A Stroke Of Luck


A new ‘cranial event’ has popped up (pun intended ) and I need to have cranial reconstructive surgery, again.
Judging by my goofiness, we all know that I’ve had a screw loose.

  • Now, it is confirmed, but I actually have a few loose screws.
    (Accepting all jokes.)
    *Exactly 14years ago, (June1 2006) I had the 1st. of four craniotomies (skull removal) :face_vomiting: resulting from my 2nd brain aneurysm rupture.
    Apparently, they did not fully put Humpty Dumpty back together again.
    *Recently,Last winter (2019), after discovering a few protrusions on my head and after consulting with a couple neurosurgeons and neuroplastic surgeons at Penn and Jefferson,(Phila. my home town) the opinion is that we must definitely address this hardware issue ASAP.
    After doing some extensive research with my best friends, husband Steven and Siri,
  • We found that Johns Hopkins has MACC, The Multidisciplinary Adult Cranioplasty Center.
    *cranial reconstruction is all they do!!!
    ** But, let’s back up a little…
    Through the years, many people have asked about my “strange condition“ and why I am now paralyzed (left side)
    *Without having to repeat this so many times, and to make {it} as simple as possible, the following is my long, complicated history. And I still need your support and prayers…
  • Back up to Spring 1988.
    *After complaining to my doctor about decades of migraines, I also described a tingling sensation on the left side of my face and down my left arm.
    *Went for my first CT scan which showed a large AVM
    *I was 28 with 1 year old twin babies.
    I knew nothing bad could happen, and, 32 years later, NOTHING HAS.
    *Steven and I consulted with several Neuro-specialists here in Philly and then all over the country.
    *For what became 16 years, we traveled all over having different procedures to try and obliterate the AVM.
  • I had countless Arteriograms-catheter inserted in main artery in my groin, weaved up to my brain, dye shot in andCT scan -like pictures pinpoint the exact location, size, depth, etc. of the AVM. (I will be having another one in the next few months.)
    *1988-1991](tel:1988-1991), four embolizations-(through a similar catheter up to my brain, they shot in crazy glue to seal off the vessels that could be safely reached.)
    *Are we getting the pattern here? Crazy glue? Loose screws?
    I guess I have a great excuse!
  • During these demanding years, I was always well supported by my family, friends, and coworkers. (I was a special education teacher in Philly)
    *1992, Gamma Knife Stereotactic surgery-through a colander-like helmet/frame secured to my skull, radiation was directed at the malformation with the intention of irritating the vessels involved so that they would scar.
    *While I was a good candidate for this procedure, unfortunately, it did not work. *Finally, in the fall of 2004, while getting ready for work, certainly running late,
    *I developed an extraordinary migraine and dropped to the floor.
    No movement on my left side.
    *I screamed for Steven who called 911… *taken to Abington(local hospital) then medi-vaced to Penn where they were able to stop the hemorrhage without surgery.
    *After six months of intense rehab at Penn and Moss in Elkins Park.
    -After six months where my sweet Holly (Daughter)
    would climb into my hospital bed with me every day to keep me warm and comfy…
    -After six months of my brother, Danny, calling and singing Puff the Magic Dragon as he did when we were kids…
  • After six months of countless friends and synagogue members dropping off dinners, love, hugs,support, and prayers.
    *Surely A STROKE OF LUCK to have lived and to realize the goodness and generosity in people, some of whom I hardly knew.
    We had the most awesome brisket, chicken soup, and so much more.
    -After six months of dear friends visiting and bringing over anything we needed…
    Six months after My Synagogue Cantor, Howard Glantz would call or visit at Penn and Moss to sing, in his most soothing voice, the Mishabeyrach (Jewish prayer for healing) and other popular hits​:musical_note::notes:
    -After six months of my incredible friend and coworker, Theresa Ebersole - AKA Ebbie, would visit, call, drop off goodies, and continually keep me up-to-date on my students at school.
    -After six months of My Most Of All, My Lifesaver, My Hero, My Happily Ever After, and My Every Spectacular Word Under The Sun, My Steven Max slept on a sofa in my hospital room and cared for me like the princess my daddy always told me I was meant to be …
    AFTER SIX MONTHS, I was discharged and literally walked with just my cane, into *Pennypacker, MY SCHOOL. All good!!! A STROKE OF LUCK.
  • I actually experienced a bit of relief thinking that the bomb finally blew up and I was good to go. But AVM was still there.
    *Winter 2005- Boston -Proton Beam Radiation, Constant CT, MRI scans…
    All of the best surgeons still agreed that surgery to remove the malformation would still be too dangerous at that time, and even though these procedures did not eradicate the AVM as we all hoped, there was a great possibility that the AVM could’ve shrunk, making any ultimate surgery easier.
    *Unfortunately, exactly one and a half years after my first stroke,
    *June 1 2006, while getting ready for work again, *BOOM! Same thing. Ambulance to Abington where the chopper was waiting to take me to Penn.
    This time I was unconscious and Steven knew this time was very different. - Surgery, the right half of my skull was removed in order to access my brain and stop the hemorrhaging. Since, with this type of surgery, the skull is sometimes placed in the patient’s belly so that it stays in its own fluids/ environment, I was able to get a tummy tuck…NOTT🤒
    “My skull” had to be kept in the freezer for two months while I donned a gorgeous helmet.
    *No tummy tuck? I want a refund.!!!
    *After two months, the swelling went down, the blood was absorbed, and at a second surgery, Drs. removed the Arterio-Venus Malformation and replaced my skull (right side) (AVM) then returned my skull.
    *It is actually THIS surgery that caused the paralysis on my left side.
    I know, you are, too. :laughing:
    *So, now, we meet Dr. Chad Gordon(neuroplastic surgeon) and Dr. Judy Huang (neuro surgeon) at Johns Hopkins where, at their cranioplasty center they only do this type of surgery (cranial reconstruction). My head has been compromised by the two radiation procedures.
    *We will figure it all out; we always do.
  • Currently looking into eBay and Etsy to sell the titanium, screws, plates and bone when they re-construct and replace.
  • And, while I have had two aneurysm rupture\strokes, I really had
    The Love, prayers, and support from my family and friends, from my doctors and therapists, from my amazing Facebook family, has held us together better than staples, screws, and glue.
    Thank you for continuing to care as we pursue this new adventure with reckless abandon.
  • So, last July, 2019, I went in for a third brain surgery with the intention of removing the right hemisphere of my skull and replacing it with a prosthetic. *Unfortunately, when they opened me, they saw some infection and closed me up. NO PROSTHETIC. SO disappointed- So frustrated!!!

After a strong course of antibiotics We scheduled the next surgery 7 months later, February 2020, to implant that prosthetic. My son got married in January. Though I had to wear my helmet at the wedding, I WAS THERE (see pictures). I LIVED AGAIN!!!
We are up-to-date
Thankfully, this last surgery occurred just before the big outbreak of Covid 19.
We’ve lost our house- we’ve lost the car. Times are tough, for sure, but we are very fortunate- grateful that I am cognitively in tact throui all these years of procedures and surgeries. I tutor when I can and Steven is looking for a work at home job to bring in income and be able to stay with me as the love-of-my-life and full time caregiver.
Has anything like this happened to any of you? Do any of you know of financial help for families with hardships such as ours. My prayers for you all are everything you wish for yourselves. For those who have faith and “believe,” may GOD bless everyone- keep us safe, happy, and healthy.

With love & warmth * Jil



Wow - what a story! Your determination and motivation are inspiring x

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I’m saying a prayer for you Jil :slight_smile:

You’ve been through so much and can still write with a positive attitude

Bless you and I wish you the best

Amazing…that is one battle. I’m sure your positivity was challenged at times, but reading your story it clearly shines through! Take Care. John.

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