When I go to my follow-up with the neurosurgeon, the radiologists’ report had not arrived. While we were waiting for the report to be faxed over, the doctor looked at my films. After the first few films, it looked like I was OK and I literally let out a sigh of relief. But then his tone changed and he was no longer being gleefully positive. “Well, we will wait on the report..” My heart sank.
As we suspected, the report stated that my L4/L5 and my L5/S1 discs were both herniated. Looks like both discs went towards the right side of the spine.
Surgery is required, and soon.
I am beyond claustrophobic. I literally have nightmares that I am trapped or tied up, can’t move and I wake up screaming. The MRI is the closest thing to being closed in a coffin and the panic takes over. I have been sedated in the past but it makes little difference. People love to tell me “Nobody likes getting an MRI..” Yes, but are you terrified? Does the panic and the fear paralyze you? Do you feel like you can’t breathe and that you might actually die?
I didn’t sleep for days before the scan. There is a great tech that has done a few of my scans and he is really patient and helpful. He made me feel better by telling me that he is terrified of spiders and will run out of anywhere one is present. I replied that if there was a spider inside the machine, I would never stop running! Anyway, this tech lets me go in upside down, so that I can lean my head back and see the ceiling. Ah, the ceiling.. freedom! He also runs to get me out when I hit the panic button and will sit with me and tell me stories about skydiving and parasailing. I envy his courage..
Scan complete, thank God.
With the pain in my legs intensifying daily, I begin my search for a neurosurgeon. I always check online for bios, sanctions, and real patient reviews. I select a doctor that works out of Methodist Hospital in Dallas. He has his own teaching institute, nearby my house. He has 25 years of experience and many positive patient critiques. Satisfied patients are always the catalyst for my choices. A few “they were rude” or “they lost my results” comments have me hitting the NEXT button.
I brought along my 3 MRIs, but wasn’t surprised when they told me that I would need a new one. Based on the type and location of the pain, they think I have herniated the L4/L5 disc. I have an MRI review appointment in a week.
So I tell my favorite PA/MA of my suspicions that I had herniated a disc. After hearing about the specifics of the new leg pain, she agreed that a herniation would be the likely suspect. I told her about the surgeon I was about to see and she agreed that he was a great choice. She told me that I should tell the surgeon that the pain clinic would handle the post surgical pain and asked me to call in a few weeks before the surgery so they could prescribe stronger pain medication.
Then she said, “Because honey, you are gonna need it!”
I wish I had known it would be the last time I would see her, I would have hugged her just a little bit longer. She made a difference in my life and didn’t even know she was doing it.
At one of my monthly visits to the pain clinic, the MA was examining my lumbar vertebra. As she pressed on a particular area, my toes started tingling. I told her with a laugh, assuming it was just a coincidence. It was then that she moved to my upper back and as she moved her fingers along my spine, my fingers began tingling the same way my toes had done earlier. She tells that this is caused by nerve damage in my spine.
I left the clinic with my prescriptions in hand, and didn’t think about the tingling again. Until, that is, my legs started hurting much more than ever before. This wasn’t just my fibromyalgia or neuropathy, this was worse. Much worse.
The pain was almost entirely in my right leg, below the knee and all the way down to my toes. Being on my feet greatly increased the pain and there were certain positions I could sit in that instantly caused pins & needles in my right foot. I knew it before I would even admit it to myself.. I had herniated a disc.
After some research, I settled on a neurosurgeon I liked. He has 20 years of experience and the patient reviews were glowing. The only drawback was thatIcould not get in to see him until May 18th. The wait will be brutal but I felt confident in my choice.
Early spring 2015, my pain management doctor changed my principal pain medication to dilaudid. We were complying with the new guidelines that suggested 100 mg drug equivalent for all chronic pain patients. How can a faceless entity decide what is “best” for every patient, without knowing their specific circumstances? In reality, they had done the opposite of cutting back my medication, dilaudid is stronger than what I had been taking.
I never once saw the supervising physician at the clinic, I was instead treated by his medical assistant. I was completely fine with seeing the PA.. she was compassionate and intelligent. She gave me a hug after every visit and we joked about retiring to her native Jamaica one day. She genuinely cared about my health, and made it her mission to help me to feel better.
I began taking the dilaudid but my pain levels remained the same. The following month the MA wanted to increase the dilaudid dosage, which required a reduction in the amount of hydrocodone I was prescribed to comply with the 100 mg policy. Without meeting me, talking to me, reading my file, or even examining me, this doctor decided I was not to get any more pain medication. Ever.
That was the beginning of the year that would see a difficult struggle for me, as well as the end of my relationship with the kind MA and the doctor who I never met.
We say those words all the time. After a day of gardening or a trip to the grocery store. It is annoying but not debilitating. We lay down or go to sleep and the next day it is all better. At least until the garden needs tending or it is time to scrub the bathtub.
One day, about 10 years ago, my back pain didn’t go away. After x-rays and eventually my first MRI, I entered the painful (forgive the pun) world of pain management. Several doctors, surgeries, procedures and MRIs later, my pain had accelerated substaintely.
Spring 2015 saw huge changes in both my pain level and the treatments that were needed. At one point not long after, a good friend bought me a journal to record my thoughts in. Because of it’s timely appearance, this notebook was witness to one of the hardest times in my life.
It is my intention to share this journey with y’all. I think it will be therapeutic to both relive and remember these days, but to put them down and leave them behind. Hopefully it will be helpful or at least entertaining to someone. Read the rest of this entry »