Category Archives for Surgery

The Second Opinion Surgeon Takes Center Stage

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.

My Hope Is Blooming

My Hope Is Blooming

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

Nerve Block Nervousness

On Tuesday morning I’m getting a nerve block. A Ganglion Impar Block to be more specific. The pain specialist ordered it during my last visit to the pain clinic for hopefully better pain management. The closer I get to the appointment, the more nervous I become. I know the intention of the procedure is to reduce my pain – although temporarily – but the process that’s been described to me along with the odds that it may not work are starting to play on my nerves.

I have instructions to start fasting at midnight tomorrow night because I will receive full anesthesia as if having a big surgery. Then I will check into the Outpatient/Ambulatory Surgery department at the hospital at 8:30 AM on Tuesday. Once I strip down to nothing but a blue hospital gown and my vitals are recorded, an orderly will wheel me down sterile corridors while making small talk with me about the weather. The destination will be an even more sterile room with scrubbed, masked strangers who will be predictably cheerful as they organize trays of instruments and measure precise quantities of nerve-numbing medicines.

Ganglion Impar Block Instruments

Ganglion Impar Block Instruments

As described, the procedure will require me lie face down on my stomach “with a pillow under the pelvis to help flatten out the lower lumbar spine’s natural curvature. Your lower back and intergluteal cleft [that’s ‘butt crack’ in layman’s terms] will be prepped and draped in a sterile manner before local anesthesia is administered at the point of entry of the needle into your skin. When your skin is adequately anesthetized, the needle will be advanced under fluoroscopy guidance until correct needle placement is obtained. Its correct placement will also be confirmed by administration of contrast dye. Once position is confirmed either a diagnostic block (to determine if your perineal pain is visceral or somatic), or a therapeutic block will be preformed.”

I think the best part of all this will be my lack of consciousness as I lie on that table with my naked butt in the air when they penetrate my tailbone with the needle. With that wondrous image in my mind, my hope is that when I wake up I will have better pain relief. I hope I don’t experience a pain flare up before that relief arrives as the pain specialist has forewarned. I hope I can have a few months of better pain relief before the next wave of intense pain arrives when I have the big surgery at the end of the summer. I know I’m hoping for a lot.

 

Pat Benatar – Anxiety (Get Nervous)

Why Am I Being Punished?

I’ve been crying on and off since my appointment with my reluctant surgeon a couple days ago.

My friend J went with me to the appointment – she usually does to make sure I ask and get answers to all my questions – and even though she had to go back to work, she was kind enough to sit with me for a while afterward to help me process what had happened over a cup of coffee. She was as confused as I still am, and she was sympathetic because she has gone through this with me since the beginning. I’m not sure how I would be coping with all of this without her support. She called later in the day to see how I was doing. She shared some of her thoughts with me and helped me solidify my plan for moving forward.

J isn’t the only person I’ve spoken with since my appointment. Whenever I have an appointment there is a list of people who, if they can’t go with me, I have to talk with about what happened. Everyone was as confused as J and I were. The responses ranged from angered disbelief to calm measured instruction about what I should do next. And the consensus was – as it has been for some time – that the response to my illness has been poor and that my reluctant surgeon may not be the right surgeon for me.

In between these conversations I cried. I’ve been so overwhelmed and distraught that I asked myself an irrational question that pops up when I lose sight of hope: WHY AM I BEING PUNISHED? I know I’ve done nothing to deserve this illness. But at times like this I can’t keep from shouting out to whoever or whatever might be listening out in the universe and asking what I did wrong and how I can fix it. Sadly, no answer ever comes.

No answer ever comes about why there has been so little movement toward making me better and it scares me. It scares me to think that none of the doctors I have seen have enough interest in working to get me better. No answers ever come about whether my reluctant surgeon is right that if I have the surgery it will cause me more harm than good and I will never be pain-free and it scares me. It scares me to think that she is not considering the pain I have now and how it has increased significantly in two years, and how much more it might increase if she does nothing. No answers ever come about why I keep encountering doctors who are so single-minded and unwilling to hear me when I tell them what is happening in my body. It scares me because if I’m in such close proximity to my doctors and they don’t listen to me then why in the world would the universe.

If the universe is listening maybe that’s why I received a call this afternoon from the office of the gynecologist who figured out I was misdiagnosed. He is also the one who has managed my referrals to other doctors and clinics for treatments. His staff heard my distress and squeezed me into a spot to see him next week. My hope is that he will listen to me and help me figure out the next step in untangling the painful mess that is my life.

 

The Beatles – Across the Universe