Please meet Greg. Greg is originally from Guttenberg, Iowa. He was a RN at St. Luke's Hospital in Cedar Rapids, Iowa until moving to Phoenix for work in May 2013. His symptoms started in August and he was diagnosed in September. He was referred to Barrow, not knowing their reputation. His neurosurgeon brought in Dr. Spetzler (not knowing him either) to perform his surgery. He Googled Spetzler and was in shock that he was miraculously placed in the best hands in the world. Three weeks leading up to his surgery, his malformation grew from 2cm to 14cm. He is7 months post surgery and has had a long road to rehabilitation. After the surgery, Dr. Spetzler said that he could not have made it any more difficult and it was one of the worst surgeries he has ever done. His bleed had stopped and started again before the surgery.
His wife began a blog to chronicle their journey; Greg vs The Braincloud. Greg contributed the name. He chose it because his wife loves the movie Joe Vs. the Volcano and he thought he could tell their families that he had a braincloud. Him and his wife are brutally honest about their journey and write frequently about their faith.
Below is Greg's story, written by him personally.
The only thing in my medical history was a broken arm as a toddler and tonsils removed in my twenties. I was in pretty good health prior to this. I moved to Arizona in May as a travel nurse and my wife and 2 kids moved in August. Before they got here, I moved our things into our apartment and shortly after that, my symptoms began. My right hand began to tingle, like it was asleep. I have had tendonitis in the past and thought that was it. Then it traveled to the rest of my arm. Shortly after that, my right leg began to tingle. As a nurse, I assessed that I was getting older, as a 35 year old, and pinched a nerve or herniated a disk in my back when I was moving our household items. I went to a urgent care desiring muscle relaxers to help my back and went to a massage therapist who found lots of knots in my right shoulder and back.
I was having ringing constantly in my right ear and numbness on the right side of my face and balance issues. I would lose my balance if I turned too fast or get tired. It was like the world took 2 seconds to catch up to me when I turned my head. I was told I had to go to a neurologist to get any back relief. I bit the bullet and saw one. He said it was probably a pinched nerve but wanted a spine and brain MRI. I went with the spine MRI and assumed it would show the issue there and no need for an $800 brain MRI. An hour after the MRI, the neurologist called me and said I had a lesion at the base of my brain and needed the brain MRI, which showed the mass. He threw out terms like cancer, MS, or gleoblastoma. ALL KILLERS. My wife, a physical therapy tech, and I have worked with patients like these and had enough knowledge to be freaked out. After that, we were referred to an oncologist and neurosurgeon.
We saw the oncologist first and they did not know if they could even biopsy the mass. They told us 10 weeks of radiation/chemotherapy 5 times a week. I knew I could not survive that. Then, the same afternoon, we went to Barrow. We were lucky to get Spetzler. He saw us and told us that I had a 90% survival rate and could take up to one year to fully recover. He said I could wait a couple of months and have another MRI or do the surgery. He said with my age and health, that he recommended the surgery route. My MRI showed that the bleeding stopped and he told me I could bleed again but that if it did, I would never get back to my previous level of function. I could start to get better but never get to original state of health and could get worse if bled a third time and progressively get worse in my level of function and never recover fully. So, I took the surgery route. He was very frank and said I may have to have a tracheotomy, be on a ventilator, have a feeding tube due to swallowing issues, and probably need physical rehabilitation. Spetzler is a very confident doctor, as he should be, and every other doctor and therapist I worked with would say if Spetzler said I would recover fully, then it would happen. They all know that what he recommends, you take as GOSPEL. After seeing the results, I would do whatever he says. It is scary but he is the BEST.
My rehabilitation was at St. Joseph's Hospital in the neuro-rehabilitation unit. They were all amazing there. From the housekeepers to the nurses and therapists. After the surgery, my eyes were literally spinning in circles. It was like I drank a bottle of vodka in 5 minutes. I was puking anytime I opened my eyes. It took 4 people to reposition me in bed. I was off the ventilator immediately after surgery, calling for my wife. Apparently I am a mean drunk off the anesthesia. No tracheotomy needed and I was sipping ice chips the next day so no feeding tube and spent 4 days in ICU. Spent from October 11-29th in the hospital. The rehab was intense. 3 hours a day for 2 weeks. I started with a walker and that was difficult. I had facial drooping on my left side and nerve pain and weakness on the whole right side of my body. My left eye had nystagmus so I could not focus and had a patch and the eyelid would not close so I had to have it taped at night. I had cognitive therapy because I had memory issues with short-term tasks, due to the surgery. I difficulty in busy rooms trying to concentrate as well. I had no other cognitive deficits. My mind was intact, which was a fear of mine. I have worked with lots of stroke patients and I did not want to burden my wife with that.
The therapists there were great. They are fully invested in the patient. My 4 year old daughter was there every day with my wife at my therapy sessions and they would have my daughter participate in the exercises with me and even came to her birthday party last month. We did aqua therapy in the pool, which helped with my balance because I would get dizzy and not getting my left eye to work with my right. We did kitchen cooking and even walked to a coffee shop to go through real life situations because you know that doing something in the gym is way different than at a grocery store.
I also spent 2 1/2 months in outpatient therapy. When I left the hospital, I was walking with just a cane but it was awkward and slow-going. It was a long road; it was difficult and slow. It has been 7 months since my surgery and I am going back to work as a nurse on Monday. I am driving a car with no adaptive equipment. I still have ringing in my left ear but no permanent damage in either ear. It should go away eventually. If you looked me, you could not even tell I had any facial droop. My left eyelid still won't close all the way and I tape it at night but I can almost fully close it if I consciously try to blink and no permanent eye damage. I have nerve pain on my right side of my body and cannot feel hot or cold. It only registers as pain. I am on Neurontin, a nerve pain drug, but it fogs your brain and I would be drowsy most of the day so I would rather deal with the pain and have a sharp mind. I hate running but I am running a 9 minute mile and getting some of my strength back. I have not lost any dexterity in my right hand.
It has been a slow process but I should not be around. After the surgery, Dr. Spetzler said that I could not make it any more difficult and it was one of the worst surgeries he has ever done. As I said, my malformation grew from 2cm to 14cm in 3 weeks. My bleed had stopped and started again before the surgery.
I am so glad we got in touch and you (Jamie) are helping others. At first, I felt very alone with things and didn't know much about my diagnosis which instilled a lot of fear and self-pity. I hated my son's classmates watching me walk with a walker or pushed in a wheelchair for long distances in the mall after I was initially home because I had no stamina. I felt my dreams were gone. I thought I would never walk my daughter down the aisle or go hunting with my son or grow old with my wife. I am struggling everyday, but I want to be honest in my journey. I am worrisome until I get my MRI in October, thinking any new muscle twitch or headache is a new CM.
I also know God put me here at this point in my journey to help others. With my CM and how much it bled, I should not be alive, let alone making a full recovery.Thank you for contacting me Greg. I value all the advice you have given me and pray for your continued recovery,
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