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Re: Experiences with Albee/Sinervo in Atlanta?From: anonymous (anonymous@obgyn.net)Thu Jul 31 01:06:42 2008
At Mon, 6 Feb 2006, Angie wrote: > >At Sun, 5 Feb 2006, Barb wrote: >> >>I would like to hear from those who have gone to Atlanta to have surgery >>at CEC with these doctors. What was your experience? What was your >>outcome? >>I am in a situation where I need to make a decision about a surgery >>rather quickly. Everything I've heard so far sounds like they are very >>good at dealing with complicated endo/adhesion issues. >>Feel free to e-mail me offline if you prefer. >>Thanks >>Barb > >Barb...I emailed Heather a couple weeks ago (CEC) and asked her for >letters from previous patients at the CEC and here are 2 letters she >sent to me. Hope it helps. > >Hi Angie! > >I’m excited for you! =) I am hoping that your surgery will be a success! >=) > >We don’t have postings on the website per se, but here are two letters >from two of our references, and is attached…I hope you find them >helpful! =) > >Heather > >My name is Tracey. In short, I can tell you that it's changed my life >amazingly for the better after having the surgery > >the summer of 2004. I've had endo for over 20 years most likely (I'm >pretty sure I had > >it in high school even). There's so much to talk about, & I can't spend >alot of > >time today, (I'm not the fastest typer!)...but I will say that I had had >at least > >5 surgeries prior...some just laproscopic, some laparotomies, over the >past > >15 years, & they didn't really do the job. I also had endo in my >bowels, intestines, > >around my kidneys, my appendix, my bladder, & of course around both >ovaries. > >I could barely move anymore with out feeling discomfort & like my >insides were stuck > >together....& in reality they were! I had been to different doctors who >told me to just > >get a hysterectomy...that it was my choice to live in pain the way I >was....I left their > >offices in tears...anger & frustration. > >The worst part of all for me was the fact that the endo had literally >cut off part of > >my digestive system, so every time I ate anything...esp. bread or >cheese, pasta or > >heavy foods like meat, I'd feel overly bloated & pain, & it took up to a >week at times > >to digest food. > >I had seen the website for the Center For Endometriosis Care, & wrote to >Dr. > >Ken Sinervo about my situation; asking how much it would cost...that was >my > >main concern. He got back to me, & we discussed things, & I had a cat >scan > >of my insides (after just going to the er with a kidney infection...2nd >in a year).... > >then sent him the films, along with my medical history & records. > >They determined I was a good candidate for surgery, & suggested that I >had a > >bowel specialist work along side Dr. Sinervo & Dr. Albee. > >This is also another thing that the regular gynocologists would not >usually do > >& if they ever would come across endo on the bowels, they'd shy away >from > >removing it, as it's a delicate procedure that requires a great deal of >knowledge > >in that specific area. I had doctors tell me before that they wouldn't >touch my > >bowels with a ten foot pole...that it wasn't something that they'd be >comfortable > >doing. > >When I had the surgery this last time, they had to do a bowel resection >& take > >out at least 6 inches of knotted & deformed bowel area. They also took >out my > >appendix, my left ovary, & the whole inside layer of my body cavity, of >which had > >years & years of endo & adhesions that had collected & never been >properly > >removed before. > >They treat the endo like cancer in that they cut it out with special >lasers that don't just > >cauterize the bad endo cells (that bleed every month in the wrong part >of your body)... > >but they take them completely out of your body. The mainstream method >of surgery > >has been to just zap them with lasers, but all that really does is embed >them further > >into the tissue that the cells are on....then in time the cells will >again bleed every month > >but now deeper into the tissue of the organs they're on. > >I had a stage 4 case...I don't know that your surgery would ever be as >heavy duty as what > >I needed, but I wish I'd found out about the Endo Center & Dr. Albee & >Dr. Sinervo's new > >techniques years ago. I'm almost 42, & it's pretty certain that my >chances of getting > >pregnant are gone. I waited too long for various reasons, but if you're >even remotely > >considering having children, & have endo....don't put it off if you can. > >Although, I'd have the surgery first, so you're not suffering from the >disease while you're > >pregnant, or after you have kids & then feel yucky all of the time. > >Ok...I've gone on way too long! The bottom line is, I can eat whatever I >want for the first time in years & years, & I've even > >been going out dancing almost every weekend because I feel soooo much >better! > >Also, the cost of the surgery was way less than I expected. My health >insurance did cover the cost of the hospital stay, > >which was the most expensive part, & Ijust had to pay 1/2 of the >doctor's bill up front, that of which I put on a credit card. > >Did I mention that it's the best thing I ever spent money on in my life! > >Oh & Dr. Sinervo was amazing to me...he held my hand & helped me to >relax right > >before I was put under, then was there after the surgery, & kept in >touch when I needed > >to ask questions. I did have a complication after the surgery, but that >was do to my > >specific bowel resection that the other Dr. had done, so when he had to >redo some > >of that area again, Dr. Sinervo came in on his day off to be there >during the 2nd surgery. > >Again...this was a rare situation, that I almost forgot to mention, >because in the grand > >scheme of things....all I ever think about is how wonderful I've felt >since the surgery... > >not counting the 4-6 week recovery period of course! > >I hope you can go for the surgery & realize you don't have to live in >discomfort anymore. > >Sincerely, > >Tracey > >My name is Heather, and I travelled to Atlanta from central Illinois to >have surgery with Dr. Albee and Dr. Sinervo the day before >Thanksgiving 2005. It is one of the very best decisions I have ever >made. > >This email is very long, but I wanted to give you as complete a picture >of my experience as possible. > >When I first learned about LAPEX surgery approximately a year >beforehand, I believed it was the answer I'd been seeking. Removing the >disease made *sense*, unlike almost everything else I had been told >would help. All I needed was a doctor who knew what to do ... As you >probably know, there are several (though not enough) doctors in the US >who do this surgery, but unless you're fortunate enough to live within >an hour or so of one of their offices, choosing one surgeon from the >group is a bit difficult. > >For a number of reasons, I decided Dr. Albee and Dr. Sinervo were my >top choices. First, over many months of researching these doctors and >asking other women about their experiences, I had not come across even >one negative review of the CEC. For the other doctors I was selecting >from, this was not the case -- either there was not enough information >available about certain doctors, or I found negative reports ranging >from what I considered to be very minor issues to some quite major >problems. Now, I don't mean to imply that I found a lot of negative >information about any one of the endometriosis experts -- just that the >complete absence of negative reports about the CEC doctors stood out. > >Second, in my direct dealings with several doctors' offices, I felt I >got the most honest, most complete, and most helpful answers from the >CEC. I felt very confident that the CEC would help greatly with any >insurance issues, their correspondence (including Dr. Albee's initial >letter to me after he reviewed my records, and later my operative >reports) was easy to understand without being patronizing, their focus >was on my health rather than on a dollar value, and they were confident >they could help me without seeming at all arrogant or promising more >than I realistically believed they could deliver. > >Their expectations were much the same as my own, and to explain this, I >need to mention a brief experience with someone on a non-CEC doctor's >staff: I don't think this woman had any medical training, though I >didn't ask, but she told me that my problems had been going on for so >many years that they could not possibly help me in "just one" surgery. >That was before I had even sent them my medical records, and as a result >of her comment, I never did send my records to that doctor. I simply >felt her comment was inappropriate without a complete record review -- >and without her even consulting the surgeon himself. I had already >begun to think that this particular expert, while beloved by the >patients who had gone to him, was probably not the right doctor for me >and this incident cemented my opinion. > >Ultimately, I ended up choosing between the CEC and one other surgeon. I >sent both the CEC and the other surgeon my records to review. Dr. Albee >reviewed my records for the CEC, and I was incredibly impressed by his >review. He had noticed *everything* I had hoped he would and addressed >each symptom or circumstance in his review. The other doctor missed -- >or neglected to mention -- certain things. Dr. Albee even answered >questions I had jotted in the margins of certain reports within my >records, and every word he wrote was written in such a way that it was >an extremely useful document for presenting to my doctors here, as well >as to my insurance company. > >The CEC's success rate with this type of surgery is also the best out >there -- by quite a margin. An 80% or better success record eradicating >endometriosis and a 90% or better record of significantly relieving pain >long-term ... I am *not* a gambler, but those odds were too good for me >to resist. It was a bet I was not only willing to make, but one I would >have always questioned myself about if I hadn't tried. > >So ... I got a bit lucky in that my husband started a new job last >September, which meant we got to choose new health insurance. We chose >Blue Cross/Blue Shield, and from there, things got much easier than they >had been for me. Previous to that, I had been fighting our asinine HMO >with all my time and energy -- I'm not willing to say I was "losing" >because I was *not* going to accept being told, "No," but I was >definitely spinning my wheels trying to communicate with people whose >only interest is what's in their own pockets. Anyway, I scheduled >surgery as soon as I was in the BCBS system, and I took the first >available spot which gave me about six weeks to plan the trip. > >I planned out all the details as well as I could in advance, including >making reservations at a nice restaurant for Thanksgiving dinner (on the >advice of Drs. Albee and Sinervo ... conveyed through Heather Guidone >at my request ;>). We flew in on Sunday, 11/20. My husband, Todd, >didn't want to drive in Atlanta, so we stayed at the Embassy Suites in >Perimeter Center because they have really good shuttle service, and also >because Todd and I wanted a bit more space to stay in for nearly a week. >The hotel staff were all really nice and very helpful, and I got the >impression they would have been that way even if I had not been in town >for surgery or told them that's why we were there. Other guests also >commented on how nice everyone was. We did all our travelling by >shuttle, except for using the subway system MARTA to and from the >airport (and a cab ride from the hotel to the MARTA station early the >morning of our flight home). There was a somewhat mediocre restaurant >in the hotel, a very nice and not too pricey restaurant right across the >street from the hotel (we could walk back and forth from there), and we >did some grocery shopping with the help of the shuttle service on Monday >afternoon so we were also well stocked in the room. We packed as light >as possible so Todd could carry all our baggage himself on the way back >(though I still ended up with a few clothes I didn't wear). The >hospital also had a shuttle service, run by their security department, >which was really nice -- no waiting for the hotel shuttle to get around >to us, that is. Neither shuttle service was running as early the >morning of surgery as I needed to get to the hospital, but the hospital >took care of us anyway -- one of their security guys, whom I had met a >couple of days earlier when I went to the hospital to have my blood >drawn for pre-surgery tests, had volunteered to come in early in order >to pick us up and he was good to his word. > >Everyone at the CEC was absolutely wonderful -- as kind, courteous, >helpful, and respectful as I could possibly want. And believe me, I >wanted those things a *lot* after dealing with doctors here in Illinois, >who generally thought I was a nut-case and refused even to prescribe me >Tylenol 3 (which was all I needed to manage my pain, since I'd never >been prescribed anything at all for it before, and which I only allowed >myself to take after getting to the point of being unable to sleep more >than 2 to 4 hours out of every 36 because pain kept me awake). > >My pre-op appointment was on Monday, 11/21. I don't know if I was the >only patient there at that time, but I certainly felt like it. (There >wasn't anyone in the waiting room when we came in.) By that, I mean that >I felt like I received VIP treatment. I didn't have to wait for >anything because the whole thing was well-planned out ... paperwork, >introductions, meeting with Muriel Frank (the surgical coordinator and a >nurse who handles some of the more "humdrum" details like questions >about the bowel prep), meeting with Dr. Albee initially, the exam, then >meeting with Dr. Albee for a more in-depth discussion after the exam >... that all went very smoothly and professionally. Muriel told me >they'd just started doing this, but they provided me with everything I >needed for the bowel prep, which was really nice since it meant I didn't >have to find somewhere to buy what I needed. Dr. Albee did such a >gentle exam that had he always been my doctor, I wouldn't have ever felt >pain during a gynecological exam. He took his time doing the exam, too, >so that I could tell him what areas bother me. He answered every single >question I could think of, as well as Todd's questions, and went over >everything -- when my symptoms first started, how they were now, how >they'd progressed, what I'd done to combat them, previous surgical and >any other treatment, experience with anesthesia, etc. -- to make sure >he didn't miss anything and that he understood exactly what I wanted. > >I gave him permission to do a hysterectomy if he felt it were warranted >based on his best judgment and experience because some of my symptoms >were indicative of adenomyosis, and because I wanted the results of this >surgery to be as definite as possible. This was an easy decision for me >because I've never wanted children, and neither did Todd, so he'd had a >vasectomy soon after we were married. I was extremely comfortable >telling Dr. Albee to do a hysterectomy if he felt it was necessary to >relieve my symptoms because I know he never removes the uterus without >removing *all* endometriosis, because I know he knows that a >hysterectomy is not the cure for endometriosis, and because I knew I >could have the hysterectomy done the way *I* wanted it done (I wanted to >keep my ovaries and cervix unless they were irreparably damaged by >endometriosis or other disease, which are options my local doctors won't >even consider). Obviously, this is a very personal decision and the >factors you'll want to consider will most likely be different for you, >but I can absolutely assure you that Drs. Albee and Sinervo will do >everything they can to follow *your* directions on this and every other >issue, and that they will restate in their own words what they think you >are telling them so both you and they can be sure you're all on the same >page. > >Dr. Albee gave me two prescriptions -- one for a pain medication and >the other for an anti-nausea medication -- so I could fill them and have >them waiting for me back at the hotel after my surgery. This was >another "little" thing I thought was fantastic. I've had quite a few >surgeries before and always had to fill prescriptions afterward because >they had not been given to me beforehand. Especially since we were not >at home, not driving, and not all that familiar with our surroundings, >this was truly appreciated. > >Surgery was Wednesday, 11/23. The hospital had told me (during a pre-op >telephone appointment with them a week beforehand) to be there at 5:00 >a.m., I think it was. Dr. Albee's office told me to wait until a while >later (I don't remember the time now) because they said no one would be >there that early. We got there a bit earlier than Dr. Albee had told >us to be there because we'd planned ahead in case we needed to call a >cab at the last minute (if the man from the hospital security department >didn't show up, that is), and Dr. Albee's office was correct: We waited >about twenty minutes before anyone from the hospital was there to tell >us where to go next. At that point, all the people waiting for >out-patient surgery and their accompanying relatives were led to an area >where we were assigned our own "spots." Some of these were rooms, while >others were curtained off areas like what you generally see in an >emergency room; I was assigned to a tiny room. From this point on, >everyone I encountered introduced themselves by name and based on what >they did -- nurses, anesthesiologists, and so on -- not that I remember >any of it. But, again, everything seemed very well planned and went >very smoothly, and everyone was just *so* nice. I met at least two >anesthesiologists and discussed my needs with them, and not long >afterward, Dr. Albee stopped in to check on me. I've never had a >doctor come see me right before surgery like that, so again, I was very >impressed. He asked if everything was still the same as on Monday in >terms of what I wanted him to do, and I confirmed that it was. He was >not in a hurry, meaning that it was clear to me that if I had any >additional questions, then he would have taken whatever time I needed to >discuss them. The one question I had was if I could go back to the >hotel that same day if I was doing well enough and going to the bathroom >and whatever they required me to be able to do in order to release me. >Normally, I would have been kept for about 23 hours, and that would have >been fine with *me* ... but Todd was so nervous that he didn't sleep >the night before, and I knew he wouldn't want to leave me at the >hospital and go back to the hotel by himself ... and I really didn't >relish the thought of listening to him snoring while I was in recovery. >;>) Dr. Albee said it would be fine with him if I went back to the >hotel if I was ready, and I think I pretty much set my mind on that >then. Shortly after that, an anesthesiologist came in and told me he >was giving me an antibiotic through my IV, and the next thing I remember >is thinking, "I wonder if there was something else in that because I >feel a bit loopy." Most likely, I just lost a bit of time there going >backward from when they did actually administer something to start >relaxing me because Todd says I said I felt loopy later on when that >happened. ;>) Next I recall being in the operating room before they >started surgery (I do not remember being wheeled in), and Dr. Albee >gently rubbing my hand in a very comforting way (at least, I think it >was Dr. Albee ... I don't really know as he had his surgical mask on, >and I just assumed it was Dr. Albee at the time). And next I remember >waking up in recovery ... > >My abdomen felt like I'd done 1000 sit-ups, but the nurse gave me >something right away for that. I know she gave me something else for >pain again a bit later before I was wheeled to another room. This was a >private room with its own full bathroom! Not what the hospital had led >me to expect during the pre-op telephone appointment, but I certainly >wasn't complaining! I had a different nurse now, and I know she >introduced herself also, but I can't recall anything else about her >other than thinking she was also really nice. I was still trying to >wake up more, as I kept dozing off, when Todd was brought into the room. >He immediately started showing me my surgical pictures and telling me >what happened during the surgery, and somehow I remember most of that. > >Drs. Albee and Sinervo had spent an hour looking everywhere for >endometriosis -- and they didn't find any! Apparently, it was correctly >removed during the previous surgery by a doctor here locally. I would >never have believed this if any other doctor had told me the same thing, >but I trusted Drs. Albee and Sinervo implicitly by this point. They >had found and removed adhesions that started from where I'd had my >appendix removed (covered with endometriosis) in 1996 around my >intestines. They'd done the test for interstitial cystitis, which I >don't have. And because they couldn't find any endometriosis or >anything else to explain my pain, they did the hysterectomy. > >Then Todd sat back in his chair and started snoring, just as I had >expected. I woke him up to make him call the various people who were >waiting to hear I was safely out of surgery, while I continued trying to >wake up and do what I needed to be able to do in order to be released. >Waking up was more difficult than I had expected; I even dozed off while >trying to go to the bathroom. The nurse came in to see if I was okay, >which is what woke me up that time. However, they brought me two trays >of food -- mostly liquids except for some chocolate pudding I thought >was quite tasty -- and that helped me start waking up, but my memory is >really fuzzy regarding that day and a good part of the next. I'm fairly >certain I was given something for pain again -- a pill this time. When >the nurse said it was okay for me to walk around as long as she or >someone else was with me, I woke Todd up again and made him walk around >the floor with me several times. That really did help wake me up, and >it got other things moving, too, so I was finally able to go to the >bathroom. Not long after that, I was allowed to leave, although I do >remember the nurse saying several times that they were *not* rushing me, >and the room was mine if I wanted to stay. But I was still determined >to go back to the hotel, and so we did. > >I felt quite out of it for a couple of days but still was able to watch >and make sense of TV shows and work on a small cross stitch project I >had brought with me. I can't say I actually remember much about working >on that project, but it looks like I did fine. ;>) I slept when I got >sleepy, I ate what I wanted when I felt hungry, I walked around the >hotel both outside and in several times a day to make sure I was doing >enough stretching, and I already felt better. I did take the pain >medication on schedule for about the first two days before I started >tapering off, but that pain was definitely surgical and the pain I had >experienced before surgery seemed to be gone already. My other symptoms >were also clearing up immediately, though I did continue to take my >bowel medication for as long as I took the pain medication to prevent >constipation. I stopped needing pain medication at all by the next >week, and I probably could have stopped even sooner, but I didn't see >why I needed to be in any pain at all when I had the medication >available, so I used them when I was going to sleep mostly. The pain >itself was really focused around my belly button ... and was most >noticeable when I was trying to stand up, or to sit up from a lying down >position. When I was just sitting, or just lying in bed without moving, >it really wasn't bad at all. I would say it decreased by half each day, >so progress there was very noticeable. > >We flew home early Saturday morning, 11/26. I wouldn't have minded >waiting one more day to fly and have had that much more time to heal >first, but I was really happy to be heading home, too. Todd was very >chivalrous, so I was able to take it easy as instructed. I had >requested a wheelchair for the return trip when I purchased our tickets, >so that was waiting for me when we got to the airport (as soon as we >checked in using the machine, as we had flown ticketless, the message >went somewhere because someone showed up with the wheelchair before we >were quite ready to go looking for one). The person who brought the >wheelchair would have pushed it, too, if Todd had not wanted to do that >himself. > >Not quite two weeks later, the operative and pathology reports came. The >pathologist went the extra mile, too. When her first test of my uterus >came back with a "maybe" result, she tested it again to get a conclusive >diagnosis of adenomyosis. I am very thankful to her because receiving >the pathology report was just what I needed to relax about how I was >really feeling physically. I had been feeling better, but all those old >questions were going in my head again. They had actually started as >soon as Todd told me no endometriosis was found (Was there really ever >anything wrong with me? Am I psyching myself into thinking I feel >better? etc.), so finding out that, yes, there definitely *was* >something wrong with my uterus was a huge relief to me. And from >reading the operative report, it was even more clear to me that the >doctors had actually listened to *me* and believed the symptoms I >reported because my uterus looked and felt entirely normal. Without >considering what I had been experiencing for so many years, they would >have had no reason at all to suspect adenomyosis, but I definitely did >have it ... and that is definitely what was causing my incapacitating >back pain, which is *gone* now. It still amazes me several times daily >to realize that my back *doesn't* hurt because that pain was *always* >there, and I had focused a lot of my energy on trying to convince my >brain that it wasn't there, or wasn't pain, until the last five years or >so when the pain was just too strong for psychological trickery to have >any effect. > >I am 36 and have not felt this good since I started menstruating at age >11. I am no longer constantly running to the bathroom with diarrhea, or >feeling like I need to have a bowel movement and being unable to, thanks >to having those adhesions that were going around my intestines removed. >My bladder has calmed down, and although I'm not sure what was the cause >of those problems (frequent urination, unable to go when I got to the >bathroom, resorting to trying to sleep while on the toilet so I wouldn't >have to keep getting out of bed, etc.), I have no doubt whatsoever that >having the hysterectomy solved those issues. I already covered the back >pain ... The almost constant bloating and nausea disappeared as soon as >my bathroom functioning returned to normal. Sleep is no longer >fleeting; in fact, I can sleep for 12 or more hours in a row, and wake >up feeling refreshed and feeling no pain at all. The various painful >muscle spasms (back, abdominal, vaginal, and rectal) I'd had so >frequently are almost entirely gone now; they've decreased in severity >and frequency as time has gone by. I now believe they were most likely >caused by my bathroom difficulties and the back pain, for which I had to >learn to accommodate ... and to accommodate, I tightened *all* my >muscles subconsciously. Eventually, I started having the muscle spasms, >which was my muscles' way of trying to relax because I never allowed >them to relax. Now, I don't need to work so hard to control my body, it >*is* under my control, those things that are supposed to be instinctive >*are* once again instinctive, and I feel fabulous. And in large part, >these changes occurred immediately post-surgery. > >Overall, my trip to Atlanta felt more like a vacation than what it was. >Everything went so smoothly, everyone was *so* nice, and I felt so >confident that I had made the right decision for my health care that I >was able to relax and enjoy myself (minus the bowel prep ;>) more than >I'd been able to in years. The CEC staff and doctors, and all of the >hospital staff as well, were all so wonderful in every sense that I >truly felt *pampered*. > >I am so, so thankful for the CEC. Without each and every one of them, I >would very likely still be suffering -- and for no good reason! The >knowledge about how to treat endometriosis very effectively and in many >cases permanently *is* out there; unfortunately, too few doctors are >interested in learning about it. Even if you choose another >endometriosis expert, I hope you will soon pursue this form of >treatment. I can't guarantee it will work for you, of course, but I do >believe it is the most worthwhile thing to try for the very large >majority of women with endometriosis. And no matter what you decide to >do, I wish you all the best.
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