On a recent visit with my son’s family, I heard his cell phone on speaker with a call from his 19-year-old panic-stricken daughter Marci crying and screaming fitfully about explosive pains in her head. She couldn’t see, felt like her head was coming apart, and didn’t know what to do. He urged her to get someone to take her to the emergency room in the college town where she was preparing for her sophomore year.
The ER doctors diagnosed her with a “brain bleed” from an “AVM,” or arteriovenous malformation, which had probably been there since birth and had now ruptured. None of us knew about any of that, and we were very frightened as Mom and Dad headed to meet her, and I hit the Internet to learn more. The ER doctors scheduled an airlift to a major hospital 100 miles away, but a group of severe thunderstorms prevented flying, so an ambulance took off with Marci, still screaming in pain.
Awaiting her arrival in the second-best major hospital (the best was full), Mom and Dad were able to convince hospital authorities to let them stay with Marci in ICU, even though she was 19 and viewed by the law as an “adult.” Thus began a 10-day stay, 7 in ICU, while she suffered from unbearable pain and the experts tried their best to alleviate it without getting her hooked on Oxycontin and Fentanyl.
Tests revealed a huge AVM that had ruptured. The blood was the cause of the gruesome pain. Her “bleed” emptied into one very small vein, incredibly slowly. The interventional neurologist who performed the carotid angiogram to get a good “picture” of what was going on in her brain spent about 45 minutes with Mom and Dad and Marci, explaining everything as Dad recorded on video. It was a lot to take in, but they all understood the situation.
Eventually Marci’s body absorbed the blood, and she was weaned off the hard pain meds. The only doctor at the hospital who could do a removal (they call it a “resect”) of Marci’s AVM was out of the country. They suggested treatment with “gamma knife” laser radiation therapy, but they didn’t have the equipment. We were essentially told to pray that it would not bleed again–which we did.
In the meantime, my son and I had been on our own research paths. It seems that an AVM develops in the baby’s brain while still in the womb, and it is fairly common, but I found nobody but medical people who know about it. It’s a mass of arteries and veins that malformed during the baby’s development and, instead of proceeding on to capillaries and making up a normal circulatory system, they bump into each other and form a tangled mass (picture a clump of rubber bands)–which may become a horribly massive mess, as Marci experienced. Some people have AVMs in their brains all their lives and never know it. Others are found when doctors are performing another test and spot it and say, “Hey, what’s that over there?”
The Internet, and especially YouTube, is rife with videos about AVMs, from personal experiences to neurosurgeons actually operating, and to one specific neurosurgeon teaching other doctors how to resect AVMs. Wow! What a treasure trove of information. I sent a link to the “teaching” one, from a posting two years earlier, to Marci’s mom and dad for their information and review.
Simultaneously my son, who has been a physician recruiter for 25+ years and has many medical connections, was all about finding out who is the best neurosurgeon in the country. Both our paths led to the SAME PERSON, and we marveled at this serendipity! This was the doctor who wrote the textbook on AVMs and had personally performed 900+ resections. This was who we wanted to treat Marci, but he was many miles away. I’ll call this doctor and his renowned team “Neuro Center #1.”
My son learned that the Neuro Center #1 had a “Second Opinion” program to review a patient’s records and render an opinion. So he got Marci’s records together, uploaded them, paid the fee, and received the letter, which basically said that they could safely remove her AVM. Wow! We believed that this was a “God thing” in that our independent research had brought us to the same place–apparently the best neurosurgeon for Marci’s AVM.
Amazingly, when that awful bleed was pretty much absorbed by Marci’s body and her pain was pretty much gone, Marci resumed her job for four hours daily, started going out with friends, shopping, and continuing her preparations for her sophomore fall semester. She loved her sorority and was heavily involved in Rush Week and all its plans. She was responsible for a few events and took that responsibility seriously, as she does for all her commitments. She would have eight weeks off in December between semesters, and the general “plan” (really her “wish”) was to have the AVM resected at Neuro Center #1 during that time and not have to miss any school. So she was back at her normal routine and doing very well.
Zoom conferences were scheduled with Neuro Center #1 and with a local neurosurgeon who recommended the “gamma knife,” with its alleged pinpoint accuracy that was used mostly for cancer patients. Marci and her parents had the meeting about the gamma knife procedure, but it might take two treatments, and she would have to be ever-so-careful over several of her youthful, childbearing years. All of this, plus the enormous size of her AVM, created a big negative for our strong, active, lively, and ambitious young woman. Marci and her entire family still preferred a complete removal by Neuro Center #1. The Zoom meeting with them was two days away.
Then, just as before, on a visit to her college, as she stood up from a comfortable chair, an explosion went off in her head! She knew instantly what was happening, called 911, and was taken again to that same college-town hospital. But this second bleed was much, much worse–much bigger, way more angry, and she suffered not only a stroke but perhaps a couple of seizures. The medical staff splendidly performed extraordinary measures. We later learned that those doctors saved her life with “burr holes” and a drain tube that let the blood out and eased the pressure in her brain. Part of her skull was removed during that procedure, but Marci was still breathing!
A medical helicopter and crew rushed Marci and the piece of her skull to the best hospital, about 100 miles away, which had a place for her this time. But even with an excellent neurosurgery department and professionals, the top neurosurgeon there had performed less than a hundred AVM resections, and none were as bad as Marci’s. Things were looking bleak, because Marci was in no condition to travel to Neuro Center #1.
This was August 9, and 52 days since her first bleed, June 18. The “Second Opinion” report had advised of the risk of another bleed. You try not to think about all the second-guessing and what-ifs that usually go on at such a time. Dad was wishing he had just driven her to Neuro Center #1 as soon as she was released from the first hospital stay. She seemed so “normal” then! But such thoughts don’t help. We play the hand we’re dealt. We needed to line up some incredible prayer groups, which we did–across a few continents.
The next 17 days in ICU were torture–for Marci, for Mom, for Dad, for all of us. Mom spent most of the nights at the hospital, and Dad had the daytime shift; frequently they were both there. Marci was barely functioning. It hurt them so much to see her like that, drugged up, hooked up to so many things, with a drain tube coming out of her head, a feeding tube up her nose, intubation down her throat, a ventilator breathing for her, both hands and arms tied down to avoid any damage, and feeling unable to help. She was asleep most of the time, except every hour or less when the medical people came to check on her and perform neurological tests.
Even though she could breathe on her own, she was intubated and connected to the ventilator to give her brain a rest from having to perform all the duties required for breathing. One eye would open a little bit, the other not at all. The critical care team worried about her left side and the stroke damage, and each report of any movement on the left side was exciting for us. She communicated only with a thumb up or down. She seemed to be “with us” and Mom and Dad knew she was “in there.”
Then pneumonia hit. Fever, further weakness, more despair. It seemed Marci was taken for test after test, but nothing was getting better. The pneumonia finally calmed down, as they suctioned junk from her lungs because she was unable to cough it up, but she still ran a fever, cause unknown. Another carotid angiogram showed that the AVM had a bit more space around it, which would help with resection, but her brain was still pretty inflamed. A lethargy remained constant, and the doctors didn’t know what was causing that, either! Worrisome, so worrisome.
Her 17-year-old sister was afraid to see her beloved Marci in that awful state, and she didn’t want to remember her that way, either. She was torn, and her parents didn’t push her to visit, but she ached inside, missing her. Her dad told me, “No one should see her in this condition, and Marci wouldn’t want it, either.” Both girls are amazingly beautiful, inside and out.
Marci had excelled in everything she did, especially sports. She had been hit in the eye with a softball thrown from a short distance in a poorly lit indoor facility. Earlier years saw her rolled over and tumbling around in soccer games, and she was involved in some kind of activity all the time. She was tough and strong, but who would know it now? Strong faith is required to know that Marci is “in there” and is coming back to us, and Mom and Dad KNEW. Many tears were shed, at the hospital and by all of us on family communication and prayer chains, as waiting for improvement became increasingly difficult. I felt that the only solution was to get her to Neuro Center #1. With help from the hospital ombudsman and the social worker, things began rolling in that direction.
Miracles soon came, and swiftly, as they often do. A corner was turned! Marci’s breathing tube was removed and she now has a successful tracheotomy. She tested well off the vent. What a relief to get that tube from her throat! With her special “helmet,” she was able to sit up in a chair. She knew who and where she was and who was with her! Fever gone, pneumonia gone, steady improvement, and thanks to God from everywhere! The well staffed and equipped “medjet” flight was scheduled and Neuro Center #1 was standing by.
Marci’s youth and spirit are fighting hard and helping the doctors, who are amazed by her rapid progress. Prayer teams are getting stronger than ever. She’s back in the chair for a second day, getting physical therapy for her legs, arms, and joints, and she’s working hard and powering through, even though it hurts like hell. Her nasal feeding tube is gone, and a “G-tube” is in her stomach for much more comfortable nourishment. Hooray! No more equipment around her beautiful face.
And the update will require another article. She DID make it to Neuro Center #1. Mom rode on the medjet and Dad drove out for the multi-week stay and serious PT. Marci stayed an entire year in recovery and rehabilitation, and LOTS of prayers made it possible. Mom and Dad alternated a month at a time staying with her while her sister helped take care of things at home during that difficult year.
Through determination, lots of GRIT, thousands of prayer groups working hard, and help from God, Marci graduated from college with her original class and continues to work to restore the damage from the stroke. It’s amazing, miraculous, and completely inspirational.
Thank You God.