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nitarita34
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« on: May 10, 2004, 09:09:55 AM »

Hi all, spent the day off work again. The unit is up to my collarbone again. After continue harrassment of the Dr's office with still no response I finally got a hold of Cyberonics and my Case Manager instead of Sales Rep. They seemed to be of some help along with a trip to my neuro today and his not very happy attitude at what has gone on and what is still going on. He got on the phone and informed me that things would be taken care of immediately. Shortly after leaving his office I heard from the surgeon's nurse (FINALLY after trying to contact Thursday, Friday and all morning) along with having Cyberonics trying to get me a list of surgeons that are willing to take this on, which I am finding to be little to nill. They do not want to mess with another surgeons operation. My neuro has a nero surgeon that he refers to but that surgeon has never done the implant and seemed at a loss as to what the device is to beign with. He is out of the question. Surgeons nurse called trying to put me back on narcotics, not what I want, I just want fixed. Neuro agrees that I am not crazy and that the device is NOT where is should be and I have NOT been handled in the proper way and there is NO WAY that he would even attempt to turn it on. That still does not fix the problem. I am giving Cyberonics another 30 mins (make sure I get to them before 5pm) to call me back with info and the surgeon another 15 mins to call me back as the nurse said he was going to do over 2 hours ago. I sit here feeling like something is moving but still frustrated because #1 I have to have a THIRD surgery. My employer has began to threaten my employment at this point and to be honest, I do not blame him. I do not know what to do but try and take care of this FIRST and worry about job second. I cannot work like this due to pain, lack of being able to sleep, the itching (though Neuro does not believe it is infection but not sure WHAT is going on), and my neck keeps getting sharp pains, let alone a car ride is a NIGHTMARE, hitting bumps moves the unit. I have sutures from the second surgery instead of the "super glue" method of the first. I have also demanded of Cyberonics not to be sent to another surgeon that will try and do this in his office again. I have taken an active and AGGRESSIVE movement with this at this point. I do hope to get some results and have been told by the neuro that taking the time to heal is not what to do right now for it will make a mess to get to the unit again, to get it out and reposition it. I do not care WHO fixes it at this point, be it the original surgeon (for that is looking like about my only option) or another but it will be done on MY terms and with MY health in consideration. I do have to say that I appreciate Cyberonics atempting to step up to the plate on this and be of some assistance and not try and pawn it off. Not sure truly of how much help they can be besides a list of who else will mess with me but that is something. I have expressed my true displeasure with the surgeons nursing staff as to the goings on of all of this and if the surgeon would call himself like I was told that he would, he will hear it from me too. THANK YOU FOR CONTINUALLY LETTING ME VENT!!!!!!!
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: May 10, 2004, 01:54:00 PM »

Surgery scheduled again for Thursday morning. No luck with other Dr's. Origianl surgeon finally called me himself (has always been his nurses), claimed that he had never gotten a message from his staff until today and was wondering why so long after the second surgery(1week) I was now having problems. He seemed very upset with his staff and for the first time the guy showed me a little compasion. No in office attempt this time, we discussed the mess that was last time and he highly appologized for that mess. We talked about WHY this is happening and he did bring forth a good point and something I hadn't thought about but looking back explains why/when it got knocked loose both times. I am large chested, both times I was fine until I put my bra on. When I did that each time it tore the stitches by moving the unit. He is going to discuss what apporoch to be used prior to going under this next time and I informed him that I also want the unit and the leeds checked out and he agreed on that also. And yes I am still apprehensive of him but am having a hard time to find anyone else to help and so is Cyberonics. He knows it will have to be positioned differently this time and told me up front that it will be another large incision for him to get in there and put it deeper and lower down. Not being a doctor but using some brains I came up with the idea of putting the unit into a mess sack (the type of stuff used in cardiac patients -watched too much NOVA and Discovery) and that would give the ability to anchor the scak down instead of trying to anchor the unit. He is going to figure out if that will work. Made sense to me that it would give an easier way to secure it down and stronger, other than that all I can think of is good ole duck tape and we have already tried to tape it down from the outside. I wish he would have brought up before the large chest being an issue and I would have avoided a bra(and the public) for longer. He also agreed that my move to get of the narcotics for now was a smart move and I can increase the Benadryl for the itching to double what I was taking and I will not overdose on it though will probibly sleep a lot. I feel like I was heard today for the first time and hope that the course of action that I took will have some good results. Take care all and I will write again over the weekend when I get up and about a little to let you know progress.
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 #2 on: May 14, 2004, 11:57:03 AM »

This is going to be short and brief for I a m suppose to be flat in bed but wanted to let u know that I am out and the whole generator has been repositioned in my chest wall, this time to the left side and the pocket fron the right side was cleaned out and closed (I am takin getting cleaned out to be that I had infection beacuase for te first time after sugery I was put on anticiodics. Please excuse all the typos, I am highly medicated at this point and about to go and lay daown but wanted to let you know that #3 has taken place------------wish luck, I will write moe when I am in a more coheirent state of mind and can sit up for longer than ten mins.
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 #3 on: May 16, 2004, 02:04:55 AM »

Well guys and gals this was the last attempt. It migrated AGAIN. The surgeon closed off the origianl pocket with sutures and created a new one over to the left more. This time I am brused as can be and again hurting because the thing is in my neck. The surgeon told my friend that took me, when he called her (he told her that he figured no one was ther with me so he didn't come out to the waiting room and my friend had to raise hell with the waiting room attendent to find out what was going on for it had been over 4 hours), that #1 hed had to take a lot of time cleaning out the other site where the implant had been in(infection I assume cuz for the first time I am on antibiodics) and that he never knew when I would see him in his office each time if I was in pain or just wanting drugs, when I had told him last Friday that I still had a refill of Davecet at home and had quit taking htem. That was very upsetting to me because for every time I was in his office after exch sugery I was crying because the pain was so overwhelming and I only saw him  4 times, the first was the pre op visit, the second time was to show him that it had migrated and he used his "tape it down method, the third time was to show him that the tape down method had not worked so he scheduled his inter office surgery for which I even let the OR doctors know that he had done that and they were shocked too. And the fourth time I saw him again was in the OR and he was a (excuese the language please) bastard to me. I take that attitude because of the reoprts that I have slowly but surely tried to file against him. (with the UT Board of Examiners for which he also teaches-not any legal action at this point) If I thought I was at a loss before, NOW I am truly at a loss. I have remained in bed not doing anything at all until this morning when I got up to use the restroom and looked in the mirror and saw the buldge that I realised it was loose again and there was no sense in being a bed vegateble at this point now. I was lucky that he went in through the second incision site instead of through a new one. I gave him a few suggestions PRIOR to going in this last time and one of them was to put it in the chest wall as one of the guests on here had posted and the idea of putting it into a mesh sack (the kind of stuff they use in cardiac and hurnia patients) so that he something to sutur down to the chest wall  but he assured me that he knew of the corecct approach to it this time[/size]...........NOT. I did have a few vomiting episodes over the past few days and am not sure as to if that would have knocked it loose or not. The were not violent, just upset stomach sort of thing(yeah I know gross to explain) I am crying at this point #1 for the frustration #2 for the pain against the bone, #3 the pain form the surgey its self, like I said I am terribly bruised this time. The only other surgeon that Cyberonics has found that would take my case on is thee same surgeon who removed my pituitary tumore back in 95 and as mom "kindly" reminded me hew was the catlyst to the epilepsy to begin with and when I sarted having problems while in recovery at the hospital, the nused would page him and it would be 2-3 days before he came by. It was mu neuro back then that would come ove and try and figure out what in the heck he could do to help me. And that proceedure is a whole other story within itself (at least I have the medical files on that one in my possesion).
I guess I am not a candidate for this proceedure and the next cut will be to remove it. I am dissapointed and upset. I have tried all that I can do. Hopefully after removal I can find find another surgeon that will attempt to put it in after I am healed. And will not feel like he is walking into someone elses mess.
I JUST DON'T UNDERSTAND!!!!!! And also I have gone with out a bra to make sure that it was not a catalyst to movement. I have friends and my old neuro in Bryan College Station and might consider doing it up ther after the gilrs are out of school, I don't know, my jead is just spinning at this point :blink: :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.
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« Reply #4 on: May 17, 2004, 06:26:37 AM »

Panic before panic due!!!! The unit has not migrated the, round area around my neck and chest is all stitches and tissue to stop the unit from going up there. I found the unit, It is under my breast on the chest wall. I can feel the edge of it from the side of me. Doctor never told me where he put it so I figured all was out of whack again with the pain by the neck and the swelling and such. Taking my time to recover this time and making as little movement as possible. I do not want to chance this one again. Sorry for the last panic letter but after all I had been through it wouldn't have suprised me. I will keep in touch and let you know when I get it turned on............thanks guys, sorry for the panic........
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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 #5 on: May 17, 2004, 04:25:01 PM »

Oh Anita,

I do hope this works out for you.  You have been through more than your share just trying to get the damn thing to stay in place!  Just one more thing, and please, please, remember this...it is not a cure all!  

It takes TIME to adjust the settings until they find what is right for you.  It took me almost a year to find mine but as you know, my body just could not accept this intrusion. :(


 
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« Reply #6 on: August 01, 2004, 11:09:48 AM »

My dear friends, I am off to the Dr. Tuesday to see about scheduling removal of the implant. It is not working at all, my seizures have increased along with the depression BIG TIME. I also have an area in my breast directly below the implant that has turned purple and cold and is superficial and not related to anything else. AND am still itching terribly. Allergy to the unit? Who knows, just get it out of me, the itching is making me nuts. When the unit "fires" not only does the throat constrict but my heart begins to race as in a panic attack. I am so happy that this unit has worked for some and I have given it a true college try but this is not for me. If it is to help with chronic depression then how come for the first time in 4 years along with more medicines than ever that I became so suicidal that the attempt was made. Back to the drawing board for me and a big hope that Medicare will cover this removal. Also am off to find a new Neuro that has more concern about me and my welfare than the fact that he had a patient with an implant to learn from. He still seems to have no concern about checking on the pituitary tumor that has not had an MRI done to check it in two years now and my last Neuro and all previous were having one run every six months to chart the growth. Time for a total revamp of my medical crew and time to get a grip and control over all of this again. I had more control prior to implant than after the implant. My blessings and prayers to all.................Love,
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 #7 on: August 05, 2004, 02:07:23 AM »

If it is to help with chronic depression then how come for the first time in 4 years along with more medicines than ever that I became so suicidal that the attempt was made.


Oh Anita,
My heart goes put to you.  I noticed that you suffer from bi-polar, also.  I've had the VNS for 5 years now, and although it has helped with seizures, it hasn't done a thing for me as far as depression.  I, also, was to the point of suicide.  Finally found the right dr. to treat bi-polar.  I was initially put on Zyprexa, which was another mistake for me because I ended up diabetic from the misearable drug.  I also had brain surgery in 1990, another mistake.  I came out with more severe seizures than I went in with.    I wouldn't advise brain surgery to anyone, although they say the surgery has improved over the years.  Hope you find the right dr. willing to co-operate.

Hang in there!!

Cindy
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« Reply #8 on: August 07, 2004, 02:10:45 PM »

I do hope you are doing better.  It seems like it's been a while since your last post and I am curious if they havd removed the unit from you yet.  Mine bothers me at times too, the leads in my neck get itchy and my chest is actually painful from the unit to the incision site.  My P.T thinks scar tissue has built up.  Not much you can do about that.  But you know, I can almost flip mine over when I'm lying on my right side.  What a yucky feeling. B)  
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« Reply #9 on: August 09, 2004, 09:45:31 AM »

GUESS WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am jumping up and down!!!!! My unit comes out on the 23rd of this month!!!!!! YEAH!!!!!!!!!!!! After continual headaches, two suicide attempts and more seizures than ever before, let alone the purple spot that has developed superficialy in breast right below the implant along with it being very cold, the itching like no tomoorw, surgeon said, LETS GET IT OUT!!!!!!!! I AM SOOO SOOO SOOO SOOO SOOO HAPPY. Help Depression my ass, haven't had suicide attempts in over 10 years and then 2 in one month, help seizures my ass, they are worse than  eing on no meds at all and I haven't gained wieght like I am since I was pregnant AND I am on triple medication that I was prior to this STUPID thing in me and yes I said STUPID!. Man I gave it the ole college try, cheerleader for it and all. Well this cheerleader just lifted her skirt and has said "kiss my spanky pants". I AM OUTTA HERE! I will let you know how it goes, funny thing is that I didn't even bother to tlell my neuro for his response would be, "let's just turn it up". Scuse the language BUT SCREW HIM. We are going to use my maggnet to deactivate for surgery then cut the wires and remove that way AND find another neuro.
LOVE YOU GUYS SO MUCH AND I WILL LET YOU KNOW HOW IT FEELS TO BE WITHOUT!!!!!!!!
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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 #10 on: August 09, 2004, 12:41:22 PM »

This has been a living nighmare for you.  I would like to take this time and THANK YOU for sharing this part of you journey. It may not be over just yet, and your situation has been a doozy!.

My hopes for you, Anita, is you will at least get back to where you were before, If you are better, HOORAY!  After all you had been through, you still have your optimisim.  I am so sorry things went as badly as they did, and do wish you will continue to keep the board updated with your progress.

Birdbomb
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« Reply #11 on: August 09, 2004, 02:31:23 PM »

Hang in there nitarita, there are folks here that care about you.
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« Reply #12 on: August 10, 2004, 04:18:04 PM »

I am excited to have the unit removed and also am finding a new neuro to boot. No MRI in 2 years with having a brian tumor makes me a little nervous along with the fact that he has not ordered blood work on me yet to check med levels and the general CBC along with the hormone gamut to check to see if that is what is triggering the depression. The most I get is "let's turn the unit up" HECK NO, just shut it off so we dont have problems during removal but surgeon said even if we cannot get that done we can work around it and just magnatize it until the leads get disconected. It has been a roller coaster for me, but I am always so glad to see that it does work for some. Keep up the good work on the board and please let us all continue to support each other be it if we have it done and it is sucessful or it ends up being a failure. All of our stories on here help to educate everyone but no story is as good a a knowledgeable doctors advice.
Blessings to all, oh and by the way, due to many chaotic things this month, including a move, I have postponed the surgery until next month. Will keep you guys informed.
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 #13 on: September 07, 2004, 02:10:28 AM »

Promise not to let this die for the story is not over, I will let you guys know how it goes this month between a neuro who has no clue that i am getting it removed and a surgeon that seems to let me know the just of what is up with what Cyberonics lets him in on AND how the removal itself goes as far as how far up they take the leed wires and all that good stuff. My love to all!!!!
Anita :Great!:  
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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 #14 on: September 24, 2004, 05:57:14 AM »

The tension grows, the nervousness is increasing, the excitement is overwhelming. I am sitting her eSCARED to death about another surgery, reflecting on my daughter's coment last night of "mom, you have had so many operations why are you nervous". Guess that is true but under the knife period still makes me apprehensive. MONDAY, MONDAY, MONDAY (Immitating the guy from the tractor pull race advertisements on the radio) 8:30 AM , BE THERE. Ok, now I have myself laughing again, taht and this goofy new headache medicine the neuro put me on this morning and whopieeee brain is retarded at this point. Anyway folks, unit deactivated, surgery set up, insurance all worked out and wham bam thank you mam, I will VNSless in 72 hours. I look like a freak right now that I am no longer worried about what I will look like with fresh incisions. Left side of body swollen up like an over ripe watermelon, right eye swollen, just a wonderful sight.  Neuro came to the conclusion today, after seeing what a blue jean rivet does to my body after only wearing the pants for an hour or so, "Um I think you are allergic to it", well DUH. SO, anyway, after a dumb look from him when I asked about why we haven't monitored the brain tumor, and the "oh, um, we need to run your scan after this is out, we couldn't do one while it was in" (OK folks, now him knowing I had this tumor the first time I saw him, months before the VNS idea, WHY IN THE CRAP did he not tell me that a normal MRI can no longer be run and order one BEFORE the stupid implant, no not all blame goes on the doctor, I should yap off my big mouth, but I forget half of what I need to ask him and he forgets half of what he should tell me-fixed that one-gave him a typed description of every frigging problem that I have or am having with the VNS) well DUH.
Doin the happy dance and will write to all either over the weekend if I can snag my mom's computer or after I get home from surgery. Still wondering what to do about the leeds on the neck for it too is exposed metal. Will cross that one either under the knife on Monday or after recovery again.
My love and happiness and sillyness to all!!!!!!!!!!!!!
Anita :wub:  :Great!:  :blink:  :D  :huh:  :Yeah That:  
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« Reply #15 on: September 26, 2004, 01:05:46 AM »

Are the lead wires being removed as well?
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« Reply #16 on: September 26, 2004, 03:43:21 PM »

I will find out when I now find a new surgeon. I messed up with my posting and created a new topic, but my surgeon himself is injured and possibly not even returning to practice let alone surgery. He is having surgery this week himself. So I start all over. I need the leeds out due to the metal allergies but am unsure as to if I truly want to risk it let alone a surgeon I trust enough to do it. I begin my quest again on Monday trying to find someone.
Take care!!!
Anita :wacko:  
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« Reply #17 on: September 27, 2004, 02:12:57 AM »

If you happen to find someone that will take out the wires and coils, let me know!
Elisa
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« Reply #18 on: September 27, 2004, 06:13:13 AM »

No problem Elisa!. One of my surgeons associates called today and is willing to do the surgery herself but she has never handled anything to do with the VNS implant and I am unsure of this approach. I  meet with her October 10th and will see. I understand that removal is nothing like implantation, but I need someone that will take out as much of the wires and metal as possible and not destroy my body any more than it is. I am also waiting to hear back from my neuro to see if he had any luck with Cyberonics finding someone for me. My love and blessings to all!
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 #19 on: September 27, 2004, 12:13:52 PM »

I wish you the best of luck.  I'm looking for someone that has taken out the coils or anchors around the nerve.  And done to more then one person, I don't want to me the ginnea pig!!!  I have enough problems as it is without ending up in more pain.  Mine is all removed except the anchors, but those are still causing me issues just like you.  
Elisa  
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« Reply #20 on: September 28, 2004, 12:53:22 AM »

Yes Guinea Pig is my fear too and I am finding it hard to believe the lack of qualifies surgeons to do it here in Houston. This is Cyberonics headquarters, you would think that I could find a few to choose from. I am nervous as crap about the coil issue and so unsure as to what to do but I need to get the metal out of me, just not wanting to end up with a cut vagus nerve, I really have no clue as to the extent I would have for scar tissue since the leeds were put in only in April, I have no clue as to if it is fully healed. I wish you the best of luck too!!!! If you find someone let me know, I am considering traveling for this and SOON.
Thanks!!!
Anita
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« Reply #21 on: September 29, 2004, 03:04:29 AM »

Petunia/Elisa,
I have found a doctor that has removed and is willing to remove the coils. I meet with him on October 4th and he is the one that Cyberonics has refered me to. He has done about 4 or 5 coil removals and will speak with me in more detail aobut it when I visit with him on Monday. I am in Houston and can email you the name and phone number and his demographics if you like. I do not like to post physcians names or numbers on the board. He also has done a large number of implants but primarily peidiatrics. It is so funny though how a doctor does not like to take another doctors patient, if it wasn't for my surgeon being out of commision they would not have seen me, but you coming from somewhere else should be different.
Only issue with him is that I will not be able to get into surgery until the 9th of November.
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.
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« Reply #22 on: September 29, 2004, 08:51:30 AM »

:goodluck: We'll keep our fingers crossed on theis one, Anita.  Hopefully your body won't self destruct befor the November date and then have to be emergency surgery.  I'm very worried about your metal allergies progressing to a more serious state.

 
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
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« Reply #23 on: September 29, 2004, 04:52:14 PM »

birdbomb, my neuro is too. my problems with vision and coordination and fuuzy brain are increasing daily along with severe pain at the implant and the terrible swelling. Called neuro today cuz i can handle a lot of crap but this one is getting me very scared, i am just way not me even on a very bad day. told him about Nov surgery and he is calling Cyberonics immediately and wants the unit out with in the next week or two. He cannot asses what in the heck is going on with me until I am opened up. i now cannot hold onto a set of keys in my left hand without droping them about 6 times before getting them into the door. Told him that too. He doesn't know what to do excpet get onto Cyberonics and I don't know what to do because of the very limited amount of surgeons that are here. I would like this surgeon that I am seeing monday to do the surgery because he has removed coils a few times and i might have to take the risk or at least gain as much information as i can to evaluate taking the risk. I am finding him to be assertive with Cyberonics at least so maybe he can have some pull with them and the surgeons. He does not know what to do with me right now. Told me today to go to my general practicioner. I don't have one, have not needed one, just have brain issues so have always seen him. Guess I will be scowering the phone book tomorrow for one of those, not sure what he/she can do but at this point a team is better than one. And yes, I am now whining and complaining and i know it. I am scared and family is just looking at me like "well we told you not to do this" and so there is no support or suggestions there. I am trying to go about life as normal but it is getting more difficult by the day. Hey the original problems(seizures/bi polar/tumor) were NOTHING compared to where my body is at now and not know what is going on leaves one on the edge. Thanks for listening, thanks for letting me complain my hinney off. I need to get it out(the emotions-let alone the stupid implant).
Love and peace to all!
Anita :Thanx:  
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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 #24 on: September 29, 2004, 05:25:04 PM »

:Great!:
Anita,

It is great to hear you have found a surgeon to remove the coils.  Hopefully he can help you feel a lot better.  If I was in your place I sure would check him out.  My prayers are with you.

You need to mark the days off the calender, taking a deep breath every day and say to yourself one more day close,  then  :D

Darlene  ;)
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« Reply #25 on: September 30, 2004, 01:35:23 AM »

Anita-
I'm so happy for you, well I would be happier if they said that they will see you tomorrow.  We can always, hope and pray for that.  I don't know what a GP is going to do for you at this point, mine wouldn't and still will not touch me with a ten foot poll because of all of my issues. And they really wouldn't touch me when the VNS was in me.  But, maybe you will have better luck then I.  
I would like the name of this guy that you are going to see.  I want to know all the dirt when your back from seeing him.   ;) Or should I say, just what you think of him.  
My doctor has finally admitted that all of my nerve pain in my face and down my neck are VNS related, and is willing to go to bat for me.  She will call anybody that I can come up with the name of, that might remove the coils. For me it is trying to figure out if removing the coils will really make the pain go away, or if it is just scare tissue you doing this.  I believe it is the coils, it is just to painful.  I like you am trying to get on with life, I have managed to get out of bed ever morning this week and get my kids off to school.  I on nerve blocking meds now, like I need to add more meds to my list.  
I want you to know I turely understand your  pain, in more ways then one.  I to have a family that thought that I shouldn't do the VNS thing.  Every time I talk about it I get "the look", like we told you so.  
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #26 on: October 06, 2004, 01:39:36 AM »

Finally an ENT that is coordinating surgery with Cyberonics and my neuro (surgeon and neuro didn't know each other with all that has gone on prior to this). Progress in the making. Surgery next week, will get a phone call Thursday or Friday to be given date. Big relief on my part. Doctors don't know at this point if it is VNS problems or Pituitary tumor problems, but have to get rid of the VNS (wasn't helping at all anyway) and then get the MRI run. Now the leeds, ENT is checking with Cyberonics to get the exact compound of the leeds to see if they do have to come out. I din't know this, but the vagus nerve sits behind the jugular and the coroted (I cannot spell) artery. No to safe of a surgery and one thing that I was warned of is that if the leeds come off and something goes wrong I face GI problems for the rest of my life. Will let you know what the surgeon decides this week, the issues and problems are on the table and now it is a matter of weighing everything out. Physical problems progresing but nerve problems settling knowing that something is moving forward. Will be in touch.......
Antia :note:  
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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 #27 on: October 07, 2004, 01:35:09 AM »

Surgery Tuesday. Inpatient this time, leads being removed too. Nervous as can be but anxoius to get body back to some normalicay. I am just tired, swollen and in pain and brain is stupid now. Seizures up to a constant, go through the day and night like I have my finger in a light socket. I know the risks I am taking with the lead removal but also know that it has to come off. MRI to be run while in hospital to check on pituitary tumor to see if that is a cause to some of the problems too.
Just not my happy self now but will bounce out of it.........my love to all,
Anita :Icky:  
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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: October 07, 2004, 08:31:39 AM »

Oh, I will be thinking of you. I think your leeds coming off is going to be fine.  Who did you find to do it, do you like this guy?  Tell me what they told you about all of it.  
I know so many questions, I just really want my leeds off as well. I tired of living in this pain.  
Elisa  :goodluck:  
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #29 on: October 08, 2004, 06:59:53 AM »

Hey Petunia, It is an ENT that handles adult cancer surgeries so is accustomed to delicate work. I am comfortable with him and his assistant but do know that I am taking risks with this. I will let you know how things turn out and if you want I will send you his phone and all. He is older and seems to be more on the conservative/concerning side(hey the first one to order some darned bloodwork on me and to bounce a few patients to get me in immediately for surgery) Will let you know how it goes!!
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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