Progress in Steps Rather than Miles: Stroke Rehabilitation and Recovery

Recovery shouldn't be this hard. If only the stroke world solved the neuronal cascade of death by these 5 causes in the first week and prevented that damage there would be much less dead and damaged neurons. By they won't unless we destroy the existing stroke associations and recreate them for survivors, not doctors.
http://newswise.com/articles/progress-in-steps-rather-than-miles

Article ID: 659464
Released: 19-Aug-2016 4:05 PM EDT
Source Newsroom: American Association of Neurological Surgeons (AANS)

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American Association of Neurological Surgeons, neurosurgery awareness, Stroke, patient story

Newswise — Michael Tarling began the conversation by rattling off a series of life-adjusting events the way some would rattle off a grocery list: “stroke, emergency (room), tPA, clot, hemorrhage and then a hemicraniectomy.”
Tarling was 55 at the time of his stroke, and had no prior warning signs. Despite a trip to Mayo Clinic, taken in hope of finding the ‘why’ behind his stroke, he is no less in the dark now than he was 14 months ago when it happened. “I was told that in 15 percent of cases, they are unable to identify a root cause. Unfortunately, I am in that percentage.”
A hemicraniectomy removes half of the patient’s skull, helping to relieve post-stroke pressure caused by the swelling brain. Often families who are faced with the decision of medical consent for a hemicraniectomy try to guess what the patient might want done. In Tarling’s case, he was doing research on the procedure from his hospital bed.
The idea of the surgery came up fairly quickly, but Tarling and family had a little time to absorb the suggestion and decide. “the doctors spent time talking with us about the procedure. They told us that if we didn’t move forward with the hemicraniectomy, we’d be risking the other half of my brain. We decided in favor of the procedure.”
“Ten days after the surgery,” Tarling said, “I was released from the hospital to go to rehab, wearing a crash helmet to protect my brain because part of my skull was now missing. When I arrived at Rehabilitation Institute of Chicago (RIC), I could do nothing. I couldn’t even really sleep. I started doing therapy three to five hours each day and kept at it for ten weeks of in-patient treatment. Those were exhausting days. The therapists worked with me to get my body moving. All I can say is that it does get easier.”
When asked if he felt self-conscious about the crash helmet, necessary to safeguard his unprotected brain, Tarling said that he was more uncomfortable about the required wheelchair. He was dismayed at the general public’s response to someone in a wheelchair, feeling ignored to the point of invisibility. “it made me think of whether I had, in the past, treated someone in a wheelchair similarly.” A crash helmet was the least of his post-surgical image issues.
“RIC has a peer volunteer system that is very good indeed. I recommend that, should you find yourself in this situation, you avail yourself of all possible sources of knowledge, as I did. That said, I think the best information came from my peers. At RIC, volunteers just walk around the hospital and are there for patients to speak with. It is more than helpful to be able to have a conversation with those who truly understand what a rehab patient is going through because they’ve gone through it themselves.”
After the 10 weeks at RIC, Tarling had graduated to a single-point cane and was able to manage stairs when a right-side handrail was available. He was able to go home, began outpatient therapy and enrolled in an intensive walking study, which tried to correct bad habits acquired post-stroke and surgery and to speed up his recovery. He still has drop foot and is dragging his left leg forward; however, when he looks back over the months, he can see improvement. “I can’t see it over days or even weeks, but if I look at the months … then I can see progress.”
While Tarling’s speech seems unaffected to the untrained ear, he believes that his diction has suffered and that he isn’t quite as loud as he had been. Given his job involves speaking before large groups, he works with co-workers to be certain that his volume and clarity are the best he can deliver.
“After three months, I needed another surgery to replace the missing skull section. This time I had the opportunity to research and select my neurosurgeon, rather than in an emergency situation. I chose Joshua Rosenow, MD, FAANS, from Northwestern Memorial hospital. Dr Rosenow came to my hospital room at RIC and spent nearly one and a half hours explaining the cranioplasty procedure, advising us that he preferred to use a prosthetic piece for the skull rather than inserting the piece of skull that had been removed.”
Joshua Rosenow, MD, FAANS, who was Tarling’s surgeon commented, “I chose to use the prosthetic cranioplasty instead of Tarling’s own bone because the first operation was done at a different hospital than the second. Given that reality, I didn’t want to ship the bone, risking the chance of infection.”
Tarling is incredibly grateful for Dr. Rosenow’s skill, bedside manner and sense of humor. Having a surgeon with all of those attributes was a huge advantage.
Current pre insurance estimates put Tarling’s hospital bills in excess of a million dollars, and he credits his employer, Boeing, for providing him with both good medical benefits and a caring, compassionate attitude. “In the hospital, I was visited by the CFO who reassured me that my job just then was to recover and that my job at Boeing would be waiting for me. Having the return to work as a goal helped with therapy: I couldn’t wait to get back to doing what I loved to do as a risk manager. It has taken some doing, but I’m back part time and delighted to be there.”
Tarling also credits his recovery to his family, especially his wife. While he was doing in-patient rehabilitation, she was there, paying attention, taking notes, encouraging him and advocating for him. “Even now she is still pushing me … in the nicest way.”
“I have no functional use of my left hand or arm, which is more of an issue for me as I was left handed. But I’m learning to sign right handed. I think that it looks like a one-year-old wrote it, but it is a signature. Should you find yourself in my shoes, I really recommend getting as much therapy as you can and tackling it with as much effort and patience as you can muster. Even if progress seems slow – or unnoticeable – keep at it. And,” Tarling commented, “find yourself a peer program.”
Dr. Rosenow observed that Tarling’s best fortune arrived almost simultaneously with his stroke. His stroke was recognized swiftly by those around him, which Rosenow attributes to the good that has come from public education about stroke symptoms and the importance of emergent treatment.
“Neurosurgeons continue to play a large role on the front lines of emergent stroke treatment through such things as endovascular clot retrieval and placement of stents to open blocked arteries, open surgery to relieve narrowing of the carotid arteries caused by atherosclerosis, and decompressive surgery. Tarling’s recovery is a tribute to both his personal determination and to the amazing strides neurosurgery has made in the treatment of stroke and the mitigation of its side effects,” concluded Rosenow.
Neurosurgery Awareness Month: Observed each August, Neurosurgery Awareness Month brings focus to a variety of neurosurgical conditions and treatments, as well as on neurosurgeons themselves. Additional materials may be found on the AANS.org website, http://www.aans.org/Patient%20Information/Neurosurgery%20Outreach%20Month.aspx.