours with Acetomeniphin. I just want this thing out at this point. It has made a mess out of my life for over a month and now Medicare is saying that they will not cover the removal. And yes I have metal allergies, sever in fact. Excuse the graphic of this but I had a CLEAN nipple piercing done, not immediately but after about 3 months I started having sever pain and problems, went to the GYN, found ou that I had a sever infection. Spent two weeks in the hospital, a surgery to open me up for they though I was in advance stages of breast cancer, which I wasnt and then sent hom ewith a central line into my heart for a home health care nurse to come to my house twice a day and administer strong doses of antibiodics. The pircing ws done with titanium. I have told both of my doctors that and they are both blowing it off. I understand with the generator unit for it is incased in plastic but am unsure of the leed wires and what they consist of. I am at a loss for help. NO ONE wants to touch me. I can no longer sleep on the left side due to the pain and am just truly miserable. Is and Atty my only alternative at this point in in reality, where is that realy going to get me for then NO ONE will even come near me. SUGESSTIONS PLEASE, Surgeon doesnt want to deal with me anymore.................HELP!!!!!

Title: My VNS experience is over
Post by: howdydave on May 27, 2004, 03:33:16 PM
Howdy Anita!

I was thinking along the line of "blood clots" and things like that.

Title: My VNS experience is over
Post by: nitarita34 on May 27, 2004, 03:46:40 PM
But Dave, when I have a Dr that doesnt want to mess with me where do i turn????? No other surgeon wants to get involved. I am in a BIG mess until I end up back in the ER

Title: My VNS experience is over
Post by: howdydave on May 28, 2004, 01:37:37 PM
But Dave, when I have a Dr that doesnt want to mess with me where do i turn????? No other surgeon wants to get involved. I am in a BIG mess until I end up back in the ER

In a situation like that I would contact the head of the surgery department.


Just make sure that your questions and concerns somehow go on the record someplace!

That way if (God forbid) anything should happen, there is proof that you brought your concerns to somebody and nothing was done about it.

In this case, it could be as simple as sending a registered letter to the head of the surgery department. You will then have hard evidence (a receipt) proving that you wrote them a letter and that it was received by their office on such-and-such a date.

In my personal experience, registered letters get prompt attention!

In any medical or business situation, if you can't get satisfaction from the person you're talking to, work your way up the administrative ladder until you get somebody to listen.

It's basically just the old "OK... let me talk to your boss!" approach.

For any/everybody else who is reading this thread here are some alternatives when you're stuck in an "I can't get anybody to listen" situation.

Another thing that you can do is search out an advocate program.
Does the hospital have an ombudsman's office?
Does the local EFA have an advocate program?
How about the local legal aid society?
How about the AMA (American Medical Ass'n.)?

When all else fails, there's always the State Surgeon General's or the State Attorney General's office!

These alternatives may not all be applicable in all cases.

Title: My VNS experience is over
Post by: nitarita34 on May 31, 2004, 12:15:54 PM
Off to the neuor tomorrow to hopefully get this figured out with the neck and go forward. He seems to be my advocate here more than any that I have found and he is deeply dissapointed in all that has gone on with me and the way that things have taken place. The depression is subsiding, thank goodness for more meds I guess. I took on my own form of therapy this weekend and went to a friends house and did all their yard work. That was so relaxing for me. I live in an appt and miss having that to do. Defeniately helped clear the brains of some cobwebs. After tomorrow all complaints will begin being filed. I have waited to this point to make sure that I have someone to still look after me and if this Neuro won't do what is needed I have the names of the head of the depts at Methodist Hospital here in Houston and their numbers (had a client at work that works for them-lucky me). I know my neuro is keen to get this unit turned on tomorrow but I refuse until the pain questions are answered and resolved, this trip has been too long and hard as it is. The surgeon that did the surgery is olso a professor here at one of the "prestigeuos" schools of medical education and he has already been reported. I start my new job this week which will cut my hours back to 3 to 5 a day and give me the opportunity to take care of all this health and possible legal stuff now withouth having the "guilt" put over my head about having to take off. Just kind of an FYI and a good feeling for me, the company I am going to work for is Halo Graphics, and when my new boss called me to confim things she told me not to worry that now I am a living angel. :rolleyes: . That was needed. Herb you and Joyce are still greatly on my mind. They tried to put me in but I just counlnd't do it with having the two girls and an Ex that would use whatever means he could to take them from me so it has just been a tough battle and many boxes of tissues and counting ABC's over and over (found that to empty the brain). I can so relate to Joyce for the terrible deamon thoughts remain but I have to say that if it wasn't for having two girls around then it would trully be time to worry. I could never leave them with that guilt and wonder, life has been hell enough for them. Thank you for the links for they will all be prossued and what needs to be done at this point will, especially the fact that the stupid dr is trying to even bill me for his in office operation that the stupid fool did. I think Cyberonics set up a protocol for implantation for a reason and these drs that think they know better need to wake up. The generator itself seems to be in a safe place now, it is stuck underneath all the scar tissue that was created from surgery 2 and 3 and I do no think it can get past it for it's lump is bigger than the unit itself. Keeping fingers crossed and hoping that my neuro will continue with his consideration and helpfulness throughout all of this, if not, I have a list of 3 new ones and one being a hemotologist if need be. MOVING FORWARD WITH A HALF SMILE ON MY FACE...................MY BLESSINGS TO ALL :wub:
By the way dave, this guy is the head of the surgery dept.---JUST MY LUCK

Title: My VNS experience is over
Post by: howdydave on May 31, 2004, 08:07:44 PM
Howdy Anita!

If your neuro is that keen to get things started, holding your ground and not letting them turn it on until all of your issues are addressed should get some action on his part.

To anybody else who might find themselves in a similar situation:

If your problem is with a department head, you can always call the hospital's administrative office to find out who is above that person in the chain of command.

When addressing problems, always send a letter to the person with whom you are having the difficulty and send a copy of the letter to their boss.


Title: My VNS experience is over
Post by: Herb on June 01, 2004, 06:30:17 PM
Dear Anita,

I apologize for not responding sooner to some of your posts.  I am truly sorry you have encountered all these obstacles and you have yet to activate the prostheses.  We all have challenges only some have more than others and some are stronger than they give themselves credit for.  Certainly, whether you realize it or accept it you are one of those individuals who has been challenged and placed back against the wall.  Yet, when I read your messages there obviously is a source of strength within you that keeps burning and maintains your will to succeed.

I can only encourage you to do as you are doing.  Enlist the support from whatever sources are available.  Just please do not give up.  As you mentioned there are two children who need their mother.  One does not want to leave a legacy to one

Title: My VNS experience is over
Post by: nitarita34 on June 03, 2004, 01:25:24 AM
I am able to finally post positivly to the board. No blood clots in the neck area, just a long time for recovery from surgery according to the hemotologist that I saw. The other, I say this with fingers crossed, is that I AM ON. The unit was activated yesterday. Lowest setting and back to the neuro in two weeks for adjustments. I understand his anxiounous in wanting to get in turned on after a long discussion with him. He saw how my illness was taking over my life again and the fact that the medications were financially draining me let alone the continual increase and adding of new. I know that won't go away for a while if ever, but he wants me to have this opportunity to try instead of a continual increase in meds. I will reamin on all of my meds at the increased dose for now. The depression is still a battle but I have relieved myself of some of the things that were destroying me. One being my employment, though I will now be freelancing graphic work but on a partime basis and not have the stress that I was incurring. I am back on full disability since I will be earning a minimal income but have done this so that I can regain control of my health once again and that will not happen overnight for I know where I have let myself get to. I also have made peace with my mother (if you remember the first post she was so against this and didn't want to be of support after all started going wrong). It is nice to have her back as a support system in my life again. As the depression is subsiding I am become active again and leaving the house for more than just going to work (I had no choice on that one though I was only making it one or two days a week) and visiting friends and getting my children active in summer activities. You know with the depression battle, as hard as it gets and as terrible as every time is, I learn every time new coping mechanisms once I get through the first few days of not being able to do anything or talk to anyone. My seizures have been at a minimal, probibly cuz the meds are so high now but am glad that I am not fighting with them at this moment.
Herb, you and Joyce are inspiration to me. My prayers are with Joyce always for I know the deamons that she battles. In church they talk about going to hell, in a full blown depression you are in hell, there is no other better description for it. I am glad to hear that she is back on the upward of it, I know the hill she has to climb is steep as can be but after getting to know you and of her on here I have faith that this too she will overcome. And yes she has been totally blessed to be free of the deamons for 3 years. I hope and pray that another 3 years are to follow.
Howdydave, I still haven't decided how far or if I want to mess with this doctor. It is overwith. I am activated and all of my energy was taken out on this that I am truly not sure if I have the energy for a legal battle. I have filled complaints with the medical board and Cyberonics knows of what has gone on and I hope that they take it in their best interest to trully consider using this physician for implantation again.
To all the new members on here, take my story as a lesson on what to find out to begin with. Do not take it as a reason NOT to be implanted. If you read through the board you will find many many positive stories and sucesses. My begining failure was on the surgical level not on the device level. As I said in the begining. I am ON and am hoping to be able to post continual success. To me right now the greatest sucess was to get activated. From here we will see. Once in a while I can feel a little tingle that the unit has come on but other than that I have had no complications in the past 24 hours. When he started to set me we found what was too high for sure (lordy I thought I had a chicken bone stuck in my throat hehehhe) and we backed down from there. I do not know the exact settings, at this point it is sensless for I am not at a level that is fully functional. Next appointment I will get that info and keep record of it.
Birdbomb, keep up the great job you have done running this board and thank you again for all your support, advise and comfort. Please always continue to extend that to those in need here for you have a tremendous gift for it. And I do hope your health is improving.
My prayers and happiness to all,

Title: My VNS experience is over
Post by: nitarita34 on September 24, 2004, 11:29:32 AM
Ok, I thought all was going smooth for this. Told myself there was no way the removal could be as chaotic as the implant. Yes I have had to reschedule the removal surgery 3 times, but ..........................till I go the phone call this afternoon. Surgeon is no longer doing suergey and might no longer be in practice. No I am not joking. He has ended up with a terrible injury and is going through surgery himself next week and no one knows if he will even be returning to his ENT practice, let alone surgery. Ok, I stay calm talking to the nurse, asking "ok, well um who can you refer me to", no luck she knows of no one to do it. Just my luck. So call my neuro, he says "call Cyberonics", I convince HIM to call them. I really don't want to hear a sales pitch of how I need to leave the unit in. OK guys, so now I am stuck, the only one I know of in town is the only one that would touch me on the implant mess and that is my ex neuro surgeon that caused the epilepsy with his brain surgery to begin with. I know it was a risk I took with the tumor removal but still would you really consider going back to someone that altered your life that much, let alone the stupid tumor he removed is back. I am at a loss, and no matter what I get to start all over with medical history, problems, blah blah blah. SO ANYWAY my happy dance has ended for now and the itching, swelling, headaches and all the other problems are determined to stay with me for a bit longer. You know, I really didn't think that this thing could have caused this much surgical chaos in my life. Anyone gotta knife and some peroxide, can't be too hard to remove this thing. HA HA
Anita :Violent:  :Really Mad:  :Tantrum:  :wacko:  :blink:  

Title: My VNS experience is over
Post by: Birdbomb on September 24, 2004, 11:46:29 AM
If I want to find you, I'll just look for the little black cloud hanging over your head! :So Sad:  

Title: My VNS experience is over
Post by: nitarita34 on September 25, 2004, 02:26:46 AM
I am still a happy person, just aggrivated as all can be. It would have been different if I got the "Doctor has had to reschedule" but I go the "doctor is not doing any surgeries". I am not sure what to do about finding another doctor at this point. There is a peidiactric ENT that is the one that worked iwth my ENT on trianing and the doctors nurse is going to see if he will take me on a special case basis. But I am now nervous again because I had enough problems with my body with implant. My neuro is working on it too because he has realised that this stupid thing has to get out of my body and soon with the fact of the metal allergies and latex allergies and so unsure as to what the inside of me will look like. I had the brilliant concept (If i am repeating something i have already stated please forgive me, the brain just aint working right anymore) of piercing my breast (i don't know how to put that in politically correct terms). Anyway the piercing was a highly sterile enviornment, and titanium hoop (I knew I had problems with anything less but was guaranteed no problems with titanium). 6 months after the piercing i end up in the hospital with what they first thought as rapid progressive breast cancer(they were told of the piercing-it was still in when i went in the hospital) They threw me on an iv to make sure it wasn't just an infection and when that didn't do anything and blood work was comming back not showing signs of cancer they opened me up. Metal allergies.........what it does I have described before and when it gets going it is a mess and wont clear up. So after 2 weeks in patient and another 2 weeks at home with a central line into my heart for my iv medication and home health nurse visiting 2 or 3 times a me paranoid but the more those memories come back (brain only works half the time i promise) the more i am becoming afraid as to what is going on. i was excited about getting it out and getting my body healed. Neuro said that my problems might not be from the unit being turned on and running but might all be related to the implant itself and possible allergic problems. I just don't want some Joe Schmoe who doesn't know about this stuip thing heading into my neck to remove wires, the implant removal itself doesn't frighten me. They have enough incisions to choose from for re entery. OK done complaining. I am doing way too much of that lately.  My love to all!!!!!  :Censored:

Title: My VNS experience is over
Post by: nitarita34 on October 13, 2004, 01:15:46 AM
Good morning all. Just a quick report that surgery was 100% sucessful and with amazement (prayer I think) I was at the hospital from 630 am until I left at 1130 am in the same day WITH lead removal. Am I in pain? HECK YES. Am I relieved, HECK YES. Do I have problems from the lead removal? HECK NO. This surgery went amazing after all I had read about do not remove the leads. According to doctor, they got in there, tore through 3 surgeries of scar tissue in the chest th remove the generator. Then onto the neck. Cut through the scar tissue with gentleness and the leads, according to the doctor, "popped" off. As far as incisions, they went back through the large one at the base of my neck and superglued the buggar back together. Swelling of the body is gone. No wake up with a headache this morning (though pain meds could have fixed that one) and vision in right eye is not so blurry. Ok for those who are religious and for those who aren't, there was a whole lot of prayer that went into this surgery, weeks prior to it and not just from me. I will stand the ground on that one after all that had gone wrong previously. My children are happy to see me with a smile and up and about to some extent. There is the pain that is pretty much the same as the implantation itself, where you feel like your neck and chest are pulling together but I am up and around as much as I can be. MY LOVE TO ALL, and yes for those that need a doctor for lead removal send me an email, this guy is great and from old school and gentle and caring and PRETTY AWSOME to boot. May all that are have great results continue to be blessed and all that are having problems find the needed solutions that they seek. I promise not to leave you, my friends here, you just get to be blessed with not hearing me maon and compalin about my VNS problems but I am here for answers to questions of what I went through. My utmost thanks to the VNS board for giving me a place to cry, to scream, to seek support when I couldn't find it elsewhere, to find resources, and to find a big hug. We all have our own stories, that makes for an awsome world.
My love to all!!!
And peace be with you,
Anita :angel:  

Title: My VNS experience is over
Post by: Petunia on October 13, 2004, 07:17:31 AM
Oh Anita-
I am so happy for you!!! I just hope and pray that some day I can wake up without a headache, and my kids will get their mother back as well.   Yes, yes I want this guys name!!  Can you send it to me please.
Did you tell him that you were going to be sending others his way?  I just wish my guy here was willing to do it.  I love him, and trusted him more then once with my life. ( brain surgery twice in 1993) as well as my whole VNS deal.  
Anyways, again I'm so happy for you, keep us posted on your healing process.  

Title: My VNS experience is over
Post by: Birdbomb on October 13, 2004, 12:27:14 PM
Look at YOU!  All happy and feeling so much better!.  I am so glad things have gone easier this time and it was such a snap for your doctor.  Better keep an eye on him so his head doesn't out grow his halo.

I believe once word gets out of your sucessful explant, you may end up  with a lot more email.  But hey, it's only right to help others along the way.  You have been a trooper by allowing our readers to share in your experance, thank you, Anita.

Title: My VNS experience is over
Post by: nitarita34 on October 13, 2004, 01:06:29 PM
I have no problems with recomending him for explants and in all honesty, I would reccomend him for implants. He knows what he is doing and is fully upfront about pros and cons. Nice to finally have that and to not have to pull teeth or remember to write down 1000 questions. Birdbomb, thank you for giving me the venue to have somewhere to share my story and find support.
My love to all!!!
Anita :Thanx:  

Title: My VNS experience is over
Post by: Belinda on October 16, 2004, 04:13:48 AM
I do have a problem reccomending the VNS.
NowI'm having along with constanst sore throat tooth pain on a tooth I had a Root canal done.
I've just been through just to much with VNS and it hasn't done much for me.

Title: My VNS experience is over
Post by: Belinda on October 18, 2004, 09:22:49 AM
I know one woman who had to have surgery on her leeds.
They were all messed up.
She's ok now but they had to remove the old leeds I beve replace them with new ones.
She had a major surgewry because the leeads got messed up.

Title: My VNS experience is over
Post by: nitarita34 on October 18, 2004, 02:00:36 PM
Belinda I so understand about not wanting to recomend the VNS, I feel that way too at times but also do know that for some it has worked and worked wonders, but for those that it didn't, most of us ended up with a BIG mess. Catch 22 on this one. But for someone looking for a good surgeon, I will suggest him, for implant or explant. It is hard to find someone that you can trust to attack your body in the way that has to be done for this. Unfortunately I will disagree with Cyberonics on this being a simple surgery even for those that have had no problems. They made it out to be that I could head to work in a day or two after, I just do not see that possible for anyone having this done.
My luvs to ya!

Title: My VNS experience is over
Post by: Belinda on October 18, 2004, 11:03:43 PM
If the VNS works good for someone I'm happy for them.
Don't get me wrong If it works and your having no problems keep it by all means.
The person is lucky and thats great.