![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 25 of 57. This is the beginning of the thread.
Posted by Phil on November 2, 2005, at 11:41:21
Does anyone have any experience with this treatment?
I know we've talked about it on this board for years but now that it's been suggested to me that I consider it, I'd like any input that can be offered.
Thanks. hope this doesn't get moved to Alternative.
Phil
Posted by juanantoniod on November 12, 2005, at 5:07:39
In reply to Vagus nerve stimulation, posted by Phil on November 2, 2005, at 11:41:21
Well Phil, it's actually here!!! I'm so excited because I have just learned about it's availability and am in the process of applying to start to get this amazing new treatment.
Cyberonics is one company that makes the VNS unit and they have a Website at www.vnstherapy.com. If you click on the link for providers, you can actually view an hours long satellite broadcast (broken up into manageable segments) that was aimed at providers. I liked it because I'm used to getting information at a higher level, and it even included one patient's statement about her experience.
I will keep everyone here posted as I progress through the treatment algorithm and let you all know what happens.
Also, there is a book about this therapy from a patient's perspective, called, "Out of the Black Hole". I ordered it with 2 day shipping, so I'll have it by early next week.
Take good care,
Antonio
> Does anyone have any experience with this treatment?
> I know we've talked about it on this board for years but now that it's been suggested to me that I consider it, I'd like any input that can be offered.
> Thanks. hope this doesn't get moved to Alternative.
> Phil
Posted by pseudoname on November 12, 2005, at 8:07:31
In reply to Re: Vagus nerve stimulation, posted by juanantoniod on November 12, 2005, at 5:07:39
Posted by jerrympls on November 16, 2005, at 0:19:52
In reply to Vagus nerve stimulation, posted by Phil on November 2, 2005, at 11:41:21
> Does anyone have any experience with this treatment?
> I know we've talked about it on this board for years but now that it's been suggested to me that I consider it, I'd like any input that can be offered.
> Thanks. hope this doesn't get moved to Alternative.
> PhilI was in the final trials for VNS therapy. I know all about it. Unfortunately it did not work for me - but I knew some of the other study participants for whom it worked very well. Feel free to babblemail me for more info.
Jerry
Posted by juanantoniod on November 17, 2005, at 2:39:58
In reply to Please keep us posted! (nm) » juanantoniod, posted by pseudoname on November 12, 2005, at 8:07:31
What exactly would you like to know?
Posted by pseudoname on November 17, 2005, at 8:05:41
In reply to Re: Please keep us posted!, posted by juanantoniod on November 17, 2005, at 2:39:58
> What exactly would you like to know?
Just the sort of stuff you seemed to be offering, to the extent that you're comfortable sharing your actual experience as you go through the process.
•What's the intake interview like?
•What do they tell you about qualifying for VNS?
•Do they require brain scans, EEGs, etc?
•If any docs/family members disagree about you having it, what do they say?
•If you raise objections/concerns with the VNS people, how do they respond?
•Do they let you talk to patients who've had it done?
•Any problems with your provider paying for it?
•If you do get it done, how big a disruption was the surgery/recovery?
•If you have complications, how are they dealt with?
•And mostly (hopefully!) DID IT WORK?I've had 2 pdocs in 2 weeks suggest it, but I decided against it for now, mostly because of the remarkably low remission and response rates for an expensive, permanent procedure that has significant complications and leaves scars and often still requires antidepressant meds. And has an as-yet-unknown rate of poop-out. I wish they could better tell who will/won't respond.
But I'm not ruling it out.
Posted by juanantoniod on November 17, 2005, at 18:03:40
In reply to ''What exactly...?'' » juanantoniod, posted by pseudoname on November 17, 2005, at 8:05:41
I'll answer the questions that I know the answers to now, and keep you posted as I get new information, okay?
> •What do they tell you about qualifying for VNS?
Because I am on Medicare, there is no qualifying for VNS. Because it is no longer experimental, and has been approved by FDA for the treatment of chronic depression, having that condition along with a bunch of failed medication trials makes me eligible. If you had a different payor, they would possibly have other requirements, such as a second opinion, pre-authorization, etc.
> •If you raise objections/concerns with the VNS people, how do they respond?
I know this does not specifically answer your question, but from what I can tell, this organization, Cyberonics, is a VERY professional device provider. I have dealt with other device providers because I am on an insulin pump, and not encountered the level of professionalism that I have experienced already in my limited contact with Cyberonics.
> •Do they let you talk to patients who've had it done?
I haven't asked them to do this because I am satisfied, based on the data, that there is a reasonable chance of improvement with little risk to me. I HAVE seen a 'testimonial' from "Karmen", a patient, who spoke at the satellite conference that I viewed through the Internet by accessing it through the professional side of the Cyberonics Website. I have also read the book, Out of the Black Hole, by Charles Donovan, a patient who got VNS as part of the study. From what I can tell, both of them had nothing but positives to say and would do it again if they had the chance.
> •Any problems with your provider paying for it?
They have something like a 98% reimbursement rate for this procedure. Because it has already been used for many years in the treatment of epilepsy, they are experienced at getting payors to pay for it and payors are used to seeing the codes for the procedures. The procedure codes are the same for both, only the diagnosis code is different.
> I've had 2 pdocs in 2 weeks suggest it, but I decided against it for now, mostly because of the remarkably low remission and response rates for an expensive, permanent procedure that has significant complications and leaves scars and often still requires antidepressant meds. And has an as-yet-unknown rate of poop-out. I wish they could better tell who will/won't respond.
>
> But I'm not ruling it out.You should call Cyberonics and speak with someone there and ask them to send you a package of information. This would give you an idea of the company's professionalism, and let you see some further information about the procedure.
I will keep you posted with any new developments.
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.
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