I was having a chat with one of my online blogging friends, All Things Chronic, a couple of days back and I realized I never finished writing the post I intended to about my impending surgery. A few months ago my reluctant surgeon sent me off to get a second opinion with the best colorectal surgeon in the city. After he advised her that I needed surgery to remove the mystifying growth in my pelvis to improve my quality of life, she chose to ignore that advice and wanted to send me for a third opinion with another surgeon who she called her “peer” at the hospital where my misdiagnosis nightmare started.
When I told her I wasn’t comfortable going back to that hospital for any reason – not even to have impacted earwax removed – she offered to perform a laparoscopy to further investigate the nature of the growth. I was more than a little unnerved by that proposal because she also added that if while she was poking around in my pelvis she determined that it was definitely a colorectal issue, she would then move forward with the larger surgery – a laparotomy. The laparotomy is the larger pelvic incision needed to remove the growth and do the necessary resection. The problem with this approach is what would be missing. She would not be able to follow the surgical pain management plan developed by the pain clinic to make sure I didn’t experience unnecessary pain and give the doctors a better chance to manage my post-surgical pain. She also didn’t have a surgical team identified, beyond herself and her resident, to deal with any unexpected issues that might come up during surgery. The final thing she said that really plummeted my comfort level was that if I were her sister she wouldn’t recommend that I have the surgery. Think about that for a second… The question that came to my mind was would she want her sister living with the level of pain I do on a daily basis for the rest of her life.
I left that appointment feeling the most hopeless I have felt since this whole ordeal started. As soon as I got home I called the specialist managing my referrals and got an emergency appointment to see him a few days later. I explained the situation and my fears and he expressed his own concerns about my reluctant surgeons proposed approach. The main concern being that if she only performed a laparoscopy and scheduled the resection for a later date I would have to go through two surgical recoveries, and my pain response couldn’t be predicted. He asked what I wanted to do and said he would support any decision I made. I told him that I wanted the second opinion surgeon to be my surgeon. He put things in motion and all I had to do was call the second opinion surgeon’s office to schedule a follow-up appointment.
The follow-up appointment was about a month ago. The second opinion surgeon agreed to take me on as his patient and immediately got to work on my surgical plan. While I was sitting in the consultation room, he looked at my imaging results again and determined that the mystifying growth is in a place on my rectum that should not require a resection that involves the complete removal of my rectum. He did make one caveat, that imaging doesn’t always give a full picture of what he might find during surgery, but fifty percent of the time, he does find good surprises. If he has to remove a large section of my rectum, I will have a temporary ileostomy inserted. If he must remove my entire rectum, I will have a permanent one. The decision will be made depending on how low the growth actually is to my pelvic floor. However, his optimism about what he sees in my imaging boosts my hopes that even though this surgery is complicated – no bowel surgery is sterile and I could have unexpected bleeding – I have the best surgeon doing the surgery.
The second opinion surgeon also identified the doctors that would be part of the surgical team. There will be a gynecologist – my referring specialist – in case the mystifying growth has caused damage to the right hemisphere of my reproductive organs and my right fallopian tube and ovary must be removed. There will be a urologist, who I most likely won’t meet before surgery, to deal with any damage to my bladder or ureters. If the second opinion surgeon runs into any other unexpected issues during the three hours he booked for the surgery, there will be a pool of doctors he can draw from to join the team while surgery is underway. He will also follow the pain management plan from the pain clinic.
I don’t have a date for surgery yet. It will most likely happen at the end of August or beginning of September. Although this will be a life altering experience, I feel hopeful. Now I feel secure that whatever the outcome, I’m in the hands of the best surgeon for the job, and he is optimistic and hopeful that I will come out of this with positive results. He was also kind enough to give me his email address in case I have any questions in the meantime. I hope that the positive results he wants for me includes the elimination of this pain I’m living with every day, but I know that realistically that might not happen.
Coldplay – Fix You