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January 2006 Update on VNS Therapy

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,





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