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nitarita34
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« on: April 02, 2004, 04:43:04 PM »

:unsure: My surgery date for a VNS implant is approaching for April 15th. I am truly unsure of doing this, though the option of medication reduction and a more normal way of life is sure a dream to have. In brief, I am epileptic (only 1 Grand Mal in life though-all partial seizures), Bi Polar, and approaching obesity. My neuro is jumping at the chance for me to have this done, but I am unsure if it is for my benifit or so that I can be his guinea pig study case, since he currently has no patients that he is moitoring with this device. I live in Houston and do have one of the best ENT's doing the implantation itself so am not worried abou the surgery but am concerned about all the negative and non-working unit stories that I have found about this device. The benifits seem very uplifiting. I am a single mother of 2 who was put on disability over 5 years ago (I also have a pituitary brain tumor that has re occured after removal in 95), I am trying to return to the workforce full blast and lead a normal life and set a good example for my children, let alone I have the need to support them for disability will not pay the bills. Life is a struggle with all the medication side effects, loss of memory and weight gain from all the medicine trials over the years (for bi polar more than for the epilepsy). As it is I have no time for any of the local support groups, meeting and such. Like I said I have hit the workforce full force and am now working 12 hour days and trying to parent(Almost like a permanet mania). I take dilantin, limactal, paxil, klonapin, and ambien (and am also suppose to be on zyprexa but cannot afford it). I AM EXHAUSTED. My biggest fear I guess with the surgery is that it will be more of a battle than anything and just be one more thing to wear me out, but it also could hold the key to a brighter tomorrow. I know no one can answer the choice to do this but myself, but any advice would be greatly appreciated, AND SOON. My mother is against it, but my mother is also a full blown homeopathic person (and a hypocondriac-sp?-to boot) and has sent me over the edge before with her "cure all" for depression and at her reccomendation and "all knowing" pulled me off my antidepressants to take herbal remedies before (that was a mess). There is no support from her in regards to this and I have no partner in my life to help support and weigh out this decision, so I am turning to those that have been through all of this on this message board. ALSO dear mother has heard somewhere about possible calcification on the vagus nerve around the connections(??) and is having a coniption about hearing that. I am looking forward to any and all responses be it positive and negative. I do wish all the best for what we do struggle with on a daily basis is so very hard. Thank you for your time, Anita
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
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« Reply #1 on: April 02, 2004, 05:07:34 PM »

Hi : I wish you the best of luck with your operation and total success with the vns. before my leeds broke I was one of those success stories, I never ever used the magnet and the vns inplant controlled my absence,absence clusters and grand mal szs. I need control of the absence and absnece clusters and than I have control of the grand mal. The inplant was my miracle and my meds were lowered too. But my Dr was too ambitious and tried to get me off all meds,the price I paid for his arrogance was broken leeds and getting them fix has been a huge debate which I have put off.

Wishing you the best of luck,with your operation and inplant!!!!

ps: I love alternative medical care, for med side effects, but not for my epilepsy.I will try alternative medical first for certain things . I have had huge success with accupunture, and herbs and vitmains. psst off the drs too.lol

best  wishes
positive person
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« Reply #2 on: April 02, 2004, 06:31:22 PM »

Anita,

    I will have you in my prayers.  I have been an epiletic for 40 years.  The neuro I have been seeing is the first one since I saw my first one back when I was in high school.

     Last July I had the VNS implant.  Gradualy I have been getting better.  As I was on dilantin (which he took me off of)  for so many years I hardly could remember things.  Now I am even remember drems I had at nights.   When I use to have a pet-maul, I would have to lay down and sleep for at least an hour.  Now I don't even have to lay down.  In fact I get hyper after one.  Usually I jump up and clean house.  :D

    My doctor is easing me off of my meds.  He only has me on Lamital & Keppra.  He has deceased them both by one pill per day.

     I am pleased with the VNS.  I didn't expect to stop having spells fast.  I have gone from about 10 to 4 a month, since the implant, they were all peti-mauls.

     I hope you have as much luck as I have.  I am lucky because I don't have to work because of the husband I have had for over 30 years.  When our kids were pre schooled I was working with a hospital who had a Head Nurse who never heal the fact I was an epileptic against me.

     My best suggestion to you is just to have patience with the VNS.  Hopefully you will have good luck.  If you would like to talk more let me know your email address.

     May God be with you.  



Darlene ;)
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Birdbomb
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« Reply #3 on: April 03, 2004, 02:39:59 AM »

Hey nitarita34

Welcome to the board.

There are a couple of things I'd like to point out.  It has to be YOUR choice, not your mother's or your doctors.  This will change your life but no one can tell you how until it is implanted.  Everyone's reactions are different.

Aside for the usual complications from surgery, the unit it self works fine, the biggest problems stem from the way the vagus nerve reacts to the unit.  For many the side effects are too much to bare, for others it's a breeze.

My situation with seizures are simular to yours, and I had good control with the VNS.  The longest I went seizure free was 33 days.  Postictal was next to nothing compared to the hours and days I must endure now.  However, the side effects drove me to turn it off, you can read the list under Birdbomb's plight.  Currently I am dealing with it being off and once again adjusting meds.  I wanted the VNS to work for me so I could finish my degree, but it just wasn't so.  And the saddest part is there is only one way to tell who it will be the most effective with.  Implantation.

Make this YOUR choice.  You got to want it 100% and be resonably sure of your decision.  Any surgery is a big step.

Good luck in what you decide, and keep us in formed.

Birdbomb  B)
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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!
jenn
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« Reply #4 on: April 03, 2004, 03:59:14 AM »

Hi,
For my son, we tried the VNS, w felt that it was an option and none of the meds worked for him.  Though we now have it turned off we do not regret trying it as it was an opton and like meds is could have worked.  But i fully agree with others, it has tobe your decision and from our post you are trying to do everything great for your kids and maybe this will be what works for you.
We wish you much luck and your hardest day may be the 15 of april as you wait for surgery, that was such a hard day for me,
jen
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Missyat
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« Reply #5 on: April 03, 2004, 04:45:20 AM »

My 6.5 year old has the implant.

I would not change a thing about it. He is the miracle child with the VNS.

With epilepsy we noticed at every corner of life, it would rear its ugly head, dash all dreams and slam us to the floor. So when hubby and I decided that the VNS was the next course, we set our hopes LOW. We didn't want to be "slammed" anymore.

OUR HOPES :

Seizure relief, not control but relief
Backing off "some" of the meds, Kevin was at top dosages we had no where to go, we had ran out of meds.

WHAT WE GOT:

Seizure control (182 days) within 2 months of turn on  :o
Weaned off of one med (Felbatol) totally.

Our other option for Kevin was the Corpus Collostomy (brain split). Kevin was only 5 years old  :( .... I am glad we chose the VNS, although now Kevin is having seizures... hmmmm 15 a day before implant = 1 a day now??? I still choose the VNS. I blame the seizures now on the neglectful neuro. We are now going to another neuro Kevin's first appointment is in June.
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howdydave
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« Reply #6 on: April 04, 2004, 04:23:40 AM »

Howdy Anita!

One thing that I must say here.

The VNS is not a miracle machine!

Don't treat your hopes as expectations.

It is designed to reduce seizures, not eleminate them
It is designed to be used with drugs, not to replace them.

The VNS works very well for a lot of people.
Hopefully you will be one of those for whom it does.

I went into this with a "Gee... wouldn't it be nice"
attitude.

Since the VNS hasn't done anything in my particular case, I wasn't devistated like I would have been if I expected a miracle machine'

My quantity or medication has not been reduced, MOF I think that it has increased a tad.

So... IMO the healthiest attitude that you can have is:

Hope for the best but don't bank on it!
« Last Edit: April 04, 2004, 04:28:57 AM by howdydave » Logged

Dave
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« Reply #7 on: April 04, 2004, 05:28:18 AM »

Hi: Dave is right the vns inplant is not guarenteed to work . When I accepted to go for the operation I was out of meds,I felt I had nothing to lose and everything to gain IF IT WORKED?
I looked at  the operation as just another try to stablize my life. The medications have caused me to be underweight,lose my hair, lose my nails and my periods, gave me anemia,made me aggresive ,loss of memory,irratated my intestines,plus the loss of sz control cause I couldn;t take the doses needed. So I figured I had nothing left to lose trying the vns inplant .Anything sounded better than another pill that would hurt my body.

So my attitude was I will try it not expecting much,I was lucky it did work for me . But it is best to be indifferent,its just another try at stablization and nothing in life is guarenteed. Going into the surgery with  indifference ,helps protect you from being let down if it doesn't work out.

Wishing you the best of luck with your surgery and vns inplant

positive person
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nitarita34
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« Reply #8 on: April 04, 2004, 01:38:44 PM »

My thanks goes to all that are replying and my prayers and hopes go to all that the VNS is working for and also to those that it hasn't and are still facing the medication juggle. I am going into this with a positive attitude and have decided to leave my mother out of it, even through surgery. I will have a friend coming in from out of town that is supportive and non judgemental. One question that I do have is recovery time from the surgery itself and limitations that occur and for how long. After going through brain surgery for the removal of the pituitary tumor, multiple other surgeries for this that and the other (I am a walking accident), this one seems to be a breeze, but I realy need to know recovery for driving and such for I am hoping to return to work in less than 3 days after the surgery. The ENT doing the surgery is unsure and so is my neuro. Again I am the first patient my neuro has had with the implant. And my ENT is only the deliverer of the device. I still feel at a loss and lacking in information with this thing though I have read everything I can. THANKS ALL!!!!!!!!!!!!!!! :blink:  
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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Lindsay
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« Reply #9 on: April 17, 2004, 09:56:10 AM »

Don't let the surgery scare you. I have the VNS and I can tell you that they will start it off slow. You will get a magnet. If you want to e-mail me my e-mail address is lbowmer@surewest.net. I had the surgery done in 2001.

If you want to know more about the Vagal Nerve Stimulation just type in Vagal Nerve Stimulation and it will tell you about it or just e-mail me and since I have the pages and I can send some pages. Lindsay Bowmer

If you need encouragement e-mail me and I will respond. I know it's scary but know the VNS can cause neausea.
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nitarita34
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« Reply #10 on: April 18, 2004, 10:15:30 AM »

:wacko:  Well it is in and I still look like I have been in a gang fight and the pain is still strong but my hopes are good and I pray that this will be an alternative that will work for me. Surgery took about three hours (not sure why so long), but one of the Cyberonics reps/RNs was in the OR with me (guess living in Houston has it's perks). Anyway, at least I can put a face with a phone voice and know who I am screaming at if things go wrong. Sleeping has been difficult for I get stiff and cannot move but I guess that is to be expected with surgery. I was going to try and return to work tomorrow but I think a half days are in store for me for the next few days. Do I need to worry about sleeping wrong and pulling the leads loose? (A question I should have asked before I left the hospital but I was so "doped" up I barely remember leaving). I will call tomorrow and set up my "big" day to have the system turned on. Thank you to all on here with your words of wisdom, hopes and prayers. Mine are returned to all of you. Whether it has worked for you or not, at least you can say that you tried something other than continually pumping our bodies full of meds that have side effects that almost equal the problem itself. I understand all the dangers and warnings that alot of you have posted on this message trail and on others but in the end my decision came based on the fact that I am a big enough danger to myself to not take the chance to give this a try. Another seizure and head contusion was my deciding point. Take care all and keep in touch..................Anita
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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nitarita34
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« Reply #11 on: April 19, 2004, 07:08:56 AM »

OK frustration is setting in. The unit has migrated to my neck. I can feel it there.  That explains the lack of movement and the pain with swallowing. I go back to the surgeon tomorrow and see what to do from here. I guess the pocket didn't hold. I do dread going under the knife again but if need be so be it. At this point I do have no choice. Anyone else had this problem in the begining? FRUSTRATED!!!!! and hurting...........Anita :wacko:  
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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jenn
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« Reply #12 on: April 20, 2004, 02:37:04 AM »

:( I'm sorry this is such a hard recovery and now having to go in again - oh my.
I was just wondering though, if you are being operated on again the chances of infection is so much greator, maybe they should start you on oral antibiotics that fight infection before the surgery to be on the safe side.  For different reason, my son had to be re-opened and because of infection ended up with  a cenral line and iv antibiotics for 8 weeksAan, I sure hope they get it figured out right away,
jen :wacko:
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« Reply #13 on: April 20, 2004, 03:52:17 AM »

I spoke to Anita last night.  She was very uncomfortable and sounds like complications are setting in.  There are some disturbing facts she relayed to me.
1. This is all "new" to her surgeon.  He his suppose to be the best ENT in the area.
2. When she called his office, the staff didn't know what to tell her to do.
3. The unit was implanted in through the incision on her neck, there is no other incision.
4. A cyberonic rep was in the operation room and observed the proceedure.

I think something is amiss here mainly in the implantation of the generator.  I had never heard of it going in through the neck incision, mainly to prevent the thing from expelling itself.

That thing was in her throat!  :wacko:

I will call her this afternoon when I get off work to check on her.



Birdbomb
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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 #14 on: April 20, 2004, 02:18:42 PM »

Hello Birdbomb,
Bless her heart! As if she didn't have enough to deal with already...  :(  
Please let her know I am praying for her and that I hope she gets things straightened out immediately. It makes me angry the Cyberonics rep that was supposely there in the operating room didn't supervise the implant. :angry:  He/she must have went to lunch as soon as she was put to sleep- or something! But even the doc should have known how to implant it before doing it! Oh...I could go on and on but I won't. My heart goes out to her and I cried when I read all this- I still am.
Thank you for keeping us updated and for calling her to make sure she is ok. I know it means a lot to her. Take care, Fay-Scott's Mom in Loganville, Georgia-USA
 
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« Reply #15 on: April 20, 2004, 07:22:10 PM »

Update;

I spoke to Anita again this evening at length and she is not doing well at all.   :(

The generator migrated up into her neck!  After a trip to the ER and many piles of BS...these"doctors" decieded to PUSH the unit back into place and hold it there with tape!!

I am agast to think this would even be tried.  

She lives in the Houston area and even several calls to Cyberonics could not produce another doctor to help her.

Please!!! Anyone in the Houston area, if you know a GOOD doctor she might be able to see for help, please sent her a Personal Message via this board.
No one should suffer like that.

Birdbomb
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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!
nitarita34
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« Reply #16 on: April 21, 2004, 06:24:54 AM »

Still alive and kicking here. Though at home again today. With the pushing/manipulating the unit back into place, it has made it so that I cannot move my neck again. Spoke to Cyberonics rep today, explained to her exactly where the thing is at. Her response "Ummmm doesn't sound like the correct location, BUT let me talk to my clinical people and to the Doctor and I will get back with you" That was 4 hours ago, still no word. My employer is angry for I am still out of work, for what I had told him was going to be a simple day procedure and I should have it done Thursday and be back at work by Monday with NO PROBLEM. Um yeah right. Asked Cyberonics rep about why I had an incision in my neck. Her response was "Well didn't you talk to your surgeon about that?" My response was no I really don't remember discussing that just the fact that he is a great microbiologist and that his paitients never get infection and that he did same something about only one incision. Though I have 2. One for the implant (about 6" on my neckline and looks like I have been in a gang fight or tried to commit suicide) and a smaller one below it for the leeds. No single incision here. Let alone, being the stupid one that I am feeling to be right now, it was my understanding that Cyberonics has set up the guidelines for implantation proceedure. She told me that she believes that it has been done this way one other time. And I though I was already a guinea pig to begin with.
Employer thinks I should just drive down to Cyberonics and have a talk with them and threaten law suit NOW. My theory on that is #1, are their facilities even accessible, #2 Is there anyone there that could help me, #3 Threaten law suit at this point and I will never get fixed. (Whimpy me told him I would go-though I cannot drive at this point-just to shut him up)
(Remember, I am not able to sleep at this point and am just getting stupider by the day).
OK guys the tape concept....THIS IS A JOKE. #1 I am allergic to the tape they have put on me, #2 They used some sort of adhesive under the tape to help hold it down. #3, I cannot get the stupid stuff off, #4 Nail polish remover wont work for the tape is on both of my incisions. (Trying to laugh at this at the moment as I am itching away)#5 the way the tape is placed, and this "concept", the tape has pulled the unit higher up.
In my conclusion of all of this-Cyberonics has given this surgeon a little too much Carte Blanche and I am left trying to get something done. Will I ever get this thing turned on?? At this point all I want is it out of me....but still willing to give it a try. Word of knowledge learned here CHOOSE YOUR OWN PHYSICIAN, I do not know why Cyberonics is so involved in this. I am trying to think of any other medication or implant where the company is making these decisions and not the patient and reccomending doctor.
Hanging in there by the seat of my pants.............
Anita :angry:  
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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Herb
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« Reply #17 on: April 21, 2004, 12:29:05 PM »

Dear Anita (nitarita34),

I am extremely sorry to be reading about the difficulties and stressful experiences and pain you are encountering after your surgery.  I can only express my hope that these issues are resolved and you start on your road to wellness quickly.

I am bothered and puzzled by some of the postings I am reading here and I am even more disturbed when a third or forth party tries to relate the experiences and facts of another.  Often times I read when one is under severe stress, inaccuracies and misleading statements of fact are expressed.  So for my own education and knowledge I would like to ask you some questions without intending to invade your privacy but for the benefit of all to read.

I am curious when you referred to your doctor as
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Herb
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« Reply #18 on: April 21, 2004, 12:36:31 PM »

Anita,

I omitted to ask in my previous posting whether you had discussed with the practitioner exactly what he was going to do to you during the procedure.  Did you ever discuss the number of incisions and their locations?

Thanks for taking the time to consider these questions and responding.

.

 
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« Reply #19 on: April 21, 2004, 12:39:47 PM »

Me back again. Finally exhaustion took over and I was able to get some sleep on and off this afternoon and am feeling better and more optimistic. Spoke with Cyberonics this afternoon. Said to leave the tape on. (Did get it off along with some skin, have bandaged that up and retaped) What the hey. They are looking into the surgical approach used and unsure as to if it will be reccomended and will discuss it further with the surgeon. Cyberonics was pumped to get me healed and get the unit turned on. Basically no more help than where I started at this morning. Reccomended contacting physician for stronger pain meds (Not going to do that-not into the pain but not into the stupidness that comes along with pain meds). Basically the concept that is being sold to me "get the thing into the pocket, tape it there to hold it and get the scar tissue to form around it". Makes sense but still not working, but I have no battle with the physician if I do not do what is reccomended. I do understand the hessitance of re entering the site due to increased chance of infection let alone surgery again. Go back Tuesday to him for final decision as to leave it where it is and turn it on or move it, though I am uncomfortable with it hitting my collar bone and neck. Still lost with this and all but got to remain optimistic. Depression is taking over and that is another battle that I really do not want to fight right now. I am sorry if I seem long winded, I have no where to voice myself and frustration but here. Thanks to birdbomb for this site and thanks to all for support and words of wisdom.  
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
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« Reply #20 on: April 22, 2004, 12:22:08 PM »

Herb,
As for the surgeon himself, he is an ENT that Cyberonics sent me to. My neurologist reccomended this proceedure that he had recently been to a seminar on. Gave me a pack of information from Cyberonics and told me to call him if I was interested. I will be my neuros first VNS impalnt patient. I am still unsure as to why an ENT was the one chosen to handle this and not a Neuro Surgeon. As far as the ENT, I believe, if I remember correctly, I am his 5th (but he empasised that one of his partners had done over 20 and he had observed many of them) and this implant method that he used is something new he came up with. When discussed with him, the main thing that was brought up was one incision and his total care to keep me infection free from his microbiology background. As far as the Cyberonics rep, I really do not know if she is an RN or a tech. I didn't expect her in the OR but prior to being put under I was introduced to her in a brief moment, but did not see her upon awakening and have not spoken to her again until yeterday, when total frustration had set in. I am VERY uncomfortable. The unit is at my neck and on my collarbone and jabs itself into the collar bone with the wrong movement. As far as incisions, I still ended up with 2. Which is why I am now questioning why one so large and promenent at the base of my neck and one below it. Herb I remain positive.  I go into a physician with trust for I hope they have the correct knowledge needed. ESPECIALLY if the manufacturer of the device is the one who chose the surgeon. My frustration lies in the pain and utmost discomfort and inability to sleep. I still look at this as an alternative to my Bi polar and Epilepsy and remain positive but frustrated. I have no where to vent but here. Unfortunately I have no support group and even though I am Bi polar I as of current have no Therapist for the main fact that with returning to the workforce and as it is having the Dr's appointments that I HAVE to go to, all this time that I take off is causing me problems at work and a frustrated boss. I questioned the ENT as to why HE was doing this proceedure instead of a neuro and his response was that he was more qualified to do it with it being the neck area and not the spine or brain. Made sense to me. One thing I did ask the Cyberonics rep way before surgery was "would I feel the unit". I was assured that I would never know it was there. Well, it is there and not in the right place. I have days of feeling that I am just being a whimp and that I need to stick with the motto of "with pain comes gain", but I trully do not feel right and to turn my neck is painful for it puts the unit into my collarbone or neck depending upon the direction that I turn. To sleep is a nightmare. I am a side sleeper, I understand that I cannot sleep on my left side but to sleep on my right, when I put my arm under my head it pushes the unit again into my collarbone making sleep something that only comes now from sheer exhaustion. My surgeon and the resident that is under him told me to sleep upright or in a recliner. I have tried that and fell onto my left side and awoke with major pain and I do not own a recliner. I think I hopped on the bandwagon too quickly with this and let the company make decisions for me that I should have taken into my own hands. This is far from the first surgery I have had in my life, I think this is #12, all else for other problems, but I was lax in this one. I really like my neurologist and he has been nothing but positive for me (has gotten me off of alot of meds that I didn't need to be on) and I trusted his reccomendation for this device. I still trust that this will be a good alternative and look forward to getting it turned on and going forward. Just have to get through all the problems that I am going through with the unit placement. If you want to know anything else, please do not hessitate to drop me a line. I am so glad that your wife has found the unit to work with her depression for that is my hope is to overcome the depression with the epilepsy. MY seizures are short term, though a pain, but my depression is dibilitating PERIOD. I have been hospitalized for it in the past and hope to never have to be again. Thank you.............
Anita  
 
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« Reply #21 on: April 22, 2004, 09:43:39 PM »

Dear Anita,

Thanks for taking my suggestion and placing your private E-mail response to me on the message forum for all to read and to share your experiences.

I wish I could find my private reply to you but for some reason it is lost to me in Cyberspace or maybe
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« Reply #22 on: April 28, 2004, 12:56:59 PM »

Herb,
Thank you for your response publicly too. As I believe in what you are saying. I have been to the surgeon again as of yesterday (4/27/04). He knows of my total displeasure in his surgical proceedure and results (including the disfiguring scar I will now carry for using the tape around the incision has caused the scar to open slightly and made it bulge for which he cannot guarantee that will go away). I go under the knife again on Monday (5/3/04) to hopefully get the generator relocated where it should be and stitches put into the chest wall and skin to hold it in place. I believe that these will be permenant for the "pocket" that has formed now travels all the way up to my shoulder and he is not sure if it will ever close back together with the generator being secured by scar tissue. Someone brought up a point to me about having it done "correctly and via protocol" at this point and I would not even discuss that option of a second incision site under my arm for all it would do would be to create and L shape and give the unit two options for exit. The unit now travels from the base of my neck to my shoulder and I am constantly having to manually move it bck to place. I am using tape and gauze to "hold it" as best in place as I can but daily activity moves it all over the place and I am to the point that the tape allergies have me so raw all over that I am bleeding and unable to locate the tape strategically to hold it. I cannot use anything on the sites for now because Neosporin or any antibiodic ointment makes the skin oily and tape unable to adhear at all. YES I am miserable but STILL positive. At this point the surgeon is unsure if the leeds are still even attached due to all the mainpulation with the unit and the fact that we cannot tell if it is even "upright". I was scheduled for turn on this Thursday but have had to postpone it again until this is complete. I was not as active in my decision making with this proceedure as I should have been. I jumped in with both feet, trusted that what everyone was doing, everyone knew about and trusted the judgement of Cyberonics itself for the choosing of the surgeon (they even scheduled my appointments for me). I was DUMB in that aspect....especially considering that at one time I had brain surgery that I knew EVERYTHING about prior to going under for 10 hours of surgery and I let this surgery go without full knowledge. I feel, unfortunately, that I am to blame as much as the surgeon for I did not "step up to the plate" as I should have. When this was proposed to me I was also at a very low point in my depression and any alternative at that point was promising. AGAIN, I could live with the seizures, the depression and mania I cannot live with much longer. I am single, I have only me and my children and I am my own decision maker and have no advicate for myself except me, be it in a depression, mania or normal state. As I am sure you know, a lot of wrong and uneducated decisions are made during depression or mania (at least in my life they have- ie., giving away a house of furniture and electronics and charging 12K worth when there is very little income in the household-a catapult for my first divorce-that is just on of the minor infractions). I am not playing poor pittyful me nor am I playing marter-sp??-I am just stating my situation and what has gotten me to this point. I plan to move forward, I have returned to work until the next surgery and will again return to work as soon as I can after that (I am on pain medicine for the unit is brusing the collar bone and with irradic moving is causing a lot of pain and pressure on new areas it is trying to move to being not secure) and will schedule the turn on as soon as possible, I have gone this far. Cyberonics is now investigating this "new" approach and as I understand it, I do not believe that it will be used again. The were no circumstances that my surgeon should have deviated from normal protocol, in fact-being large breasted- he should have stayed with standard protocol for surgery for the fact that the breasts would cause pressure against where the unit was placed as soon as a bra was put on, and open a great chance of movement for the unit was in so high up and so close to the collar bone to begin with WITHOUT it having moved at all. I wish ALL the best, pray NO ONE goes through this in the begining, and THANK EVERYONE for their support, wisdom and advice through this. If you remember, the only person I have in the area is my mother and she was totally against this from the get go and unfortunately is one of those "I told you so" people. KEEPING A SMILE ON MY FACE............................Anita
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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« Reply #23 on: April 28, 2004, 06:54:14 PM »

Dear Anita,

Let
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« Reply #24 on: May 02, 2004, 07:32:25 AM »

To all,
I received a call on Friday from the Doctors nurse questioning whether or not my medicare would cover this procedure and was also informed at this point that the doctor is doing this in his office instead of a hospital setting. My heart stopped. This was never told to me until that point. After that conversation I called cyberonics and questioned this and all that has taken place up until this point. I was told that someone would get back with me. I have not heard from anyone. My concern at this point is for my health and for the chance of infection close to the heart, let alone the nurse (not the doctor) informed me that he would be making another incision into my chest to accomplish his goal. Scar #3. ALL I WANT IS TO BE FIXED and all that I am getting is the runaround from all. The nurse also told me that this will just be done under a local-not being a whimp but I have a very week stomach and can just see myself "tossing my cookies" all over the place. She informed me that it would be allright. But I also questioned her as to if he had a surgical prodceedure room that is sterile and she told me no that wouldn't be necessary. I am afraid at this point, still in pain and at a total loss as to what to do. Cyberonics is no help (thy won't bother to call me back), the surgeon in my opinion is covering his ass on this one and I am the sucker being cut up to no end. I am 36 and single and hope to oneday find a new partner in my life. I have enough other downfalls to deal with let alone now 3 highly visable scars. I have contacted a Neuro Surgeon who advised me that he would not want to mess with it do to it being another Dr's proceedure and that the doctor is the one responsible to get it fixed. My Neuorologist is at a loss for AGAIN I am his first VNS patient so he has no idea of complications associated with any of this except the knowledge he has gained about the operation/settings of the generator. At this point I want to cry and just have the thing removed and just deal with a medication juggle the rest of my life. I am Medicare only, any RX's that I receive are out of pocket and with being a single mother and missing all this work I am now down to zero monies and am afraid that with anything new he puts me on, be it for pain or antibidoics that I am screwed cuz I cannot afford it. I AM SCARED!!!
Anita :(  
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
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« Reply #25 on: May 02, 2004, 07:36:00 AM »

By the way, the one answer I did get out of Cyberonics is that the proceedure is NOT to be done this way. But they "will check into it".
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« Reply #26 on: May 02, 2004, 03:22:28 PM »

Anita,

Reading your posts has me utterly shocked!  You are getting the royal red carpet treatment of all times.  Now, my friend, I believe it is time for you to contact the medical board in your state and start lodging complaints.  Also appeal to Medicare, if they will pay to put the damn thing in, they must pay for the corrections.  

If these options give you no help, I believe if I were in your shoes, I would contact the news media and camp out on Cyberonics' lawn until your health is restored.

What that doctor is planning to do in his office sounds outragious, and highly risky.  And this is a doctor that was recommended by Cyberonics?  I had a total knee replacement, under a local anesthesia (my choice) and that was a unique experiance, but this doc sounds like he is trying to cover up his mistake by making an even bigger one.  

I hate to tell you this, but the run arround you are getting from Cyberonics, in my opinion, is typical for when nasty problems arise that they do not want to acknowlege.   Get busy on that phone, and TRUST YOUR INSTINCTS!!  If it feels wrong, it is.  I will keep in touch with you.

Birdbomb
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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 #27 on: May 03, 2004, 03:48:25 AM »

I have given up on Cyberonics, I feel that their only position in any of this is to sell their unit. There is NO support for anything after implantation as I have found not only by my contacts but from all of the posts read on here. I am giving this Dr one more chance to do something (I have to, the unit now floats up to my shoulder, is brusing my collarbone to death and nauseats the death out of me to have to reposition it) before I pursue legal action. And YES I do feel that he is covering his own ass. His jovial remark on my last visit was "let's just thumb tack the thing into place", not something to be said to someone who is crying, at a loss and in pain. I did some more reading on him on the web and again all I come up with is what a GREAT ENT he is for children. The key word being CHILDREN, for which I noticed on my last visit that was all that was in the waiting room. I am sure Cyberonics has contacted him in regards to my complaints for the attitude of him and his staff has become very cold and distant, not what I delt with in the begining. Depression is setting in deeply, there seems to be no way out of this and after contacting medicare, they will not pay for a removal, let alone I am trying to figure out why in the heck medicare is going to get billed again for a dr's mess up. Remeber I a medicare not medicaid and I pay for my insurance every month just as anyone on private insurance does, though that does not give any doctor the right to treat those on medicaid with indifference either. People look at me as if I am a freak, the scar even after 2
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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« Reply #28 on: May 03, 2004, 07:54:17 AM »

Surgery done. Feel better not having to manipulate the unit around to get it out of my collar bone. Stitches were placed under the skin to hold the unit in place. A new incision was made to access the unit. The unit had turned upside down but that was also corrected. Leeds were still firmly attached. I brought up the question of the leeds being placed upside down. He said that unfortunatly there was a surgeon in houston that was doing it but only because the leeds were not marked at the time. The proceedure WAS done in his office and took about two hours under local anesthia. I am to lay still for the next few days and take things lightly so that the stiches do not pull loose. I look forward to a peaceful sleep now. Thank you to all for your advice, wisdom, negatives and positives. All have given me courage and strength and the knowledge that I can take some control over my medical issues. (THANKS HERB AND BIRDBOMB). I will schedule the turn on date for late next week after the stitches are removed. Still staying positive as can be :rolleyes: Take care all and will post again soon.....
Anita
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38 y/o female with pseudo seziers as per new neuro-who the heck knows (my seizure issue still on debate 10 years later), BiPolar, May Turner Syndrome, newly high blood pressure, DVT, PE's and an unexplainable blood clot disorder.
FORMER VNS implant patient
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« Reply #29 on: May 03, 2004, 12:25:51 PM »

Anita,

I do hope things finally work out for you.  You have been through a very scary ordeal.  Please take it easy and watch your temp.  If you begin to run one, have the doc put you on antibiotics.  You are very brave.  Good luck.

B
B)


P.S. You said the unit flipped, now did the doctor do a lead check on it?  A visual inspection is not enough to tell if they are damaged and damage could be any place.  The wires are fragile and can get tiny breaks and with the kind of migration you had, it would be purdent to have a lead check done. But you cannot be prepared for the sensation.  


That was just utter malpractice, a botched job if ever and he tried to cover it up by doing the surgery in his office instead of an OR. IMO!
« Last Edit: May 03, 2004, 02:17:22 PM by birdbomb » Logged

"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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