On Tuesday morning I had a nerve block. According to the pain specialist who performed it, the procedure couldn’t have been more perfect. The needle was easily passed through my tailbone to deliver the anesthetics to my nerves – this may be the one thing about my condition that has played out as described in a medical textbook. Because they inserted the needle into my tailbone, the area has been incredibly sore so the only way I’ve been able to sit is straight upright as if I have a plank in my back.
Ganglion Impar Block
For the past 48 hours, I’ve been dutifully keeping a log of my pain improvement progress every two hours. Overall, I’m not pain free but I have less pain than before the procedure. I still have my right-side oriented pain in my lower abdomen, back and leg but I’m experiencing what I’ll characterize as a constant low level of pain on the pain scale. This probably means that combined with the nerve block, I’m feeling the benefits of my pain medications for the first time in a long time. My hope is to lower the level of pain medications I take over the next few months so when I have surgery the doctors will have room to treat me before reaching the maximum limits of pain medication doses during my recovery. The pain specialists have told me that my case is very complicated and the possibility exists that my pain will be difficult to treat post-surgery. This nerve block will be a good indicator of what they can expect.
I’m also hoping to go for a few walks before the effects of the nerve block wear off. Walking for a significant distance is something that I have a lot of difficulty with these days. With the weather being as wonderful as it is, it would be nice to pack a lunch, walk to the park, and sit in the sun for a while. That’s such a simple thing to wish for, but it’s something I badly want to do. However, I know I’ll have to take things slow because I just came back from an appointment and the car drive there and back has affected me negatively and increased my pain. I’ll dream about the walk to the park while I rest my body.
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
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.
Yesterday I had an appointment with my reluctant surgeon to follow-up my consultation with the second opinion surgeon. She does not agree with his assessment. She said that she and the second opinion surgeon have “binary opinions” about how to proceed. She still does not believe there will be any positive outcomes to the surgery that has been identified as necessary to remove the growth in my pelvis and restore my health. While he believes the only way to improve my situation is to undergo that risky surgery.
As it usually goes, I walked into my appointment feeling hopeful and I walked out feeling deflated. The only time, since my first meeting with her, that I felt any hope is when she suggested that I meet with the second opinion surgeon to get more guidance about my condition and options for how to treat it. I see now that she expected him to support her position. She wanted him to say that I shouldn’t have the surgery because it would be too risky and could considerably reduce my quality of life. She wanted him to take responsibility for making the decision. She had even told me that he might decide to take over my case after reviewing my charts and meeting me and have her assist during surgery.
But the second opinion surgeon didn’t say or do any of that. So yesterday she offered up the possibility of getting a third opinion. She said I shouldn’t view it as a “tie breaker” – because this next doctor’s opinion would clearly fall on either side – but it would make sure that all perspectives had been considered. How many perspectives are there in a case like mine? I can either have the necessary surgery with good outcomes or I can’t. What more is there to investigate? And what happens if this third opinion surgeon’s views land on the same side as the second opinion surgeon? Will my reluctant surgeon still be reluctant to do surgery? Will she continue to seek out other opinions until she gets the support she wants? Had she even considered that she was sending me to see a doctor at the hospital where I was misdiagnosed to get this third opinion?
When I questioned the rationale behind seeking a third opinion, she offered up the option to move forward with another exploratory procedure. This time it would be a laparoscopy. I mentioned that the second opinion surgeon asked if I had had one. The laparoscopy would be done to take a look into my pelvis to see if the structure growing there could be seen with more clarity than from all the imaging and other procedures I’ve had over the last 21 months (countless abdominal and trans-vaginal ultrasounds, two CT scans, an MRI, a colonoscopy, and two failed fine needle aspirations), and to confirm the growths exact origin. The structure and the origin of this growth have been debated since I first became ill and I was under the impression, until yesterday, that these issues had been resolved. But clearly not, and now instead of moving forward to completely remove it from my body she wants to take another small diagnostic/exploratory step.
Although, I should make something clear. She wants me to consent to this small step – the laparoscopy – with the understanding that depending on what she sees she may go ahead with the more complicated resection. I cannot consent to that. I cannot consent to that because my pain specialists have developed a detailed pain management plan for during and after the resection, which if not followed could leave me even more f****d than I am now. The pain plan must be started before surgery for a successful outcome. So the thought of allowing my reluctant surgeon to do something that would put me at risk of having more pain than I have now scares me beyond words.
After the appointment, when I got home, I contacted my doctor that referred me to my reluctant surgeon. Even though he is not my family doctor/general practitioner – he’s the gynecologist I was sent to because of my misdiagnosis – he has managed all my referrals. He’s the only one I trust to help me make the right decisions about this situation. I’ve requested an appointment to see him within the next few weeks. Whatever he says I’m sure will be better than my reluctant surgeon telling me that if I was her sister she wouldn’t recommend I have the surgery, which amounts to I shouldn’t have anything done at all and continue living with this unbearable pain and taking the mountains of pain medication that barely make a dent. Or worse, that I should make the decisions and absolve her from her responsibilities as a surgeon because she might put on her best, god-like performance in the operating room and fail.
This morning a light went on. My reluctant surgeon is not reluctant. She just does not want to do my surgery. She has not only burst my bubbles she has become the fly in my ointment.
My Small Surrenders 