![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 26 to 50 of 57. Go back in thread:
Posted by gardenergirl on January 9, 2006, at 16:53:22
In reply to January 2006 Update on VNS Therapy, posted by juanantoniod on January 9, 2006, at 1:13:37
Excellent and informative post. Good luck with your recovery from surgery, and with the device activation.
gg
Posted by juanantoniod on January 31, 2006, at 1:43:20
In reply to January 2006 Update on VNS Therapy, posted by juanantoniod on January 9, 2006, at 1:13:37
Today I got my VNS stimulator device activated. I went to my psychiatrist’s office in Glendale, where shortly after I got there, a youngish, petit, beautiful African American woman walked in. I assumed she was Tawanna, the rep from Cyberonics, the company that makes the VNS therapy device, so I introduced myself and asked if it was her. Sure enough, it was. Since the doctor had not yet come back from lunch, we had a nice, long chat about the benefits of the device and what I knew about it. She was VERY, VERY impressed with my knowledge and understanding of the process and my being so PRO active in my care. I think I deserve a pat on the back for that!!! In addition to discussing what I knew, she also showed me what the actual stimulator and lead wire that are implanted in me look like. It was kind of cool to hold these things in my hands that were implanted under my skin just a few weeks ago. She confirmed what I had already known, that my process from finding out about the procedure, to implant, was VERY fast. (Another pat on the back for Antonio there!) She said there are people who started the process way before me who, for various reasons, including insurance authorization, have not yet gotten the device implanted. I’m so very, very happy for my being so aggressive in getting this done and for the blessing of the care that I am able to receive with Medi-Medi (Medicare and Medi-Cal). All this time, I was afraid of going on “public benefits”, when in reality, they are actually better in most cases.
It was also quite cool because while we were waiting for the doctor, Tawanna asked his assistant for the “box” from Cyberonics. I assumed this would be a little patient starter kit or something, but it was the doctor’s actual programming wand and attached PDA. How cool is that??? I was the first patient who he ordered this for! I guess I’m a LITTLE snooty in that I love being FIRST, but it’s not so much that I have “beat” out other people, but just to know that I am on the cutting edge of medical care and technology associated with it. I also have to give kudos to Cedars Sinai Medical Center and Dr. Mamelak, my neurosurgeon, for the high quality, highly professional care I received from them. Because of what my friend, CamiloJ, is going through with his partner thinking he has a brain tumor, I really appreciate the care that I got from Cedars. Particularly the heart scan. This was one component that was necessary to get the procedure – to be cleared medically of any heart complications. I was going to just go to my “old” cardiologist in Glendale and get the scan done, hoping that he would just sort of “sign off” on it, as routine. Instead, I went through Cedars and I haven’t regretted it for one minute. From the time the doctor said he wanted the scan, they were ON IT! I was able to book the scan within 24 hours of requesting it, which is phenomenal. They told me I had to have no caffeine for 24 hours, so I immediately switched to Caffeine Free Diet Coke, since it is the only thing I drink (Diet Coke is) and I couldn’t be without a refreshment for 24 hours. On my way home from the doctor’s office, I picked up 2-12 packs of Caffeine Free Diet Coke and drank them up until the time of my procedure (and I’m talking right UP to the time). I even took one with me to the procedure in case I got thirsty.
Well to get to the point of this story, when I registered for the scan, I told them that it was needed for surgical clearance to happen that week. I also told the technologists this. They assured me that this would be no problem. Normally, when you have a scan or radiology done of any type, it has to be done first by the technologist, then “read” by a radiologist, which usually takes about 2 days for him just to “read” it, let alone get the reading to your doctor. Well, I kid you not, I was in for my scan at 2 p.m., and the scan took at least 2 hours, but by the time I got home on the bus, the doctor had already called to say he had the results and was clearing me for surgery. AWESOME!!!
So, after Tawanna showed me the pulse generator and lead wire (the implanted components), she opened up the Cyberonics box and got the programming wand and the attached PDA set up. Around this time, Dr. Asimus, arrived and said he would be ready in a few minutes. We chatted a bit more while she did her thing, then we went into his office. He asked me some update questions about my current situation, medications, etc. I told him that my depression had been at a 6 since just before I got the surgery, up from the 5 I had been at for 2 years. (0 zero is no hope, suicidal, 10 is euphoric, almost manic.) This one point increase was due to the hope that having the procedure had given me. Dr. Asimus wanted his assistant to see the device being programmed, so he called her in and told her to hold all the calls. They had me hold up the wand to my chest and did some tapping of the PDA screen with the stylus. Voila! It was done, they said.
Tawanna said we had to wait for at least 2-5 minute cycles to see if I felt anything intolerable so we waited to see if I would feel anything. I did not. We waited for the second cycle and I did not feel anything. Just to make sure the settings had “taken”, they re-interrogated the device to make sure. (She said this should be done at each visit – confirming the settings before the patient leaves the office.) I went home feeling like a champion, knowing what I had accomplished in just 3 short months!
When I got home, I proceeded to do my normal activities, which include making phone calls to various businesses for appointments and such. During one of the phone conversations, I got hoarseness in my voice and it was like a whisper. I was so excited! I said to my partner, “Babe, it’s working! It’s stimulating me right now.” He smiled back, and I reached for the magnet to stop it so that I could continue with my phone conversation. I did not find the magnet in time to stop that cycle, but during subsequent phone conversations, when it came on when I was speaking, I used the magnet to successfully stop the stimulation and restore my voice. Later on, I started to notice that even when I wasn’t talking, I could feel a tightness in my throat when the stimulating started, and when I would test my voice at these times, it was a whisper.
I have an email in to my Case Manager at Cyberonics because I do not know if it’s better to try and talk through the stimulation whisper/hoarseness, or if it’s okay to continually stop the stimulation when necessary to speak as it’s happening. I emailed another VNS patient that I met through Live Journal and she said that she thinks the hoarseness will be reduced in time as my body becomes accustomed to the stimulation. Although the stimulation is not that intrusive, this would still be nice, of course, to not have any side effects.
I know this was a long post, but I wanted to give everyone as much detail as possible so that you would know what you might encounter if you decide to pursue this treatment. Please post here if you have any specific questions that I have not already answered.
Posted by jerrympls on January 31, 2006, at 1:49:17
In reply to Vagus Nerve Stimulator activated today!, posted by juanantoniod on January 31, 2006, at 1:43:20
As one of the 250 participants in the final FDA VNS study, I wish you all the best and hope that the VNS system works for you and your depression.
Good luck
Jerry
Posted by lifetime on January 31, 2006, at 2:51:52
In reply to Vagus Nerve Stimulator activated today!, posted by juanantoniod on January 31, 2006, at 1:43:20
Antonio,
I too would like to wish you wellness in your adventure. I am also pleased to read from your posting that it appears your surgery was uneventful.
From our experiences there should be no problem with deactivating your prosthesis when necessary to overcome voice changes when having a business telephone conversation although I share from experiences the longer the device is allowed to cycle through the days and weeks to follow in all likelihood the less one should experience voice changes and/or other side-effects.
I also noticed you made no mention of the VNS settings. Hereto I would like to suggest from our personal experiences that proactively taking part in my spouse’s treatment regimen by knowing and recording of all detailed dosing and VNS settings also proved beneficial in her care. We know all the parameter settings for my spouse’s VNS and are therefore able to participate and make suggestions when necessary. More importantly, by knowing the settings we were able to easily overcome side-effects that did crop up from time to time.
Based upon your writings I think you’re off to a good start and like you mentioned hope too is an important element toward one’s wellness.
Thanks for sharing.
Warmly,
Herb
VNSdepression.com..
Posted by lifetime on January 31, 2006, at 3:02:58
In reply to Re: Vagus Nerve Stimulator activated today! » juanantoniod, posted by jerrympls on January 31, 2006, at 1:49:17
Dear Jerry,
I was also curious to read how you are making out. Did your recovery from the explanting of the prosthesis go well? I don’t recall if you indicated whether or not you were able to also have the coils removed from the vagus nerve or were the wires just clipped as close as possible and left in place?
I do hope you’re doing well and that you can just chalk off your experiences to another treatment option in the battle that unfortunately did not bring any relief to you.
Take care of yourself and good luck.
Warmly,
Herb
VNSdepression.com.
Posted by juanantoniod on January 31, 2006, at 16:57:59
In reply to Re: Vagus Nerve Stimulator activated today!, posted by lifetime on January 31, 2006, at 2:51:52
Herb,
What dosage did your wife find was effective for her? I know I am at .25 milliamps to start, with a cycle of 5 minutes off and 30 seconds on. Are there any other variables which you think make a difference to the effecacy of this treatment?
Thank you for your help and encouragement.
Antonio
Posted by lifetime on January 31, 2006, at 18:23:05
In reply to Re: Vagus Nerve Stimulator activated today! » lifetime, posted by juanantoniod on January 31, 2006, at 16:57:59
Antonio,
Obtaining the optimum setting for each individual is a “Trial and Error Approach to Wellness." There is no data or parameters at this time indicating the optimal settings.
Efficacy was observed by me some two months after activation of my spouse’s prosthesis. The time to efficacy will also vary from individual to individual. The initial settings for my spouse were:
Output Current (milliamperes) .50
Signal Frequency (Hertz) 30
Pulse Width (microseconds) 500
Signal On Time (seconds) 30
Signal Off Time (minutes) 5
Magnet Current (milliamperes) 0
Magnet On Time (seconds) 30
Magnet Pulse Width (microseconds) 130At the initial activation which you read above she felt no side effects from the therapy. Since she was in a state of depression at that time and she insisted the researchers increase the amplitude because she wanted out of the depressive cycle as quickly as possible. The amplitude was increased to .75 mA at which point she hit the roof. The amplitude was reset to .50 mA and was kept at that setting for a period of time.
For your information you can follow our detailed diary of events presented on the VNSdepression.com website and in particular on the message forum under our personal history topic.
The link to the site is: http://www.vnsdepression.com
Based upon your writings it appears to me you’re off to a good start. As much as one would like to be depression free as quick as possible my experiences would dictate to allow several weeks between adjustments to the parameters to allow the body to tolerate an adapt to the changes. I would also share from experience that it is a good idea when making changes to wait about ½ hour in the doctor’s office to make certain one can tolerate the changes as the prosthesis cycles. There will be times when the side-effects will be noticeable but quite often the sensation abates as the body gets use to the settings. One’s own tolerances should be a guide line. We would then come back a couple months later to try increasing the settings. There were times we attempted increases but my spouse could not tolerate the increase. While increasing one setting we may have also had to lower other settings to eliminate side-effects. Many of these topics are covered in our diary.
Once again, good luck in your adventure and I certainly hope you are part of the percentage that will obtain efficacy long-term from this therapy option.
Warmly,
Herb
VNSdepression.com.
Posted by jerrympls on January 31, 2006, at 23:43:11
In reply to Re: Vagus Nerve Stimulator activated today! » jerrympls, posted by lifetime on January 31, 2006, at 3:02:58
Hi Herb!
The explantation of the device was complete (all wires, coils, etc) and went smoothly. However, somehow during the surgery they knicked my left vocal chord and I had to live with vocal chord paralysis for 5 months before my voice came back. I couldn't get above a whisper! The ENT did an in-office procedure (forgot what it was called) whereby he stuck a syringe through my neck right up against the damaged vocal chord andfilled in the weak spot with some sort of bonding agent. It worked great for a couple days then wore off. But like I said, my voice came back to 100% and everything is fine.
Thanks for askin!
Jerry> Dear Jerry,
>
> I was also curious to read how you are making out. Did your recovery from the explanting of the prosthesis go well? I don’t recall if you indicated whether or not you were able to also have the coils removed from the vagus nerve or were the wires just clipped as close as possible and left in place?
>
> I do hope you’re doing well and that you can just chalk off your experiences to another treatment option in the battle that unfortunately did not bring any relief to you.
>
> Take care of yourself and good luck.
>
> Warmly,
> Herb
> VNSdepression.com
>
> .
>
Posted by lifetime on February 1, 2006, at 3:33:38
In reply to Re: Vagus Nerve Stimulator activated today! » lifetime, posted by jerrympls on January 31, 2006, at 23:43:11
Dear Jerry,
Thanks for your reply. I am very glad to read that you’ve overcome the voice problems and I certainly hope you’re doing well. Thank you for sharing the information. I would like for you to consider posting your experiences relating to the throat problem to the following topic.
Topic: Voice and throat problems
http://vnsdepression.com/forum/viewtopic.php?t=187
There’s a gentlemen Steve from New Mexico who recently received the VNS implant only he experienced a similar vocal cord problem from the implanting procedure and maybe you’re experiences, response and important outcome could be of some beneficial support and assurance to him and his wife.
Your experiences and those of others are invaluable to me in my efforts to disseminate and share the facts with others.
Once again, I wish you and all those who are challenged by this horrific illness a speedy ascent to wellness.
Warmly,
Herb
VNSdepression.com.
Posted by ed_uk on February 1, 2006, at 13:01:54
In reply to Re: Vagus Nerve Stimulator activated today! » juanantoniod, posted by lifetime on January 31, 2006, at 18:23:05
Hi Herb
> The amplitude was increased to .75 mA at which point she hit the roof
In what way?
Ed
Posted by lifetime on February 1, 2006, at 13:51:42
In reply to Re: Vagus Nerve Stimulator activated today! » lifetime, posted by ed_uk on February 1, 2006, at 13:01:54
Hi Ed,
When the amplitude was increased from .50 mA to .75 mA she experienced pain in her neck and the left lower rear quadrant of her jaw each time the prosthesis cycled and activated. Others I have collaborated with have indicated in addition to my spouse’s experiences they have shared chocking and/or gagging sensations, swallowing difficulties, voice problems consisting of lack of volume and raspy speech, sleep disturbances, snoring etc. The potential side-effects from the therapy can be found by reading the patient’s and/or physician’s manuals on the company’s website. In most instances, over time, the side-effects tend to abate.
My wife’s amplitude setting is considerably higher today but it did take a period of time to achieve. Currently my spouse has no sensations from the prosthesis as it cycles 24/7/365.
If anyone is familiar with a “tens” unit for back pain or muscle spasms this may represent a reasonable analogy. As one turns on the “tens” unit the stimulation is relatively comfortable and over a short period of time the amplitude can be turned up and one can still be comfortable but if the amplitude is abruptly increased the resultant affect is discomfort and/or pain.
I hope my response reasonably answers your question.
Warmly,
Herb
VNSdepression.com.
Posted by ed_uk on February 1, 2006, at 14:18:02
In reply to Re: Vagus Nerve Stimulator activated today! » ed_uk, posted by lifetime on February 1, 2006, at 13:51:42
Hi Herb
Thank you for the explanation :)
Regards
Ed
Posted by lifetime on February 16, 2006, at 10:06:22
In reply to Re: Vagus Nerve Stimulator activated today! » lifetime, posted by jerrympls on January 31, 2006, at 23:43:11
To the readership of this forum,
I would appreciate if you folks would lend a hand by taking a moment to read and participate in the signing of the following proactive advocacy petition relating to the discriminatory practices of insurance companies toward mental health treatment options.
http://www.vagusnervestimulator.com/news/petition-feb06.cfm
Warmly,
Herb
VNSdepression.com
Posted by deniseuk on February 17, 2006, at 4:05:46
In reply to Vagus Nerve Stimulator activated today!, posted by juanantoniod on January 31, 2006, at 1:43:20
Hi Antonio,
I was just wondering how the VNS therapy is going?
Denise
Posted by juanantoniod on February 18, 2006, at 1:01:10
In reply to To juanantoniod, posted by deniseuk on February 17, 2006, at 4:05:46
Hi Denise,
In a nutshell, it’s going fine. I’m still at the initial setting of .25 milliamps, but I go in on Monday for an increase, probably up to .50 milliamps. At first, I didn’t feel anything, but then I noticed when I was talking that my voice got hoarse. Initially, it was kind of cool, because I knew it was actually working – stimulating -- but then it started to interfere with making phone calls. I emailed my Case Manager and asked if I should try and speak through the hoarseness, or stop the stimulation with my magnet. She said to try and talk through it as much as possible because it would help my body become adjusted to it. After this, I only used the magnet when absolutely necessary and just worked through the stimulation most of the time. After several days, however, I barely noticed the stimulation any more and now I don’t even know when it’s happening, and my voice doesn’t change at all…well maybe a tiny bit. The ONLY thing that I think I may be experiencing is shortness of breath. At times, I feel like I’ve lost my breath and need to take some deep breaths to catch up. I don’t know if it’s the stimulation doing this, or something else, but because one of the side effects of VNS is shortness of breath, I think this is the cause. Either way, it’s tolerable and as long as my body adjusts to it, like it did to the voice change, I will be fine with it.
I’m just anxious to get my stimulation settings up to the therapeutic level, which is 1.25-1.50 milliamps, and be at that level for 6 months, so I will have some opportunity for effect from this treatment. Once I’ve had 6-12 months at the therapeutic level, I will be satisfied that I got the chance to see what effect it had on me. If you have any other questions, please do let me know.
Best regards,
Antonio
> Hi Antonio,
>
> I was just wondering how the VNS therapy is going?
>
>
> Denise
Posted by Dr. Bob on February 18, 2006, at 3:58:46
In reply to Re: Vagus Nerve Stimulator activated today!, posted by lifetime on February 16, 2006, at 10:06:22
> I would appreciate if you folks would lend a hand by taking a moment to read and participate in the signing of the following proactive advocacy petition
Sorry to interrupt, but I'd like to redirect follow-ups regarding petitions to Psycho-Babble Social. Here's a link:
http://www.dr-bob.org/babble/social/20060212/msgs/610825.html
Thanks,
Bob
Posted by deniseuk on February 21, 2006, at 4:02:31
In reply to How VNS Therapy is Going » deniseuk, posted by juanantoniod on February 18, 2006, at 1:01:10
Thanks Antonio,
How long will it be before you can go up to 1.25 and why can't they put you on that setting now?
Denise
Posted by juanantoniod on February 21, 2006, at 20:02:44
In reply to Re: How VNS Therapy is Going, posted by deniseuk on February 21, 2006, at 4:02:31
Denise,
I understand your questioning the process. From my understanding, this is just the way it's "done". It may be that, like a medication, your body needs time to adjust to it, and the best way to facilitate that is to ramp up the dosage slowly.
I do know from emailing with another person who got VNS the week before me, that she left the office when her device was first activated and couldn't feel anything, so she returned and insisted that they turn her up until she felt it (she went from .25 to .75). However, the next day she had terrible headaches and had to return to the office for the dosage to be dropped back down to .25 (milliamps).
Incidentally, I did not go in yesterday to have the voltage increased because I am having shortness of breath caused by the device, which is bothersome at best. I wanted to wait another 2 weeks to adjust further before upping the dosage. The psychiatrist agreed with me. (We had a phone session/consult. Don't you love the ones that do things so modern? I certainly appreciated not having to go in to his office just to be told what I was going to do anyway.)
So, I guess the dosage can be increased as fast as tolerated, with an interval between increases usually of 2 weeks. This would dictate how long it takes to get up to the therapeutic level (1.25-1.50).
Let me know if you think of anything else.
Take good care,
Antonio
> Thanks Antonio,
>
> How long will it be before you can go up to 1.25 and why can't they put you on that setting now?
>
> Denise
Posted by deniseuk on February 23, 2006, at 10:30:46
In reply to Re: How VNS Therapy is Going » deniseuk, posted by juanantoniod on February 21, 2006, at 20:02:44
Thanks Antonio,
Please keep us updated on your progress.
Kind Regards...Denise
Posted by juanantoniod on May 19, 2006, at 16:10:41
In reply to Re: How VNS Therapy is Going, posted by deniseuk on February 23, 2006, at 10:30:46
Hello,
This is an update for anyone who is interested in VNS therapy. I have posted several times here, late last year and in January 2006 about my experience with VNS therapy.
I was implanted with the Cyberonics VNS Therapy System on January 6, 2006. One of the device setting parameters is how many milliamps the stimulation is. The therapeutic range is 1.25 – 1.50 milliamps. I am at .75 milliamps, and my goal is to get to 1.50 and stay at that for 6 months before making any further increases.
When the device was activated, at .25 milliamps, I noticed a profound hoarseness in my voice when I was speaking while being stimulated. It did not hurt, but I couldn’t speak through it. I used the VNS Therapy Magnet to turn off the stimulation when this happened. Eventually, however, my body got used to the .25mA, and I did not even notice when I was being stimulated. Next, I went to .50mA, had the hoarseness again, which did not go away as easily as when I first started. I also noticed that I had shortness of breath. I reported these to my psychiatrist, and my case manager at Cyberonics, and was told that there was a setting, called the Pulse Width, that could be changed to counteract this.
I went in and had the pulse width changed, but I stayed at .50mA. The change in pulse width helped, as I was able to become accustomed to the stimulation again, and my shortness of breath resolved. Once this happened, I went in to have the stimulation increased again. I went up to .75mA, but left the pulse width the same. After about 2-3 weeks, I was able to “speak through” the stimulation, but still noticed it. I was ready for an increase, but due to scheduling differences with my psychiatrist, I was not able to see him until June. Now that it is approaching 4-5 weeks since the increase, I barely notice when I am being stimulated, but sometimes I *can* tell. It is not bothersome, however, just a little noticeable (a little hoarseness during speaking).
About 3 weeks ago, my partner said he was noticing positive changes in my behavior. This is consistent with what other patients have experienced, as their families have noticed improvements before the patient did. Since then, however, I have noticed a few small improvements in my behavior. For example, instead of letting the mail pile up for 2-3 weeks on the kitchen counter, before moving it to a huge pile on the desk, I go through it and sort it after only a few days. I have also done some cleaning and organizing on my own, which I was not able to do before. I now think about plans for dinner, whereas before I would never think about eating unless my partner brought it up. Even then, I would sometimes not have an appetite for dinner. Now I do.
Although I’m hopefully optimistic that the VNS benefits will continue to appear, I am not resting on that alone. I am pursuing finding another therapist so that I can get into psychotherapy again, and am doing a workbook on reactivation therapy for depression.
If anyone has any questions that you’d like to ask me, I will be following this post, so please reply to this and I will be notified. I hope this has been helpful information to someone out there.
Best wishes,
Antonio
> Thanks Antonio,
>
> Please keep us updated on your progress.
>
> Kind Regards...Denise
Posted by crazy777girl on May 19, 2006, at 22:46:50
In reply to Re: How VNS Therapy is Going, posted by juanantoniod on May 19, 2006, at 16:10:41
Antonio,
Thanks for your update on the progress of your VNS therapy. I am currently going thru the insurance approval stage & am on the implant wait list. I've asked every question imaginable, and then some - but from your perspective - are there any questions you wish you had asked before - or things you wish you'd known prior to having the procedure? I have no qualms whatsoever about having the implant, at this point in my life, where nothing else has worked for me. Any insight would be appreciated. A.
> Hello,
>
> This is an update for anyone who is interested in VNS therapy. I have posted several times here, late last year and in January 2006 about my experience with VNS therapy.
>
> I was implanted with the Cyberonics VNS Therapy System on January 6, 2006. One of the device setting parameters is how many milliamps the stimulation is. The therapeutic range is 1.25 – 1.50 milliamps. I am at .75 milliamps, and my goal is to get to 1.50 and stay at that for 6 months before making any further increases.
>
> When the device was activated, at .25 milliamps, I noticed a profound hoarseness in my voice when I was speaking while being stimulated. It did not hurt, but I couldn’t speak through it. I used the VNS Therapy Magnet to turn off the stimulation when this happened. Eventually, however, my body got used to the .25mA, and I did not even notice when I was being stimulated. Next, I went to .50mA, had the hoarseness again, which did not go away as easily as when I first started. I also noticed that I had shortness of breath. I reported these to my psychiatrist, and my case manager at Cyberonics, and was told that there was a setting, called the Pulse Width, that could be changed to counteract this.
>
> I went in and had the pulse width changed, but I stayed at .50mA. The change in pulse width helped, as I was able to become accustomed to the stimulation again, and my shortness of breath resolved. Once this happened, I went in to have the stimulation increased again. I went up to .75mA, but left the pulse width the same. After about 2-3 weeks, I was able to “speak through” the stimulation, but still noticed it. I was ready for an increase, but due to scheduling differences with my psychiatrist, I was not able to see him until June. Now that it is approaching 4-5 weeks since the increase, I barely notice when I am being stimulated, but sometimes I *can* tell. It is not bothersome, however, just a little noticeable (a little hoarseness during speaking).
>
> About 3 weeks ago, my partner said he was noticing positive changes in my behavior. This is consistent with what other patients have experienced, as their families have noticed improvements before the patient did. Since then, however, I have noticed a few small improvements in my behavior. For example, instead of letting the mail pile up for 2-3 weeks on the kitchen counter, before moving it to a huge pile on the desk, I go through it and sort it after only a few days. I have also done some cleaning and organizing on my own, which I was not able to do before. I now think about plans for dinner, whereas before I would never think about eating unless my partner brought it up. Even then, I would sometimes not have an appetite for dinner. Now I do.
>
> Although I’m hopefully optimistic that the VNS benefits will continue to appear, I am not resting on that alone. I am pursuing finding another therapist so that I can get into psychotherapy again, and am doing a workbook on reactivation therapy for depression.
>
> If anyone has any questions that you’d like to ask me, I will be following this post, so please reply to this and I will be notified. I hope this has been helpful information to someone out there.
>
> Best wishes,
>
> Antonio
>
> > Thanks Antonio,
> >
> > Please keep us updated on your progress.
> >
> > Kind Regards...Denise
Posted by juanantoniod on May 20, 2006, at 1:16:42
In reply to Re: How VNS Therapy is Going, posted by crazy777girl on May 19, 2006, at 22:46:50
Dear "A",
I guess I have no regrets about starting VNS Therapy. If you have any specific questions, I would be happy to answer anything you want to ask.
If I could do it over, I would have had the book, "Out of the Black Hole" sent to me overnight instead of waiting for it. I would also have been a LITTLE more proactive/aggressive in finding a doctor and surgeon, rather than waiting for Cyberonics to do it.
Although my case manager was AWESOME, I would have forced myself to get up each morning and call her EVERY DAY to push my case through. Since I have Medicare, the insurance authorization was not an issue. It was one of finding the right doctors.
OH, now that I think about it, here is what happened, briefly. I was expecting my PDOC to be interested in prescribing and dosing the VNS Therapy, so I waited for my appointment to see him and then found out he had NO interest in it, but would support my getting it and verify my need for it.
So, I would have just called him and asked, then been on the phone every day with Cyberonics and psychiatrists until I found one.
When I did finally find a psychiatrist, I was told that I would work with the surgeon he works with. However, the PDOC that was doing the VNS had never done one before, so he had no surgeon connections. He was supposed to meet with one 2 weeks after my visit with him, because of scheduling conflicts. (He is in Hawaii 10 days each month.) Then I found out that the surgeon he was to meet with had NEVER done ANY VNS implants. I said, "NO WAY!" I wanted an experienced surgeon. So I waited for Cyberonics to find me a surgeon, which they did amazingly fast. The surgeon's office had me set up for the eval one week and the surgery the next, before I even came in, which was to be the next day. That day, the office met in the A.M. and the surgeon's assistant found out that he had signed an agreeement with a new hospital that he had to do all depression VNS implants at the new hospital. So, I had to wait for him to see me at the new hospital office, then that hospital needed to have 2 PDOCS recommending it. My 2 PDOCS counted as 1 (go figure) and they wanted me to see one of their 2 staff PDOCS. Luckily, he was able to see me the day after I met with the surgeon.
Although, in retrospect it went very quickly, if I were you, I would get the PDOC AND surgeon lined up BEFORE you even get approval. If you have insurance and/or can afford it, I would even go have consults with both of them NOW, then when you get insurance approval, all you have to do is get a pre-op visit and labs.
OH, you know what else? I had to have a pre-op H&P (History & Physical) to clear me for surgery. This included a stress EKG, which again, luckily, was done in a day or 2, but if I were you, I would go in NOW to be cleared for surgery and get whatever tests done now that you can. Then when you are finally approved, everyone just needs to "sign off" on it, get some recent labs and then you are good to go.
I know that is a long answer and I didn't expect it to be, but I hope it is helpful.
Let me know if you have ANY follow-up questions as you get into the process. My email is essentialpumper///nospam///at///gmail.com.
Take good care,
Antonio
P.S. The surgeon that did my implant had done "hundreds" for epilepsy. Be sure to find a surgeon that has done a significant amount of these implants. (However many you are comfortable with.) Your Case Manager at Cyberonics should be able to give you some names, telephone numbers, and numbers of surgeries the doctor has done, because they have been doing this for epilepsy for years.
Posted by denise1966 on May 20, 2006, at 3:40:49
In reply to Re: How VNS Therapy is Going » crazy777girl, posted by juanantoniod on May 20, 2006, at 1:16:42
Hi Antonio,
That's great that you've felt some positive results already. Please keep us posted.
Also, I was just wondering what antipepressants you were taking before the implant and if you were still taking them when you had the implant?
Thanks Denise
Posted by juanantoniod on May 20, 2006, at 17:22:01
In reply to Re: How VNS Therapy is Going, posted by denise1966 on May 20, 2006, at 3:40:49
Hello Denise,
Before the implant, the ADs I was taking were: Wellbutrin 300mg, Remeron 30mg, and Paxil CR 50mg.
After the implant, we thought that I could D/C the Remeron because it was making me eat at night after I took it, and interfering with my blood sugar control. (I have diabetes.) Most of the time, however, people with TRD do not D/C any of their meds once they are on the VNS, even after it has started working.
Because of stopping the Remeron, my depression worsened, so I went back on it and I figured if I'm taking it, I may as well take the max, so now I'm at 45mg of Remeron, in addition to Wellbutrin and Paxil.
If that doesn't answer your question, or you have follow-up questions, please post them and I will happily answer anything.
Take good care,
Antonio
> Hi Antonio,
>
> That's great that you've felt some positive results already. Please keep us posted.
>
> Also, I was just wondering what antipepressants you were taking before the implant and if you were still taking them when you had the implant?
>
> Thanks Denise
Posted by HeadCheese01 on June 16, 2006, at 20:22:06
In reply to Re: How VNS Therapy is Going » denise1966, posted by juanantoniod on May 20, 2006, at 17:22:01
Antonio,
I was curious how the VNS therapy is going for you. What settings are you at now? Are you continuing to get better?
I was implanted on 05/04/2006 and activated 05/22/2006. I am currently at .75 milleamps. I must say that the last couple of days at .5 were the best couple of days that I've had in years. Yesterday I was bumped up to .75 and within an hour felt much worse.
Did it ever happen that you felt worse after an increase in your settings?
Hope you're doing well.
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