Stem Cell Research, Part 2, aka Who Knew!

When I wrote the first stem cell research post (http://stroketales.blogspot.com/2013/03/stem-cells-embryonic-and-otherwise-aka.html), I was skeptical. The Big Maybe Not, I said. But I am less so now. Most of the scamsters and shysters who claimed to have stem cells have been arrested or are purposely missing. There's something afoot and it means possible dis-ability for so many of us who are brain injured.

The most recent news came in June of this year from the 15th annual International Society for Stem Cell Research (ISSCR) meeting in Boston. The group included more than 4,000 stem cell scientists, bioethicists, clinicians, and industry professionals from over 50 countries who discussed the latest discoveries and technologies within the field, and how they are advancing regenerative medicine, including stem cells and cancer, disease modeling and organogenesis, gene editing and gene therapy, and potential breakthrough therapies currently being tested in clinical trials.

Said ISSCR president Sally Temple, “Discoveries are moving forward quickly, with developments that are changing the way we view and treat disease. That has tremendous implications, not only for scientists, but also for regulatory bodies, industry, and patients.” 

In addition, prior to the meeting on June 13, a Public Symposium organized by the Harvard Stem Cell Institute (HSCI), was held as well in Boston. It was advertised as “Innovation, Incubation, Investment: The Landscape of Stem Cell Research in Boston,” and featured local leaders in the stem cell community.
 
Then about one year ago, Sonia Coontz, who had a stroke in 2011, recovered her right side in a Stanford clinical study in 2016. Injecting human, adult stem cells directly into her brain, along with other chronic stroke patients, proved not only safe but effective in restoring motor function. 

Now 36, Coontz, said, “My right arm wasn’t working at all. It felt like it was almost dead. My right leg worked, but not well. I used a wheelchair a lot.”

After her surgery, "they woke up,” she said of her limbs. The promising results set the stage for an expanded trial of the procedure now getting underway. Dr. Gary Steinberg, who has more than 15 years’ worth of experience in work with stem cell therapies for neurological indications, is the research paper’s lead and senior author.

“This was just a single trial, and a small one,” cautioned Steinberg, who led the 18-patient trial. 

“It was designed primarily to test the procedure’s safety. But patients improved by several standard measures, and their improvement was not only statistically significant, but clinically meaningful. Their ability to move around has recovered visibly. That’s unprecedented. At six months out from a stroke, you don’t expect to see any further recovery,” said Steinberg.

There's more. A recent study involved donor stem cells grown in the lab and delivered through an IV to stroke patients. Dr. Ken Uchino, a stroke neurologist at The Cleveland Clinic, said, “The stem cells are believed to change the immune response of the body to the stroke. And it will turn down the immune response so there is a better healing environment.” 

The study involved 129 patients, half of whom got the stem cells, and half the placebo. The study discovered the patients who got the cells within 36 hours of stroke onset had less disability and more mobility after stroke.

Check out new studies at www.clinicaltrials.gov. Put "stem cells" in the search bar and away you go. 

The Big Maybe Not has turned into The Big Maybe So.

If You Don't Exactly Hear, You May Be Exactly Screwed

So this is what happened two days ago. I went to the market with my aide and (I approved) her two-year-old, adorable, blue-eyed Sophie because Katie, her mother, didn't have a babysitter. We don't go shopping when she rarely brings Sophie, but she is so behaved, a problem was the furthest thing from my mind.

Sophie walked (let me be clear--WALKED) around the gargantuan Giant Eagle supermarket. We got the needed items, hung the bags on the back of the wheelchair with me in it, and Sophie started to rub her eyes, a sure sign that she would take a nap once she returned to the car.

We left the store and arrived at the car, and Katie said, as she always says, "Don't get up from the wheelchair. The bags are heavy and I have to remove them first." And then added, for a first time, "I'm going to put Sophie in her car seat before I take the bags off the wheelchair."

The parking lot was a noisy one, plus an anxious driver with a muffler issue stopped a few feet away to get the spot Katie would soon vacate. Katie opened the trunk, and then went around to the other side of the car to place Sophie in her car seat. (See the problem yet?)

I didn't accurately hear those instructions. I heard Katie speak, but the words were indistinct, just like the adults in a Peanuts movie. (Wah wah wah). The trunk was open and I was texting on my phone, so I figured, albeit erroneously, that the bags were already in the trunk, and I stood up. As I arose, the wheelchair went flying backwards from the heavy bags and I went along with it, landing on my right side and hitting my arm, neck, and head on the blacktop. When I stood up, assisted by a stranger and Katie (the crowd, fifteen strong, had gathered), I saw the blood on my hand and realized I was cut and my finger was out of the joint.

It wasn't Sophie's fault. It wasn't Katie's fault. It was my fault. The hearing aid had diminished slowly over time, and I was trying to stretch out the shelf life to get a new one in Portland. (If you follow the blog, you know that I'm moving there). 

The rest is all a blur. I went to the Emergency Room and the nurse put on that neck brace pictured above, just in case I had injured my spine and head. I was tested via CT scan and the results were negative. But the X-ray showed a fracture in my finger. The doctor said I should follow up with an orthopedic surgeon (I went and a splint was put on my hand, just days away from the Portland trip).

So, all of this is to say, yeah, hearing is an issue and not one of the usual top five reasons that a person gets injured in and around the home. Slips and falls, often-silent choking, adverse effects of medication, hazardous fire, and severe cuts are the ones most "perennially" written about. But hearing is on my list. 

If you can't hear accurately, let's say, the fire alarm or a siren or the alarm clock or, in my case, instructions, then bad things might happen. Very. Bad. Things. Is your hearing ok? If you have doubts, I suggest you get a hearing test from an audiologist and maybe you'll be surprised at the results.

Want to Join a Class Action Lawsuit about Faulty IVC Filters? Kirkendall Dwyer is Handling Them.

In America, litigation rules. Some people sue frivolously, like a woman who was burnt by McDonald's coffee that was too darn hot (she won) or a man who sued a beach-front hotel after he was knocked over by a wave (he lost). But the majority of the lawsuits are worthwhile and about personal injury. Take my IVC (inferior vena cava) filter which came from my DVT (deep vein thombosis), for example. But first, a little background.

Two weeks before I had my stroke on that fateful day, April 8, 2009, I called my friend, an orthopedic surgeon, to ask about my foot and leg pain.

"If your pain continues, and it goes up to your knee, and even higher, go to the Emergency Room," he said.

The pain was going strong, and before it got up to my knee, I went to the ER. The ER doctor did some blood tests and an ultrasound, and he came back with the results.

"You have blood clots in both legs. I'm going to have to admit you." I was in New Jersey at that time.

All right, I said to my inner psyche, don't panic. The blood clots don't mean a thing. I took the day off from work. [I found out for sure 3 years later that Avelox, an antibiotic known as the family of  fluoroquinolones, could produce blood clots]. I was in the hospital for a few days and went back to the law firm, Cozen O'Connor in Philadelphia, where I was a Sr. Technical Trainer. The following week, I went to a hematologist in Philadelphia and he discovered my platelets were practically non-existent. But the trouble was nobody connected the dots. The doctors operated in a void.

When I had the stroke, though I was unconscious, it was told to me later by my son that I had blood clots in every extremity (arms and legs). So the doctor at Capital Health located in Trenton, NJ, put a Greenfield filter in my groin [there are many kinds of filters that all do the same thing] to catch the clots from going up to my lungs, heart, and brain. Resembling a windblown, useless umbrella, this is what it looks like. (Greenfield filters were recalled in 2005. A Greenfield filter was implanted in me in 2009. Was the defect solved? I don't know, and that right there is an issue, too).

I was unconscious for 8 days, and when I awoke, my sons, the youngest playing the guitar at my bedside, and my partner (whom I left after 17 years, but that is another story for another time) were waiting. It's all in the book. (The Tales of a Stroke Patient by yours truly, available at Amazon -- https://www.amazon.com/Tales-Stroke-Patient-Joyce-Hoffman/dp/1479712493/ref=sr_1_1?ie=UTF8&qid=1475474432&sr=8-1&keywords=the+tales+of+a+stroke+patient)

Anyway, now 8 years later, I joined a class action lawsuit a few years ago sponsored by Kirkendall Dwyer. The reason I joined the suit was I read a lot of cases where the filters moved and it got me antsy. I received a letter from Kirkendall Dwyer in November 2016 and here is what it said:

------------------

Dear Ms. Hoffman,

As you recall, Kirkendall Dwyer LLP represents you in a lawsuit related to your IVC Filter device. I am writing to inform you that we received the medical records in your case. They show that on 04/08/2009, you were implanted with the VENA TECH manufactured by BBRAUN. We are pursuing a claim related to that product.

It is very important that we have a current treatment history. Please let us know if a have had any of the following Injuries after the IVC Filter placement. [I had a pulmonary embolism, #4 on Rafael's list, a couple of years ago]

     1) Perforation of the inferior vena cava or any other organ
     2) Migration of the IVC Filter Implant
     3) Fractured, broken or shattered IVC Filter
     4) Embolization (Blood Clots)
     5) Ischemic Stroke (Stroke caused by a blood clot to the brain)
     6) Tilting or slanting of the IVC Filter
     7) Heart or Lung Injury caused by the IVC Filter

If you continue to have problems associated with the IVC Filter, then please schedule an appointment as soon as possible to have your problems evaluated. During your appointment, please be thorough in explaining your complications.

If you have any questions, then please do not hesitate to call the office.

Kind regards,

Rafael Pena Costa Jr.
IVC Filter Case Manager
(214)271-4027, Ext 7048

RCosta@KirkendallDwyer.com

------------------

Since I couldn't travel to Kirkendall Dwyer which is in Houston and Dallas, TX, Rafael kept in touch with me by phone. Then last Friday, I received a letter that was a report from the radiologist who was hired by the lawyer as an expert that said there was a perforation in my inferior vena cava [#1 on Rafael's list]. So I stopped doing the stationary bike until I saw a vascular surgeon who specializes, in part, in the treatment of disorders of the vascular systems, that is the body's arteries and veins.

I saw the surgeon three days later and I showed him the letter from Rafael and the report from the attorney's expert radiologist that said, in essence, my vein had been perforated by the filter and that warned the surgeon that an operation to remove the filter was needless.

"Forget that you have it," said the surgeon. "The filter is supposed to be permanent and there is no way to remove it because the filter and your vein are one." Then he pointed to the letter and showed me where the radiologist referred to my filter and my vein as occluded (dictionary definition says "taken into and retained in another substance." That's where filter and vein are one come into play.

"You may die on the operating table. Besides, 89% of the people have perforated veins from the filters." His eyes kept darting back to the lawyer's letter.

I believe the lawyer's letter and the radiologist's report are what colored the surgeon's thinking. Doctors hate lawyers' letters.

A few medical professionals in Pittsburgh know about the lawsuit. Word travels fast in the Steel City. But I'm going out to Portland, OR, next month to live near one of my sons. I'll see a doctor in Portland, or Puddleton as it's sometimes called [all that rain--get it?], without mentioning the lawyer. That way, I'll get a straight answer. Word of mouth will probably die when it crosses the Rockies.

So call Kirkendall Dwyer if you have experienced any of the items on Rafael's list. What do you have to lose? I'll answer that. Nothing!

(RETRACTION: The attorney's aide of Kirkendall Dwyer called me last night to tell me he appreciated the post, but the filter was a BBraun, not a Greenfield. He said they don't handle Greenfield filter cases because they don't cause that many problems. However, the BBraun is right up there causing problems as stated in Rafael's list above. Even though the filters do the same thing--catch blood clots, my error came about because that filter information is the only thing I was told from the start of the stroke. So Greenfield filter, thumbs up; BBraun filter, thumbs down).

A Review of Stroke Books, and The 3 Things I Didn't Have When I Had My Stroke

I finished all three and very different books about strokes as promised: a brain stem stroke, an ischemic stroke, and a hemorrhagic stroke. Here are my reviews, with a few thoughts at the end on what I was missing when I had my stroke.


1. The Calm Before the Storm: A Stroke Survivor's Story by Delanie Stephenson

Delanie's major concern when she had a brain stem stroke at 33 in Virginia was, who would take care of her two young kids before unconsciousness set in with her words, Then everything went dark. Her sister had a stroke, too, a hemorrhagic one, so the strokes were probably hereditary rather than coincidence. She uses religious undertones all through the book in prayers to God, invoking Him for help with the loss of her ability to walk and speak. Delanie has humor in the book as well as she described her embarrassing moments in graphic detail. There was much support, including her mom, her sister-in-law, friends and, of course, Curtis, her husband. She was in rehab for months and the doctors called her "a miracle." She suffers with PBA (pseudobulbar affect when one cries and laughs at inappropriate times) and has been working with a neurologist as of 2013, and her strength and balance are returning. As the book ends, she offers these words: But with God's help, the love of my family and friends, and lots of hard work, this storm too shall pass. Yes, it will, Delainie.

I give this book *****. 

You can find Delanie's book at Amazon: https://www.amazon.com/Calm-before-Storm-Stroke-Survivors-ebook/dp/B00DRDO9WW/ref=sr_1_14?ie=UTF8&qid=1495995331&sr=8-14&keywords=the+calm+before+the+storm

2. Stroke After Stroke: A Rower's Pilgrimage by Barbara Polan

Barbara thought she was too young to have an ischemic stroke at 52 (she was correct) when she in great physical shape and had a profession--managing editor of a newspaper--she loved. She expected tomorrow to be like today. She masterfully weaves rowing on a gig boat in Gloucester Harbor all through her book about the stroke. Her goal is to be able to row again. She suffered at the time the book was published in 2014 from anosognosia, as defined by a neurologist as "not understanding the extent or significance of one's deficits," i.e. she didn't know her limitations caused by the stroke. Barbara lost the use of the non-dominant side (left side), but she was fortunate in that respect (she is right-handed). Barbara focuses on exercise repetition, and she has tried, among other things, the Eastern practices of Kundalini Yoga, chanting Buddhist 'nam-myo-ho-renge-kyo' for15-minute daily sessions, acupuncture in the ear, psychotherapy, and aquatic therapy. She said she is happy and well-adjusted, although not complacent or accepting of my limitations.

I give this book *****.

You can find Barbara's book at Amazon: https://www.amazon.com/Stroke-After-rowers-pilgrimage-ebook/dp/B00NDF3BH8/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1495999076&sr=1-1&keywords=stroke+after+stroke

3. Love Stroke: Stroke Recovery and One Young Couple's Journey by Kelly and Brad Marsh

The book is actually written by both Kelly and Brad, which I find a fascinating thing in and of itself from a young couple. Kelly, 36, was ill in Cincinnati after she returned from a trip to New Orleans. The both went to the hospital and she was put in the ICU, and when he wanted information about Kelly, a nurse told him, Nothing good happens fast in the ICU. Soon, a doctor confirmed ongoing bleeding in the brain which needed surgery. Her mother was there to help, but Brad, her life-saving point person, kept precise records of her medications, insurance (if filled out incorrectly, it would delay her rehab), doctors, and even the nurses and aides on duty. The book is a moving account of what people can do to help themselves, even after a hemorrhagic stroke, with helpful tips following the chapters. By working hard, she and Brad now have gone on vacations, something Kelly did not think possible early on. Some of the proceeds from the book are going toward the foundation the two of them started--A Stroke Forward, giving young and old stroke survivors, other traumatic brain injury survivors, and their caregivers the resources for their recovery.

I give this book *****.

You can find Kelly and Brad's book at Amazon: https://www.amazon.com/Love-Stroke-Recovery-Couples-Journey-ebook/dp/B01MREGL1A/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1496011684&sr=1-1&keywords=love+stroke

Now, the 3 things I didn't have when I had my stroke:

1. I wasn't married (although my partner of 17 years considered us a married-ish couple) so I didn't have support that was even remotely close to what Delanie, Barbara, and Kelly had with Curtis, Tom, and Brad.

2. They had friends. Most of my friends left me once they saw what they thought would become of me. But I fooled them. I am now walking, albeit with an AFO (ankle-foot orthotic) and a cane, and I am no longer depressed, moody, and weeping. Sure, I get frustrated some times, but doesn't everybody to some extent?

3. They all had family members to help. My two sons lived far away and they visited me as often as their careers would allow. My parents are dead. That is why I'm moving to Portland soon to be near one of my sons as soon as this "medical condition" is cleared up. The foreboding doctor's call came on Friday and that "medical condition" is the subject of my next post. Stay tuned!