What Doesn’t Kill You Has To Make You Stronger

by
Josephine Macaluso
Health 40 Comments
May 19, 2012 marks a very special 1st anniversary for Josephine (Jo) Macaluso. It’s one she is happy to be alive and well to talk about and celebrate. Over a year ago, a rare medical condition suddenly turned Jo’s world upside down and we are honored that she was willing to share the details of her deeply personal struggle with us. “I think it is important for people to know they are not alone. The only way for this to happen is to share our experiences. Raising awareness is the key.” Here is her incredible story in her own words.
 

My story begins December 16th, 2010 at 2:45 pm. It was the day after my 41st birthday. I was driving and noticed when I looked to my left, my eyes could not focus and every image I was seeing appeared to be splitting. My assumption was that my prescription eye glasses needed a change. Simple, right? Not by a long shot.

As it turned out, my vision had not changed and the problem persisted. I have been a hospital pharmacist for almost 20 years, so I was very aware that double vision is not caused by anything benign. That’s when I knew I was in deep trouble.


Welcome 2011

My complete medical workup begins. I was scheduled for an MRI on January 6th and panic set in. Not only was I scared about what they were going to find, I have a horrible fear of doctors, needles and blood. I had never had an I.V. in my arm, never been in an ER (except while working) and never had any surgeries. But, I felt so much better having my tests and exams at the hospital I worked at for the last 5 years, St. David’s Medical Center in Austin, TX.

I made it through the MRI with a little sedation, a cloth over my eyes and the help of a caring tech who talked to me throughout the long table time. I finished and was sent home. As soon as I walked in the door, my phone rang. It was the hospital telling me that I needed to come back for a CT scan. I hadn’t even had a chance to cut off my patient I.D. wristband yet. So, back to St. David’s I went. This time after the scan, they wouldn’t let me leave and had me wait in the lobby instead. I paced the whole time. They now needed more MRI images.

At this point, I still had no idea what could be wrong with me. But, you know you have something uncommon when the radiologist has your images opened along with a Google search. The next several weeks involved me seeing lots of doctors and “ologists” in all different specialties, to get an accurate diagnosis and to manage my worsening vision and headaches.

illustration of woman's brainOn February 18th I saw neurosurgeon, Dr. Douglas Fox. He knew exactly what I had… a cavernous malformation, also called an angioma, which is the result of abnormal blood vessels that form raspberry-like clusters in the brain and spinal cord. Cavernous angiomas are estimated to occur in approximately 1 out of every 500-600 people, which is approximately 0.2% of the general population. For at least 20% of those with the illness, cavernous angioma is hereditary and in some of these cases people can have multiple angiomas, some too many to count. If angiomas bleed they can produce seizures, neurological issues, headaches, and hemorrhages.

Dr. Fox was familiar with this condition because he did a residency with one of the top angioma specialists in the country. I thought, “Hallelujah, I finally have a diagnosis.” But, despite having clarity, it was nothing to celebrate. Having a symptomatic (a.k.a. bleeding) angioma was rare, and it was even rarer to have one in the brainstem area… I had both of these conditions, as it turned out. Lucky me!

Let me give you some perspective on what that means… the smallest of intrusions in the brainstem can result in significant, and potentially life-threatening, symptoms. The nerves that transverse the brainstem control basic, involuntary functions such as respiration, gag reflex, heartbeat regulation, body temperature, pain and heat sensation, and hiccupping as well as other voluntary functions including eye movement, swallowing, facial muscle control, walking and speech. In a nutshell, the functionality of almost every critical system in my entire body was being comprised by this angioma that bled.


Wait & See

With all that, my doctor’s approach was to wait and see, simply because there were very few options. The only current treatment is surgical removal of the angioma, which is complex; so complex that only a few neurosurgeons in the world will even attempt brainstem angioma resections. If left alone, I was told that the blood from my angioma should, in theory, reabsorb and my symptoms should lessen. But, the odds of a re-bleed were as high as 30% per year for the rest of my life. Being a poker player, I usually make decisions based on understanding odds and probability. I didn’t like those odds. After each re-bleed the symptoms get progressively worse and the healing takes longer, if it happens at all.

Female eyeAt this point, my vision was so bad that I had to wear the ever-so-attractive eye patch. Trust me, it’s not easy to pull off pirate chic! The angioma was sitting on my 6th cranial nerve that controls the lateral eye movement. As the weeks went by, I was terrified as my range of single vision became nonexistent when using both eyes. My left eye was deviating in towards my nose causing complete double vision. Without the patch it was like looking through a kaleidoscope.

So, I started seeing a wonderful eye muscle specialist, Dr. Melinda Rainey, who recommended Botox injections in my eye muscle. Long before Botox was used to treat wrinkles cosmetically it was used to treat strabismus, also known as crossed eyes. Crossed eyes occur when the muscles on one side of the eye are weaker than those on the other side, causing the eyeball to be pulled towards the stronger muscle. Botox works to relax the overactive muscles in order to bring the eye back into proper alignment. I made a total of three trips to the operating room to get the injection. The Botox was not going to “cure” me, but would allow more time for my 6th cranial nerve, which was damaged by the angioma bleed, to heal. Thank goodness for anesthesia!

In the meantime, my overall health continued to deteriorate. The head pain was intense and I was sleeping long and deep. New symptoms were developing and I had all the signs of a stroke; slurred speech, numbness and partial paralysis on one side, facial drooping, loss of coordination and difficulty swallowing liquids. I also had severe increased sensitivity to sound. It all got so bad that I was barely able to function and had to stop working. I knew my angioma had bled again.


Under The Knife

Still seeking help for what was happening to me, my case was then reviewed by world renowned neurosurgeon Dr. Robert Spetzler at Barrow’s Neurological Institute in Phoenix, AZ. He and his team determined I was a candidate for the brainstem angioma resection surgery. If there was any doubt that I had to proceed with surgery, this new bleed within 3 months of my first one answered that.

May 2011, we have a surgery date set, but I was getting worse as the days approached, and we were advised to get to Phoenix immediately. I was only able to walk a few feet and needed a wheelchair most of the time. I first met Dr. Spetzler two days before surgery. He looked me squarely in the eye (pun intended, as my left eye was covered with the pirate patch) and told me the risks and statistics. While he impressively had performed more brainstem angioma resections than anyone else in the world, his grand total was still only a couple hundred surgeries of this kind because of the complexities and risks. His best hope was that I would come out of surgery the way I went into it. His job was to get the angioma out as safely as possible. I was warned that coma, stroke, paralysis and death were potential consequences. But, I did not have a choice at that point; I was so sick and felt if I survived the surgery, that I would just face whatever followed.

May 19th was my surgery day. I was nervous, but ready to proceed. The surgery lasted many long hours as my family waited anxiously in the waiting room. I awoke in recovery and immediately noticed I was able to move the fingers on my right hand. Pre-surgery, I was unable to even sign my hospital consent forms.

Jo Macaluso Post SurgeryMy first surgery and hospital admission lasted a total of 48 hours. This was pretty much record time for a brainstem angioma resection. I was prepared mentally for a much longer stay. I didn’t need intravenous pain medications, was eating well (I’m Italian… we can eat through anything) and had stablized neurologically. I had no pain and felt great. I really did. I was back at the hotel for a few days to rest before flying home to Austin. Just to make sure I would be OK for the travel day, we did a test run to a local Phoenix casino and I got to play some blackjack for an hour. I was on the mend!

Back in Austin, with my cane, I start my physical therapy at St. David’s Rehab. I was well enough that I did not need to be admitted. Dr. Thomas Hill, my post-surgical neurologist, set me up with physical therapist, Natasha Johnson. Despite feeling much better overall, I had some balance issues, coordination problems and my vision was very impaired. I spent many hours with her as well as on my own getting stronger. My home still has charts and visual exercises posted everywhere. I try to spend an hour a day doing eye exercises. Natasha sends me reminder texts to make sure I am doing my eye work. She has been incredible in my healing process. I can’t stress enough how supportive all my co-workers and the staff at St. David’s are to me.

At my 6 month post-op mark, I got a good MRI report. “Things could not look any better.” I got a pat on my back and was told to get on with life. It was a strange feeling when I left the neurosurgeon’s office.

Despite that good news, I soon realized that my body was not quite done causing me issues just yet. In November 2011, only 6 months after my brain surgery, I wound up having another surgery… this time to remove a suspicious nodule that was found on my thyroid during one of my neurological workups earlier in the year. So, I get though that and then just over a month later, I end up in the ER on December 31st, the last day of my hellish year, with a new onset cardiac arrhythmia (I had a sudden, unprovoked heart rate of over 200 beats per minute). As I was being rushed to the “crash room”, all I could think was that I was NOT going to die now after surviving all I did this past year. I survived (again) and triumphantly shouted, “Goodbye 2011!”


Moving Forward & Giving Back

The great news is that my vision has improved tremendously and as the weeks and months continue to go by, I have gotten a larger field of single, focused vision. Today, I am almost starting to feel like my pre-December 16, 2010 self again, which is incredible. But, I am also very aware that I will never be quite the same again. I have good days, many great, but I also struggle with some bad days. Folks with brain angiomas often liken the condition to an “invisible” disability. We live with chronic issues as a result of either having the surgery or having periodic bleeds. While we may look fabulous to others, many of us suffer residual problems that not everyone can see. We just know we are different physically, mentally, emotionally… guess that makes us special in some way.

I know the odds of my angioma coming back are very slim, but my fear will probably never go away. When that fears starts to creep up on me, I draw strength from a line in the Melissa Etheridge song I Run For Life that really resonates for me, “It’s a blur since they told me about it, how the darkness had taken its toll. And they cut into my skin and they cut into my body, but they will never get a piece of my soul.”

Angioma Alliance LogoI am proud to say that in January 2012 I was elected as a Board Member of the Angioma Alliance, a wonderful support group I joined when I was first diagnosed. Diana George, an Angioma Alliance peer supporter who happened to live in Austin, contacted me when I joined. She came to my house several times and held my hand and let me vent my frustrations. She and the entire group have been a continued source of strength and information for me.

Now, it’s finally my turn to give back to others affected and spread the word about the Angioma Alliance, whose mission is to raise awareness and to find a cure. It is a non-profit organization created by people and families affected by this rare disease. Donations for research are always welcome and you can learn more at AngiomaAlliance.org.

I am grateful each and every day for all my blessings. I am also so thankful to my family and loved ones, co-workers and friends who stood by my side, prayed for me and continue to be there during my long road to recovery.


Women You Should Know would like to thank Josephine for allowing us to tell her story with the hope that it brings some much needed attention to this medical condition and the good work of the Angioma Alliance.
 
  • Gargouille

    What a terrifying, drawn out ordeal. Talk about one chapter closing and a new one opening… Doesn’t get more life-altering than a brain tinker. Happy anniversary to the new vibrant, grateful, activist you!!! Thanks for sharing your story.

  • Alice

    This is truly a harrowing story. I am so sorry for Josephine having to deal with this, but her positive attitude and strength will certainly serve as an inspiration for anyone dealing with health issues themselves or with those we love. Wishing “Jo” continued health.

  • Cristina

    That’s my sister!!! It was a crazy year but look how far you’ve come!!! You are a warrior!!! Love you tons!!!

    • EPPIE JULIANO

      JOSEPHINE I’M SO GLAD YOU SHARED YOUR STORY. ALTHOUGH WE HAVE NEVER MET I’VE HEARD YOUR NAME MANY TIMES BY WAY OF YOUR PARENTS’S WE ONLY
      MET WHEN YOUR DAD STARTED WRITING HIS BOOKS(COMPUTER ONLY). I FEEL LIKE I KNOW YOU AND THEM PERSONALLY. HE’S KEPT ME INFORMED OF ALL FAMILY EVENTS!
      I’M DEEPLY IMPRESSED BY THE COURAGE YOU HAVE SHOWN, AND I KNOW IT WILL BE A GUIDE FOR OTHERS WITH THE SAME PROBLEM.
      I KNOW OUR HEAVENLY FATHER AND YOUR PARENTS HAVE BEEN THE WIND BEHIND YOUR SAIL!

      AMORE E BACCI
      GOD BLESS YOU
      EPPIE JULIANO

  • Dolores and Mario Macaluso

    Jo-Jo,
    You are our living miracle girl. Tomorrow is May 19, the anniversary of your operation, and we give thanks to God and the Holy Virgin Mary for saving your life through the great skill of Dr. Spetzler and his medical team. We also give thanks for family, friends and co-workers who stood by your side with their prayers and support to let you know that you were not alone. We also wish to thank “Women Should Know” that kindly published your story.We are still praying for your full recovery. You are blessed. Now be a blessing to others. Let us celebrate and give thanks!We love you Jo-Jo.
    Your Mom and Dad
    Your mom and dad

  • Karen Casey

    Beautiful, brave girl. An amazing story. You are an inspiration. 🙂

  • rachel

    Amazing! I am so honored to know you!

  • Andrea Bowman

    Hi Jo~ You rock! I am a fellow steamie. My 1 year anniversary of the first bleed that I had actual neurological issues is May 22. I had my surgery in Aug of 2012. Reading your story was a lot of what I experienced. Thank you for sharing yours! Andrea :0)

  • Thats my jojo, strong And positive.
    You know you are my Hero!
    You GO girl! Thats is à shirt you gave Me à long time ago.
    You are inspiring for lots of other patients,
    You GO girl!
    Love you jojo!

  • John & Charlotte Cummings

    Jo

    What an inspiring story. We didn’t realize the depth of the problem you had. You really did a great job of telling
    the reporter what you encountered. Charlotte really liked the quote about eating well (I’m Italian… we can eat through anything) Keep up the good work.

  • Michelle Martinez

    It seems like yesterday that all this was happening to you Jo. I am so glad to have you here back at work by the grace of God. You will always be in my prayers and in my heart. Love ya Jo Mac. 🙂

  • Maria

    Jo, we only met once. I am in awe of your courage. You are truly an inspiration to all people dealing with challenging health issues. I can see where you got that courage from, your mom and dad. Best wishes for a healthy life .

  • Renee

    Thank you for sharing this story. It will be helpful to others who read it. And thank you for wanting to give of your time to continue to spread the word to help find a cure. I hope each day you continue to feel stronger. I, like you, look forward to each and every anniversary of my surgery as sort of another “battle” to winning the war. Many blessings to you.

  • Mary and Mike Recio

    Thank you for sharing your whole story. We knew parts of it; but, now I know we really didn’t know everything. We are so glad you are on this side of that ordeal and we appreciate your help as Mike goes through his symptoms of this same condition. We appreciate you and the Angioma Alliance.

    thanks, mlr

  • Lindsey Lieneck

    Jo! I’m so amazed at your miraculous recovery and incredible story! Thank you for sharing it. You certainly are a woman we all should know.

  • Josephine Macaluso Mignardi

    It is amazing what emotions your story tells.. as i read it brought tears to my eyes and tightness to my throat.. I am so glad dear cousin that you are doing well.. luv u

  • Bill

    Jojo – Yours is an AMAZING survivor story!! Shows you how far a positive attitude can take you. Congratulations… Also didn’t hurt to have a Rock Star surgeon!! PS. She’s my sister too (sort of )

  • Margaret

    I can’t believe what you have been thru, and am so relieved that you have fought your way to this point. I hope and pray your strength grows and you feel more yourself every day.

  • Jim George

    One of our favorite people. A true mensch. Jo is a fighter encasing a thousand watt energy source. Diana and I love you, girl.

  • EPPIE JULIANO

    JOSEPHINE.
    WE’VE NEVER MET BUT I HEARD OF YOUR CONDITION THRU YOUR PARENT’S.
    I’VE BEEN FRIENDS WITH THEM VIA CYBERSPACE. I KNOW MANY OF THE FAMILY MEMBERS BY WAY OF YOUR DAD’S BOOKS.
    I’M SO HAPPY YOU SHARED YOUR STORY IN DETAIL. YOUR COURAGE IS A TRAIT I KNOW YOU
    INHERITED FROM YOUR PARENT’S I KNOW THEY’V BEEN THE WIND BEHIND YOUR SAIL.
    YOU STORY WILL BE OF GREAT HELP TO THOSE WHO HAVE THIS CONDITION.

    GOD BLESS YOU
    EPPIE JULIANO

  • Ann Louise

    You are special…..God Bless,wishing you continued health!

  • Maureen d

    Josephine your strength, encouragement and sharing your journey with others will help those of us battling many challenges. God’s love and blessings have touched you. He chose you to advoccate for others and never give up hope………blessings to you.

  • John

    What a story. I’ve known Jo for over 20 years and I prayed for her during this time. Her spirit is a testament to her victory over this illness. God bless you for sharing your story. Your will and courage are enlightening and goes to show anyone to never give up. Way to go Jo!!!!!!

  • Caren Brauner-Galit

    Josephine…your strength and courage over the past year is just amazing!! I am so sorry for all that you have been through…and an so glad to see how well you are doing now. Wishing you continued good health and happiness always…

  • Eileen Marinakis

    I truly believe that God allows special people to face gargantuan problems so that they can learn from their experiences and use that learning for the benefit of others. Jo, you are doing just that. You’re taking your personal experience and channeling your growth and strength to the benefit of others who perhaps are not as informed or well supported. Best of luck and success to you and the other members of the Angioma Alliance in your mission work. You go girl !

  • Benedetto Scannella

    Several of us in NY prayed to the Blessed Mother a prayer called the Memorare on behalf of a succesful operation for Josephine. May is the month to celebrate Mother’s day, and the 13th of May to October 13th are very famous dates in the Blessed Mother’s appearance at Fatima. I myself have no doubt that this was a miracle. On Oct 13 2012 we will be celebrating the 95th anniversary of these apparations. I ask Josephine to pray for our successful event. God bless you, Benedetto.

  • Mirella Sanseviero

    Dear Josephine,…
    una persona speciale, un grande miracolo, ringraziamo Dio!
    Best wishes, God bless you,
    Mirella & Vincenzo Sanseviero

  • lea brunetti

    What a moving and inspiring account, Jo. As your father’s daughter, you display many of the wonderful qualities he possesses. Best wishes for continued good health and humanitarian work.

    Lea Brunetti
    (a friend of your dad’s).

  • Anne

    Jo, This is a long overdue note because I have been away and have not read Women You Shoud Know in a week or so. Your story is incredible. You have been through more in one year than most people go through in a lifetime. I know that you will be able to help other victims of this disease by sharing your story and your courage. God Bless You and keep you well.

  • Denise Peralta

    Love you Jo’ The Big, I’m glad to hear of your improvements, keep going, God bless you.

  • Gina

    I am glad you shared your story. You have such courage!
    May God bless you always!
    Gina

  • Stephanie & Mark Silberman

    Josephine – We live across the street from your Mom and Dad who, as you know, could possibly be 2 of the most wonderful people on Earth. Steph and I were continually able to get updates from them on your condition. We are so glad to hear about your ongoing recovery. By giving back to others you are an inspiration. Thank you for sharing your story. In this house we love the stories with happy endings!

  • Natasha Johnson

    My dearest Jo,

    I have been so blessed to have you as a patient!!! Your recovery has been amazing!!! Thank you for sharing your story and inspiring others. You are awesome! I guess I will forgive you for not telling me about the article 🙂 (I won’t beat you up too badly when I see you next time) 🙂 All joking aside, I am grateful that God has seen you through these trials and “storms,” I pray He continues to watch over you and bless you now and always.

    Natasha

  • Bill & Christine Brown and Family

    Dear Josephine,

    We’ve become acquainted with your dad through his books for the last few years and, thus, have gotten to know some things about his family, and we’re thankful to God for the opportunity. Many, above, have already stated so many truths that much of what I’d say would be redundant. Yours is an excellent article that will be of benefit to so many. God tells Christians to consider it joy when we encounter various trials, “knowing that the testing of your faith produces patience(endurance)….and let endurance have her perfect work(result), so that you may be perfect and complete, lacking in nothing(James 1:2-4)”. I love your kind spirit through it all. Thank God for His goodness and mercy, and may He continue to bless you and yours always.

    With our love to you & your family,
    Christine

  • Jocelyn

    Amazing story, and I am so happy that you survived such a risky surgery and still are so positive! You truly are an inspiration! Thanks for sharing!

  • Our stories are very similar – I felt the same as you about the choice to have surgery. The symptoms had gotten to a point where it wasn’t really really a choice. Just do it and hope for the best. It appears that you made the right choice (I wanna think that I did too). Keep fighting the good fight!

    Jarrett Wilson
    (jarrettwilsontbi.wordpress.com)

  • Nikki

    What you said about the invisible disability really struck cord. I have been feeling like that since my most recent bleed and 5 stroke last year. You story is very positive and inspiring. X

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