![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 8 to 32 of 57. Go back in thread:
Posted by jerrympls on November 17, 2005, at 18:09:06
In reply to Re: ''What exactly...?'', posted by juanantoniod on November 17, 2005, at 18:03:40
If you both want more answeres, I'd be happy to help. I was in the trials for the VNS and can tell you everything about the surgery, scaring, posibly side effects with the device, how the device works, where they implant it, etc.
Jerry
Posted by juanantoniod on November 17, 2005, at 22:23:43
In reply to Re: ''What exactly...?'' » juanantoniod, posted by jerrympls on November 17, 2005, at 18:09:06
Thanks, Jerry. Fortunately, I have all the information about those issues that I need. I think what the other poster is looking for is current information about getting this treatment done outside of a study protocol. That's what I expect to share my experiences with.
> If you both want more answeres, I'd be happy to help. I was in the trials for the VNS and can tell you everything about the surgery, scaring, posibly side effects with the device, how the device works, where they implant it, etc.
>
> Jerry
Posted by 4WD on November 17, 2005, at 22:37:59
In reply to Re: ''What exactly...?'', posted by juanantoniod on November 17, 2005, at 22:23:43
It's my understanding that VNS takes months, not weeks, to provide a therapeutic effect. Is this correct?
Marsha
Posted by LifeTime on November 18, 2005, at 12:22:24
In reply to Vagus nerve stimulation, posted by Phil on November 2, 2005, at 11:41:21
To Whom It May Concern:
I would like to take a moment to share a non-commercial proactive advocacy website and message forum for those patients and their support person’s interested in sharing experiences and knowledge as it relates to the VNS Therapy for TRD (Treatment Resistant Depression).
The website is: VNSdepression.com
The link to the site is: http://www.vnsdepression.com
By way of additional information my spouse was one of the earliest study participants in the VNS D-01 study for depression. As with all my sharing of experiences and knowledge I do encourage all to be educated and to make informed and un-coerced medical decisions in collaboration with one’s trusted, caring and compassionate, knowledgeable and licensed health care practitioner(s).
Although the VNS Therapy for Depression is recently approved for Depression the biggest obstacle now facing prospective patients is to know whether or not their respective health care insurance companies will pay for the procedures and follow up care. This is going to take time and is currently being handled by Cyberonics Case Managers on a case by case basis. I also inform patients and/or their support people to contact their local legislators and/or the media to put pressure on the payers if at first they are denied. I learned this from the Epilepsy Community who shared their valuable experiences with me relating to the VNS Therapy for their illness.
I also would like to extend a hello to Jerry and I do hope you are doing well. As with all treatments, there is no way of knowing who will or will not respond to any given therapy. Unfortunately, it is what I refer to as the “Trial and Error Approach to Wellness.” I can only encourage those that are challenged by their illness to not give up hope and to keep trying. As a very long-time support person to my spouse, the VNS Therapy has been nothing short of remarkable for her and others that I have collaborated with for some 6 years.
I thank you for the opportunity to share with you folks on this forum and to answer specific questions from our experiences and knowledge on our website and forum.
Lastly, I wish all the good that you would wish for yourselves.
Warmly,
Herb Stein
VNSdepression.com.
Posted by juanantoniod on November 18, 2005, at 14:02:25
In reply to Re: ''What exactly...?'', posted by 4WD on November 17, 2005, at 22:37:59
This is correct. It's not for acute depression, it's for chronic depression where medications have failed. And, it actually increases in effectiveness over time, so instead of having a medication 'poop out', you get increased benefit.
> It's my understanding that VNS takes months, not weeks, to provide a therapeutic effect. Is this correct?
>
> Marsha
Posted by pseudoname on November 19, 2005, at 15:47:05
In reply to Re: ''What exactly...?'', posted by juanantoniod on November 17, 2005, at 18:03:40
Thanks for the info & offers. My pdoc actually gave me the phone number of our local Cyberonics rep (an RN, I think), so if my current drug thing fails, I may give her a call and have more questions for you guys.
Good luck, Antonio. I'll be following your progress.
Posted by juanantoniod on December 3, 2005, at 2:27:41
In reply to Re: ''What exactly...?'', posted by juanantoniod on November 18, 2005, at 14:02:25
Hello all,
This is an update on my progress in getting VNS Therapy. Briefly, I need to find a psychiatrist in LA that prescribes and works with this therapy, and a surgeon who will implant the device. If anyone has any names, please post them and I will be emailed when you post. If you're not comfortable posting a name and number, please post with that and I will respond to your post with my direct email address.
To bring you up to date, I am considering VNS Therapy for my long term depression. I read the book, Out of the Black Hole, and decided that I probably wanted the therapy. However, I had not yet received the information package from Cyberonics, which includes a video.
I received the package yesterday. While reviewing the video with my partner, about half way through he said, "You're getting that. I don't need to see any more. You need that." This was good to hear because he is more objective about these things than I am. The video and information basically confirmed what I had thought after reading the books and viewing the satellite broadcast online. It also reminded me that the treatment takes up to 6 months to a year to start working. This is fine with me.
So, I saw my psychiatrist today and I am very disappointed. Although he said he supports me getting VNS and would affirm my chronic depression and lack of efficacy of many antidepressant medications, he did not want to participate in the prescribing or management of VNS. I really thought that he would have wanted to learn this new therapy and be on the cutting edge. Had I known he did not, I wouldn’t have waited all this time to see him before seeking other options.
Although I have an email in to my case manager at Cyberonics, if I could get ANY leads on psychiatrists or surgeons in the Los Angeles area, including Beverly Hills, Glendale, and Pasadena, before Monday, I could get a head start on finding a doctor.
Any help is appreciated. Thanks for your support.
Antonio
Posted by jerrympls on December 3, 2005, at 2:43:06
In reply to Anyone know of a PDoc in LA for VNS Therapy?, posted by juanantoniod on December 3, 2005, at 2:27:41
> Hello all,
>
> This is an update on my progress in getting VNS Therapy. Briefly, I need to find a psychiatrist in LA that prescribes and works with this therapy, and a surgeon who will implant the device. If anyone has any names, please post them and I will be emailed when you post. If you're not comfortable posting a name and number, please post with that and I will respond to your post with my direct email address.
>
> To bring you up to date, I am considering VNS Therapy for my long term depression. I read the book, Out of the Black Hole, and decided that I probably wanted the therapy. However, I had not yet received the information package from Cyberonics, which includes a video.
>
> I received the package yesterday. While reviewing the video with my partner, about half way through he said, "You're getting that. I don't need to see any more. You need that." This was good to hear because he is more objective about these things than I am. The video and information basically confirmed what I had thought after reading the books and viewing the satellite broadcast online. It also reminded me that the treatment takes up to 6 months to a year to start working. This is fine with me.
>
> So, I saw my psychiatrist today and I am very disappointed. Although he said he supports me getting VNS and would affirm my chronic depression and lack of efficacy of many antidepressant medications, he did not want to participate in the prescribing or management of VNS. I really thought that he would have wanted to learn this new therapy and be on the cutting edge. Had I known he did not, I wouldn’t have waited all this time to see him before seeking other options.
>
> Although I have an email in to my case manager at Cyberonics, if I could get ANY leads on psychiatrists or surgeons in the Los Angeles area, including Beverly Hills, Glendale, and Pasadena, before Monday, I could get a head start on finding a doctor.
>
> Any help is appreciated. Thanks for your support.
>
> AntonioIf I may say - I was involved in the FDA study for VNS - about your doctor not wanting to take part in the treatment part of the VNS is probably a good thing because he's not qualified to do so. You need to find a doctor who knows how to administer the treatment, etc. It involves a computer and a wand that reads and sets the settings within the device. Only someone knowledgeable in this would be right. There are many setting variables and it can take a while to fine tune them to you. If you need help finding a qualified doc. call Cyberonics - they can help a lot.
Jerry
Posted by LifeTime on December 3, 2005, at 10:49:40
In reply to Anyone know of a PDoc in LA for VNS Therapy?, posted by juanantoniod on December 3, 2005, at 2:27:41
Antonio (juanantoniod),
I correspond with the father of a VNS patient living in Los Angeles and I shall try to obtain the information you seek.
As an aside, as a long-time support person and health care for my wife I want to share a quick story based upon something you have written. We needed a safety net for my spouse close to home. She was a study subject for the VNS Therapy in Charleston, SC at MUSC and we live in Florida and needed a doctor close to home. This was all prior to the FDA approval for the therapy so we were searching for a psychiatrist who would be interested. A friend recommended a doctor who she was extremely happy with. We made an appointment. We went to the office and my wife spent ¾ of an hour filling out the psych questionnaires before we got to see the doctor. Finally we went into his office and we both sat down. Before he started I explained we were looking for someone who would be interested in learning about the Cyberonics prosthesis and attending to my wife’s needs. He looked puzzled and said he didn’t understand. I explained it was the VNS Therapy for Depression and that she was a study subject. He said, “Oh! I heard about it and I have no interest.” I looked at my wife and I said, “Honey, let’s go.” We got up and walked out of the office.
It was the shortest meeting we ever had with any physician. It was under 3 minutes. When we got to the car I said to her, “I was appreciative of the fact that he was honest and didn’t waste our time, but in a million years I would never want any doctor treating you who was not interested in learning something new to aid his patients. I also could not believe as a psychiatrist that he didn’t have enough intelligence or moxie to say he was too busy at moment with patient loads etc or to make some other excuse.”
My personal opinion based upon your experience; find a trusted, compassionate and knowledgeable psychiatrist willing to work hard for your wellness. Be careful when choosing a surgeon, make sure you find one who besides knowing how to open the patient is also interested and learned how to close the patient (joke) but I hope you understand my drift. If one is going to be a doctor then one should continually learn all that is available in the specialty to insure patient wellness.
Good luck. If I may be assistance in sharing experiences, knowledge or directing anyone to information relating to the subject y’all knows where to reach me.
Warmly,
Herb
VNSdepression.com.
> Hello all,
>
> This is an update on my progress in getting VNS Therapy. Briefly, I need to find a psychiatrist in LA that prescribes and works with this therapy, and a surgeon who will implant the device. If anyone has any names, please post them and I will be emailed when you post. If you're not comfortable posting a name and number, please post with that and I will respond to your post with my direct email address.
>
> To bring you up to date, I am considering VNS Therapy for my long term depression. I read the book, Out of the Black Hole, and decided that I probably wanted the therapy. However, I had not yet received the information package from Cyberonics, which includes a video.
>
> I received the package yesterday. While reviewing the video with my partner, about half way through he said, "You're getting that. I don't need to see any more. You need that." This was good to hear because he is more objective about these things than I am. The video and information basically confirmed what I had thought after reading the books and viewing the satellite broadcast online. It also reminded me that the treatment takes up to 6 months to a year to start working. This is fine with me.
>
> So, I saw my psychiatrist today and I am very disappointed. Although he said he supports me getting VNS and would affirm my chronic depression and lack of efficacy of many antidepressant medications, he did not want to participate in the prescribing or management of VNS. I really thought that he would have wanted to learn this new therapy and be on the cutting edge. Had I known he did not, I wouldn’t have waited all this time to see him before seeking other options.
>
> Although I have an email in to my case manager at Cyberonics, if I could get ANY leads on psychiatrists or surgeons in the Los Angeles area, including Beverly Hills, Glendale, and Pasadena, before Monday, I could get a head start on finding a doctor.
>
> Any help is appreciated. Thanks for your support.
>
> Antonio
Posted by LifeTime on December 3, 2005, at 18:27:14
In reply to Anyone know of a PDoc in LA for VNS Therapy?, posted by juanantoniod on December 3, 2005, at 2:27:41
Antonio,
Again, in response to your question I would like to pass along the following two names.
I am informed that Dr. Mark Zetin, Psychiatrist, Garden Grove has been trained by Cyberonics. (949) 760-8103
I am also informed that Dr. Richard Kim, Surgeon, Newport Beach has done a number of VNS implants for Epilepsy which is no different for the Depression patient. (949) 760-2002.
I hope the following information is of some assistance to you.
Warmly,
Herb
VNSdepression.com
.
Posted by juanantoniod on December 6, 2005, at 23:59:15
In reply to Re: Please keep us posted!, posted by juanantoniod on November 17, 2005, at 2:39:58
Hi all,
In my last post, I was distraught because my psychiatrist, who I had awaited to see for approval of and agreement to manage VNS Therapy for Depression, had said that he was not interested in “wasting his time” learning anything from “Barbies in suits” (drug reps). So, Friday night, I emailed my Case Manager (“CM”) at Cyberonics with the names of some of the nearby cities in Los Angeles.
In the meantime, Herb, was kind enough to post the name of a psychiatrist and surgeon that were a bit too far from me, as I take public transportation.
So, I waited to hear from my CM and had not heard from her by the time I woke up on Monday. I called her and she was just getting the list together to email back to me, so she gave me the names over the phone (and also emailed them after). Anxiously, I called the first one on the list, a doctor in Glendale. I answered the usual standard new patient questions over the phone and told them that I have “Medi-Medi” (Medicare with Medi-Cal (Medicaid in most states). The doctor’s assistant said he didn’t usually take this and she would have to ask him.
By his grace, the doctor agreed to take what Medicare paid and write off the rest, since they couldn’t bill me for this because I am on Medi-Cal. I was very grateful and said thank you. The assistant told me that I was to come in at 12 noon on Tuesday. I verified the office address with her, then hung up the phone.
Today, I arrived at the office very early because I didn’t want to be late, as I was relying on public transit. It was a good thing that I was early because I had to fill out the usual litany of forms regarding health and mental health history. I completed these forms with the help of my partner, and waited…patiently.
Then I started to worry. Would this be a doctor that wanted me to endure yet another trial of useless medication? Was there anything new on the market that I did not know about and had not yet tried? I did not think so. I waited…
Eventually, I was called in and greeted by a warm, smiling man with dazzling Aqua eyes. I told him why I was there and his response hinted that he was aware who I was. We discussed the therapy in detail; I told him all of what I had heard and read about it and he was impressed with how much I already knew. He proceeded to fill out a form which assessed my candidacy for the treatment. I believe this form is the back of Cyberonics’ IVEA form. At the end of the form, he announced that I was definitely a candidate for the procedure and asked if I had any questions.
I presented my concern about vocal cord paralysis and he said he had never heard of that happening, except perhaps when the vagus nerve was being stimulated. That, I already knew. My partner expressed his concerns and feelings and the doctor answered those as well.
We concluded by discussing where I might have the surgery and he said that Cyberonics would be in touch with me to arrange the next step. I got home and emailed my CM at Cyberonics and am now awaiting the next step.
For what it’s worth, I want to have this done this month, if possible, so I am eager to get started right away. I just got my issue of Cyberonics’ Connections Newsletter and read a further study that showed the efficacy of this procedure. I also read a patient’s perspective that said she had improvement by 10 weeks, but that her family noticed it even before then, at 6-8 weeks. She says that even after 2 years, she continues to improve every day.
I will continue to keep you posted along my journey. If there are any specific questions for me, please post them here.
Best regards,
Antonio
Posted by pseudoname on December 7, 2005, at 7:01:52
In reply to Keeping you posted about VNS Therapy, posted by juanantoniod on December 6, 2005, at 23:59:15
Posted by SLS on December 7, 2005, at 7:51:46
In reply to Keeping you posted about VNS Therapy, posted by juanantoniod on December 6, 2005, at 23:59:15
Hi.
Thank you for keeping us posted. I hope your careful consideration of VNS proves rewarding.
Where can I sign up for the newsletter you mentioned?
Is there a phone number at Cyberonics that is best to use to begin the treatment process?
Thanks.
- Scott
Posted by LifeTime on December 7, 2005, at 8:15:26
In reply to Re: Keeping you posted about VNS Therapy, posted by SLS on December 7, 2005, at 7:51:46
Scott,
You can find substantial information on Cyberonics Website:
The telephone number you are asking about is:
1-877-669-4867
Good luck.
Warmly,
Herb
VNSdepression.com.
Posted by SLS on December 7, 2005, at 9:01:35
In reply to Re: Keeping you posted about VNS Therapy, posted by LifeTime on December 7, 2005, at 8:15:26
Posted by juanantoniod on January 9, 2006, at 1:13:37
In reply to Keeping you posted about VNS Therapy, posted by juanantoniod on December 6, 2005, at 23:59:15
Hello everyone,
This is an update to my experience getting VNS therapy surgery for depression. Because it has just been approved by FDA, and there are very few people with actual experience getting this done outside of the study protocol, I am posting here so that you will know what I went through, and hopefully help others prepare for what to anticipate.
So, here’s the update:
It is Friday, January 6, exactly 1 month after my last post. Today I finally had the VNS therapy implant surgery!!! From what my Case Manager (“CM”) at Cyberonics tells me, this has been very fast progress compared to what others have gone through.I last posted on Friday, December 6 that I had just met with the psychiatrist who does VNS in my area (he is in Glendale) and he had agreed that I needed VNS and qualified under the FDA guidelines (for treatment resistance, as evidenced by failure of several medications for depression). That Friday, I had gotten home too late to find a surgeon, so I was stressing about finding a surgeon in my area to do the surgery. After the weekend was finally over, I spoke with my CM and the psych doctor’s office and found out that he had made an appointment to meet with a prospective surgeon on December 19. Although this was another wait, I resigned myself to the fact that it WAS happening so this was better than not happening at all.
However, I continued to ask questions and do research and eventually discovered that this prospective surgeon had not done ANY VNS implants. I was like, “I don’t think so! I’m NOT going to be his first!” So, my CM proceeded to find other options and eventually found Dr. Adam Mamelak, a surgeon out of City of Hope/Huntington Memorial (Pasadena) that had done “hundreds” of these implants for epilepsy. I spoke with Maria, his assistant at Huntington. Out of this entire experience, she was definitely the highlight. I speak with many medical providers assistants and she is one of the most outstanding that I have ever dealt with. In fact, she had the consult scheduled for that week and the surgery tentatively scheduled the week after. Unfortunately, I was later told, Dr. Mamelak could not do the VNS surgery for depression at Huntington due to his new contractual relationship with Cedars Sinai Medical Center. So, I was referred from the Huntington practice to see him instead at Cedars. I had an appointment scheduled for December 22, but got sick and was unable to make it. I rescheduled for December 29.
On December 29, I met with Dr. Adam Mamelak at Cedars. From my research, I already knew that he had done his undergrad at Tufts, Medical School at Harvard and Internship/Residencies at UC San Francisco. He was very presentable and confirmed that he had done at least 200 of the surgeries for epilepsy. He agreed to do the surgery for me based on my psychiatrist’s recommendation. However, as I later discovered, there would be some Cedars Sinai “hoops of fire” to jump through before I could get the surgery.
One of these “hoops” was to be evaluated by a Cedars psychiatrist to make sure I met the qualifications for the surgery. Luckily, the doctor performing this evaluation made himself immediately available to me. On Friday, December 30, I went in to him expecting the same questions about previous treatments tried and failed, and what my current condition was. In addition to asking these, he said he needed to speak with my treating psychiatrist to confirm what medications and dosages had been tried. I gave him my psychiatrist’s name and number and called my Pdoc to give him authorization to speak with this evaluator. In the evaluation appointment, which took over 2 hours, the doctor spent a lot of time asking me about things which seemed irrelevant to the surgery qualification. In addition, he performed 3 psychometric evaluations, including the Hamilton, and the “MINI”. At the end of the appointment, I asked him why he had done these, and he said that he needed to rule out any comorbidities, such as alcohol or drug abuse, and also determine that I was not currently suicidal. (In which case ECT would have to be recommended first.) At the end of the appointment, he was saying things like, “WHEN you have the dose adjustments, you will feel…”, so I was fairly certain he was going to recommend the surgery, but I was still worried that he wouldn’t.
In addition to this, I had to have the standard general anesthesia surgical clearance. I went to my Primary Care doc and he did the requested pre-op tests, including an EKG. Because the EKG showed changes from the previous EKG, he wanted me to see an outside cardiologist for surgical clearance. With my surgery only 3 days away, scheduled for Friday, January 6, I saw the cardiologist for surgical clearance on Tuesday, January 3. I started to get nervous and think that I should have just called my old cardiologist, who did the previous EKG, and hope that he would just “sign off” on the clearance. I resisted this urge and instead saw the new cardiologist recommended by my PCP. This doctor took my history and physical and then did a stress EKG in his office. However, I was unable to walk enough on the treadmill to get my heart rate high enough to do a proper test. This is because the medication I am already on lowers heart rate, and I am generally out of shape. The doctor and I agreed that these were the problems with the test they tried to perform. I told him that I had an adenosine thallium (chemical stress test) done around the same time as the old EKG.
Of course, he wanted to see the report from this test, so he said he would wait and see other patients while I phoned my old doctor’s office and asked them to fax the report over. We received the report shortly thereafter and it showed a possible slight abnormality. The doctor said if this was the only thing it showed, then he would clear me for surgery. However, because the test was almost 3 years old, the possible abnormality could have worsened and he needed to know for sure. He presented my options, which included angiography or a repeat adenosine thallium. I chose the adenosine thallium and decided to have it done at Cedars as well. Luckily, they were able to get me in on Wednesday (with only 2 days left to surgery day).
On Wednesday, I went in and had the test done. I told everyone that I came in contact with at the imaging center that it was for clearance for surgery on Friday and was a “stat” order. They all seemed to understand this, and I was told when I left a few hours later that my doctor would have a report in just a couple of hours. Shortly before 5, the cardiologist I had seen on Tuesday called me and said it was normal and he was going to clear me for surgery. NOW, I was finally excited and relieved. This was actually going to happen.
On Thursday, I made some follow-up calls to my PCP’s office and the surgeon’s office, just to make sure I was absolutely cleared for surgery the next day. I also saw my pain management doctor and got my pain medications filled. Pursuant to my prior conversation with the surgeon, I also asked him to call in any post-op medications he would be prescribing so I could pick them up, rather than having to go right after the operation. He prescribed Keflex and I got that as well.
Because my surgery was at 7:15 a.m., I had to be at the hospital at 5:15, and leave my house by 4:15. I was also NPO (nothing to eat or drink) after midnight. I got to the hospital today at 5:10 and of course, was told to wait for about 30 minutes before they would be registering me, as well as all the other people waiting. Fortunately, I would later find out, I was the second case for the day, so there would be very little waiting after this. Eventually, they called my name and that of the first case and together we went with our significant others to the surgery floor. I registered, signed my life away and waited to be called into the pre-op area. Once there, I was instructed to put on the hospital gown and place my clothes in a plastic bag. I did so and waited. The anesthesiologist came and was able to place an IV with only 2 tries. I asked him my questions and told him my significant medical history as he was doing this. He seemed very competent and also told me that they use a sedation monitor (the BIS), so I was confident that I would be completely sedated. He gave me some Versed to start the sedation process, then left me to wait.
At about 7:30, I was taken in to the OR, where I greeted my surgeon. He had the VNS device on a table with the programming wand over it. I had not seen the wand in person until then, so that was cool. He told me he was interrogating the device. The anesthesiologist told me he was starting the sedation and that’s the last thing I remember. I awakened later in the post op area and asked for water and pain medication. As the doctor had told me, I felt like someone had punched me very hard in my left chest/neck area. I was given some Dilaudid via IV and gratefully drank some water. About 45 minutes later, I was still feeling a lot of pain, so I asked for more Dilaudid and they gave me some. Although I was still feeling a lot of pain after that injection, I agreed to go to the recovery area to prepare to go home. (At this point, all I wanted to do was lay down on a soft, comfortable bed!)
I went to the recovery are and my partner was allowed to come into the area with me. They said that I had to eat something and keep it down, to show that I was not too nauseous, before they would release me. I did this and they said they would release me as soon as my pain was under control. Since I knew I had pain medication at home that I could take, I told them that my pain was down to a 3 and they agreed to release me. We called our friend and he said he would come get me so that I did not have to deal with a taxi again. Within 45 minutes, our friend arrived and I was taken by wheel chair to the discharge area, where our friend brought his car and I got in.
I got home and took as much pain medication as I could and a couple of hours later was still in a lot of pain. I called my doctor’s office and spoke with the nurse, who told me that the pain was normal, unless I was unable to breathe or swallow. Since I could do these things, albeit painfully, I figured I would just bear with it. At this point, 7 p.m. on day of surgery, my pain is about a 4, controlled by Oxycontin, Percocet and Ibuprofen. Although the pain is a little uncomfortable, as long as it gets better, I will be okay with it.
At this point, I have to say that what I went through over the past month or so, has been worth it for the hope of some possibility of improving my depression. I know that it can take 6-12 months to see great improvement, so I will be patient. However, I’m hopeful that, like some patients, my friends and family will notice a slight change in 6-8 weeks.
In 2 weeks, I will see the psychiatrist to have the device activated. I will post then to let you know what that is like. In the meantime, please feel free to post any specific questions you have, and I will do my best to answer them. I’m doing these posts in hopes that it will help someone else find out about and get to try this remarkable new therapy, so I am open to answering any questions that will help you with this process.
Best regards,
Antonio
Posted by pseudoname on January 9, 2006, at 3:16:34
In reply to January 2006 Update on VNS Therapy, posted by juanantoniod on January 9, 2006, at 1:13:37
Posted by lifetime on January 9, 2006, at 9:05:34
In reply to January 2006 Update on VNS Therapy, posted by juanantoniod on January 9, 2006, at 1:13:37
Antonio,
Thanks for your very detailed sharing. I do hope your pain abates and that you heal quickly and all goes smoothly from here on in.
The pain you are experiencing is again a reminder which I would like to share with the readership. Since everyone is unique the experiences encountered will also be unique from individual to individual. My spouse has received two implants to date, one as an initial study subject back in December of 1999 and a replacement of the pulse generator in January 2005 as part of EOS (End of Service). As part of the study protocol she was required to stay overnight in the hospital but upon leaving the next day she took nothing more than Tylenol and her surgical recovery was uneventful. The replacement surgery only required the one incision utilizing local anesthetic as opposed to the two incisions during the initial implanting and anesthesia and she was in and out of the hospital the same day and we were out to dinner and a movie that evening.
I am aware of individuals who have had a rough go from the surgery so the important point to remember is that individuals respond differently to medications and so too will they respond differently to surgery.
Once again, I do hope all goes well and that this venture with VNS Therapy brings you the wellness you seek.
Warmly,
Herb
VNSdepression.com.
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.
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