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Re: Presacral Neurectomy (THE CEC with Dr. Sinervo) From: Danielle (anonymous@obgyn.net) Fri Feb 27 08:45:19 2009 Messages sorted by: [ date ][ thread ][ subject ][ author ] Next message: luanne: "colon & lung endometriosis" Previous message: NWeber: "Re: Prabhat K. Ahluwalia, M.D." Hi. I am 23 yrs old and have had this procedure. I was promised no side effects accept less pelvic and lower back pain when I got my period. Maybe I should start from the beginning. When I was 12(1998) I had my first surgery. It was for an ovarian cyst the size of a large orange on my left ovary. It took me 2 months before I could stand up straight and another few weeks before I finally went back to school. They put me on birth control to regulate my period immediately after surgery. I was pain free for a good many years and when I say pain I mean that normal cramps don't count. Then when I was 16, the horrible incapacitating pain started again. Mind you the doc that performed the first surgery retired and some other doc and his midwife moved in. When I complained to them about my history of ovarian cysts (getting them almost monthly and one that he ruptured during an exam) and of bleeding tissue and clots for 45 days at a time, they told me that there was nothing that they could do for me. I was so fed up from hearing that from them for almost 4 years, I went and got and got a second opinion. THE BEST THING THAT I EVER DID! After a 5 minute pelvic exam he sad that by my pain intolerance I needed immediate surgery. Less than a month later, I was put under. He told my mother that it would be a routine 30-45 minute surgery. That was until he came out over 3 hours later and he said that he couldn't believe what he saw. I had endo stage IV where it starts to destroy your organs. He had to remove half of my left ovary, peel my colon off of my uterus, remove these things called 'chocolate cysts' off of my bladder, uterus, colon, ovaries, pelvic floor muscles and uterers and that he noticed that my uterus was slightly tipped but nothing to worry about. He said that he has not seen that much damage or that amount of tissue from endometriosis EVER in anyone my age or age group. He said that he only sees that in women over 40. In a week I was back to work with only slight twinges of pain. I thought that he was the best OBGYN doc out there! That was in February 2006, I was a few months away from turning 21. In September of that same year, I got married. (Let’s just say that my husband was the first man that I ever kissed and I got kissed when I was 20.) Not knowing what to expect from that side of marriage, I didn't pay too much attention to the pain. After being married only 2 months, I went back to that same doctor and told him my symptoms. He gave me a pelvic exam and said that my uterus has completely prolapsed into my colon and if I consented he would go in and tack it up. He also suggested that during the same surgery that I have the sacral neurectomy for all of my pain. (My pain was so bad that all I could do was lay down in a ball and rock back and forth and moan whenever I got my period and it scared the heck out of my husband who saw this first hand since we started dating.) He promised me no sexual side affects from both surgeries and the only good side affect would be less pain during intercourse and during my period. On November 17, 2006 I underwent the knife again. When I came to I could not believe the pain I was in! After 2 shots of Demerol, they told me to try and pee. I got up and walked to the bthrm with help of my mother, husband and nurse. When I got there I couldn't go. The nurse told my doc and he said I can go home if I pee. So I started to drink like crazy (no one told me that you are not supposed to drink heavily after this surgery) and all the while the I.V. is in. After an hour or so and 2 more shots of Demerol I finally say that I have to pee and I got up and walked again with the help of the same three people and I finally pee. I was so excited that I could go home with my husband even though we lived 2.5 hours from the hospital in another city. The doctor didn't think that I peed enough so he had the nurse scan my bladder. I don't know if you know what this does but it is a hand held device that is pressed down onto the bladder to measure the CC's it contains. Didn't I just have surgery in this area?!?!?! That hurt so bad when they pressed at all different angles to check the CC amount. After 5 minutes of pain, I was told that I had 300 cc's to empty. Even though I just went almost 600 cc's 15 mns prior. My mom who is a nurse told me to stop drinking and told the other nurse to turn of my I.V. From there I made at least three more trips to the bthrm. It is now 11 am at night and we should have left around 9:30-10 to get home since my husband had to leave the house at 5:30am to get to work the next morning. The doctor then told us that I cannot go home until my bladder was empty. SO my loving patient husband went home amidst my crying that I wanted to go with him. After he left, the doc tried to admit me over night and I suggested that I go home with my parents who live less that 10 mns away. He thought that was practical. I forgot to mention that when I was in recovery my mom said that my doctor came out and explained what she did and that she also removed more endo tissue and adhesions and scar tissue. I said that she must be mistaken because my doctor is a man. That's when I realized that he had one of his students practice on me! And yes, I signed a waiver, unfortunately. When I was discharged I received my 6th shot of Demerol with a prescription for Tylenol 3 which to me is as potent as a handful of skittles. We get home around 12:30am and less than 2 hours later I wake up screaming in pain that I have never experienced before in my history of pelvic pain! My mother said that I looked like a spooked horse whose eyes get huge. My dad and little brother thought I was dying and my little brother who was 16 at the time started to cry. In the process of walking out the door (it would take longer for us to call 911 and have an ambulance pick me up than for my mom to bring me back to the hospital) and all my pain, I realized that I had to pee. My mom said that I was crazy and I said let me pee. After I peed, the pain lessened and that scared me. I was still in extreme pain and when I got to the ER (same hospital where I had the surgery) and after the un-discharged me from earlier the nurse gave me a double dose of Demerol. It helped until my bladder filled again. So I start sobbing and screaming as I walk to the bthrm to pee. Thankfully the bthrm is two feet from the exam table in the same room. I go and the pain gets knocked down a notch. After two hours or so of me screaming and getting up and peeing (which is really bad to get up so much right after pelvic surgery) the nurse gives me a shot in between of Demerol. Then the nurse happens to be walking by to check up on me and she hears me but can't see me since I am in the bthrm with the door open and I am sitting on the toilet just sobbing my heart out because it hurts so bad she runs and grabs a shot of loradol or toradal (something that sounds like that) and gives me the shot while I am still sitting. An hour or so goes by and I am dealing with twinges of pain but before you know it my bladder starts to fill and I once again start screaming and crying. Meanwhile my mom is at her wits end and trying not to cry in front of me so that I don't get scared by her reaction. The nurse comes running in and my mom explains to the nurse that something is really wrong, that I shouldn’t be in this amount of pain just because my bladder starts to fill. The nurse looks frazzled and tired the poor thing (I must of been pretty scary that my pain was uncontrollable) and she runs and gets the doctor on duty who I saw once when I was brought in and he has me explain to him again all that is going on and he then looks at the nurse at my mom and then back at me and at that time I need to get up and pee to lessen the pain and he finally saw first hand what was going on. By the time I get back to the exam table where I have been trying to get comfortable since I first came in, the doctor was there with a clipboard. He said that I needed to sign a waiver for the 'big guns'. I exhaustedly and gladly signed. He rolled me over on my side, pulled down my sweats and gave me the shot in my hip. (Unfortunately he hit a nerve but I couldn't tell till later.) He then said that the most common symptom is itching. If I feel anything else to call the nurse. Let's just say that I finally fell asleep while scratching and continued to scratch while I was sleeping. We left the ER around 5:30am the day after my surgery. Crazy right. It gets better. It took a few weeks for the 4 month swollen pregnant look to go away. Every night for almost a year, I woke up with that same pain when my bladder filled. It was tolerable after I peed. I still have bad pain if I don't empty before I go to bed or right when I wake up. Remember how the doctor promised no sexual side affects? He was so wrong! He (or she if the student did this part) cut the nerves that go to the Bartholin glands and they are what produce the lubrication when you are sexually aroused. They also removed the nerves off the back of my uterus. Since November 17, 2006 I have not gotten sexually aroused. Imagine being married for only 2 months and having this taken away from you!!!!! I still get ovarian cysts and have endo symptoms again. I still have pain that shoots out of nowhere. I have bad lower back pain when I get my period on top of ovarian and other pain. I don't want to imagine how bad the pain would be if I didn't have the nerves removed. Then again, I think the extra pain would be worth it if I could enjoy relations with my husband again. Shall we talk about the birth control that I have been on since I was 12? I was on that garbage for over 10 yrs. Yes, I had great skin and no PMS but do you know what that stuff does to you?! It turns out that the pill is what is responsible for no sex drive. It makes your liver work obnoxiously hard to create this protein called sex binding globulin that destroys testosterone, and you need that to feel sexy and want to have sex. It also thins the skin in the vaginal vestibule, the skin that is around your vaginal opening. I only know this because I am seeing this great specialist in the DC area who treats vulvo-vaginal disorders. He is the one that made me stop taking the pill and who referred me to a physical therapist who works with pelvic floor dysfunction. My hip and inner vaginal and pelvic muscles where 70-80% tighter than they are supposed to be and that causes major pain during intercourse. Even though he cost a small fortune to go see, he opened my eyes to a lot of problems that the other OBGYN docs weren't telling me and couldn't tell me because they had no idea what to treat or even look for. I am 23 yrs old and am still looking for some doctor who can fix me back the way that I used to be. I hope that you find some relief as I did At Thu, 18 Sep 2008, Yukky wrote: > >At Wed, 17 Sep 2008, anonymous wrote: >> >>Yes, I totally agree with Sherri's message. If you have adeno, why >>doesn't he want to remove the uterus? That is the only thing that cures >>it. Is it because you are still trying for a family? >> >>I only heard of a couple of women having a presacral. They both told me >>after the surgery they were in the worst pain of their life (one said >>that it felt like someone hit her with an axe). And both said >>eventually their pain came back. >> >>Good luck with whatever you choose. Oh, and also because Dr. S is with >>the CEC, I wouldn't worry about anyone cutting the wrong nerve on you. >>Although that is always a possibility, endo specialists usually know >>what they're doing. >> >>At Wed, 17 Sep 2008, Sherri wrote: >>> >>>Yukky, >>> >>>Hi! I have had the pre-sacral neurectomy and I will share my experience >>>with you. This is not meant to scare you or deter you from having it, >>>this is just my story. >>> >>>I was diagnosed with stage IV endo via lap in 2000, and IC a few months >>>later. In 2002, I was referred to Emory University Medical Center and I >>>saw the chief of the Reproductive Endochronology department. He wanted >>>to do a laporatomy with pre-sacral neurectomy, appendectomy, and a few >>>other things were needed once he cut me open. I was very nervous about >>>the PSN since I had never heard of it before and I could not find anyone >>>else that had had it done, or much info on it. My pain was mainly in my >>>lower right abdomen/pelvis (and still is!) but this doc kept telling me >>>that he thought I was really having mid-line pain that was radiating to >>>my right side. He kept saying that the PSN would stop all of this >>>mid-line pain and cramping and he really talked it up. Being so sick >>>and in so much pain, I finally agreed to surgery with him. I had the >>>surgery in March 2002, and to make a very long story short; HE CUT THE >>>WRONG NERVE!! I now have permanent ilio-inguinal nerve damage in my >>>pelvis/abdomen. Needless to say, I never got a bit of pain relief and >>>in fact my pain became much more severe. I now suffer with severe pain >>>daily and I am under the care of a pain management doctor. I can not >>>get through a day without heavy-duty painkillers. There is no fix for >>>the pain I have now as the nerves are irrepairable. It took me over 7 >>>months to recover from that surgery, and I lost 75 lbs. due to the >>>severe pain and nausea I was in. That surgery was unsuccessful in >>>treating my endo also because 9 months later I had to have my right >>>ovary, adhesions and even more endo growths removed. >>> >>>Since the doc thinks your pain is from the Adenomyosis, why not have the >>>uterus removed? That is the only way to get rid of pain from Adenomyosis >>>as far as I know. Please understand that I am not promoting >>>hysterectomy at all, I am just under the impression that adeno can only >>>be treated by removing the uterus. There are, of course, other possible >>>complications of a pre-sacral neurectomy, mainly the loss of sensation >>>and/or feeling of the mid-line area and I think that can apply to loss >>>of sexual sensations as well. I am not positive about that though. I >>>also have a ton of adhesions and I do have pain from that also, so I >>>understand what you are feeling. As for your IC, what meds have you >>>been on for that and have any of them helped? I'm glad that you are >>>going to get a cystoscopy soon, and hopefully that will convince the >>>other doctors who are not trusting Sinervo's diagnosis of IC. That's >>>crazy!! Sadly, there are so many doctors that just don't understand IC >>>at all...or endo for that mattter. >>> >>>If you have more questions about the PSN or want to hear any more >>>details of my experience, feel free to e-mail me privately and I will >>>help in any way that I can. I am sorry that you are having so much pain >>>and problems again! I wish you the best of luck in whatever you decide >>>to do! >>> >>>-- >>>Sherri :) >>> >>>At Mon, 15 Sep 2008, Yukky wrote: >>>> >>>>Hello everyone, >>>> >>>>I have not been on this forum in quite some time. Of course that does >>>>not mean I have not been feeling bad or in pain. My previous name was >>>>Pamela. >>>> >>>>I had laser surgery in 04/06 & then I went to the CEC & had laser >>>>excision surgery with Dr. Sinervo. Well, I am having really bad >>>>problems again. Now, Dr. Sinervo wants to go back in & try to take >>>>care of the adhesions (he thinks that is causing alot of my problems) & >>>>then do a presacral neurectomy to help with the pelvic pain (it is >>>>really bad). He said I am having all this pain for the ADENOMYOSIS. >>>> >>>>I also have INTERSTITIAL CYSTITIS which I was diagnosed with at the CEC. >>>>None of my doctors where I live would take the doctor's word for it & >>>>they have not diagnosed me yet (you know how those hot headed doctors >>>>are). After 2 years (& being on many different medicines to help with >>>>my bladder pain) I am finally having a cystoscopy at the end of the >>>>month. >>>> >>>>I have also been diagnosed with FIBROMYALGIA by 3 different >>>>Rheumatologists. >>>> >>>>I have had several tests by the Gastroenterologist & he just finally >>>>said I have IBS (I really do not think I have IBS). >>>> >>>>Just been on a really roller coaster of a ride. >>>> >>>>JUST WONDERING IF ANYONE KNOWS ANYTHING ABOUT PRESACRAL NEURECTOMY. ARE >>>>THERE ANY COMPLICATIONS? ARE THERE BAD SIDE EFFECTS? IF ANY ONE OF YOU >>>>HAS HAD IT DONE DID IT HELP YOUR PAIN. LET ME KNOW. >>>> >>>>Thanks, >>>>Yukky >>> >Dear anonymous, > >I agree!! I think Dr. Sinvervo would do a good job. I just worry about having the presacral neurectomy done >& no pain relief. What would be the point. > >Also, like I told Sherri my husband & I desperately want a family (more so me). He really wants to have a child >but he told me if I find out that I am unable to that is fine with him (he already has a daughter---so I am a >step-mom). But, I want a child so bad that it hurts. Sometimes being around his daughter (& seeing her personalities & >traits (of course she has alot of her moms too) just makes it hard when you have no children of your own. I actually >deal with it pretty well though. > >Every once in a while though (about once every 4 months) I go through a depression spell for about a week or so (I see everyone >having babies all around me (I work at a hospital) & I just don't understand why. I think the reason why I am so positive though >is the fact that I feel like there is a reason I do not have a child right now (I have a hard time as it is taking care of my step-daughter >when she is at our home 4 days out of the month---luckily she is pretty self sufficient though). > >I am almost 35 (with no children) & it worries me. When will my time come?? > >Take care & >Thanks again, >Yukky Next message: luanne: "colon & lung endometriosis" Previous message: NWeber: "Re: Prabhat K. Ahluwalia, M.D."

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