“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars” – Khalil Gibran
A puff of smoke?
No, this isn’t a smoking kills article. I hope in 2019 we have acknowledged that already and I don’t need to go into all that. A puff of smoke is the English translation of Moyamoya from Japanese. It’s a rare neurological condition. It’s most common in East Asia. Although there seems to be a genetic trait to the disease, it still has not been proven. It’s also possible that head trauma can cause Moyamoya as well. Risk factors are being female, having family members with disease, being down syndrome, having sick cell anemia disease, being of Asian descent and being young.
A puff of smoke is used to describe how blood vessels within a carotid artery appear when viewing the brain. When these vessels cluster together they block crucial blood supply and oxygen to the brain. The vessel clusters can cause an aneurysm or stroke. Patients can have seizures, mini strokes, developmental delays, severe headaches, numbness to limbs on one side of the body and face, difficulty understanding language and processing information. As you can imagine this disease is very rare and the complications and symptoms are so extreme. Now imagine yourself 16 years old with your whole life ahead of you and without warning having your first mini stroke! That was just the beginning of a long journey for Brigida. Before I share her story I have key medical terms I’ll share with you so you don’t get lost along the way.
Key words and terms to remember along the way.
- neuro– relating to the brain
- angiogram- a medical procedure used to view inside arteries and veins ( normally in the heart chambers but not always)
- angioplasty – a minimally invasive procedure to widen narrow or obstructed arteries or veins
- the left side of the brain- controls the right side of the body
- the right side of the brain- controls the left side of the body
- TIA– transient ischemic attack also known as mini stroke the damage is normally shown on a CAT scan
- CVA- cerebrovascular accident also know as a stroke
- fistula– arteriovenious fistula an abnormal connection between and artery and a vein
- femoral artery– the artery running along inside of your inner thigh/ groin.
If you met Brigida today, your first impression would be her smile. She is very beautiful and her smile radiates. She is very out going and has a pleasant attitude. She is care free and when asked about her medical condition she doesn’t speak of it in pain like most people would. She is a mother of three, a Zumba instructor and she sells Herbalife nutrional supplements and Monat hair products. Most importantly, she loves life.
If anyone has a reason to be depressed about life she does. If anyone has a reason to be thankful about life, you will after reading her story. I think you’ll come up with a few reasons, trust me. There is a saying that people create their own pain. That pain isn’t a physical pain, rather the perspective you choose to live in. Brigida could describe herself as stroke victim, disabled, moyamoya diseased, scarred, depressed, incapable, instead she is a warrior, empowered, and strong woman capable of handling the crazy health conditions life has thrown at her over the years.
The Teenage Years.
Brigida was a normal teenage girl. She was pretty healthy and played sports in high school. Brigida had high blood pressure but her doctor assumed it was hereditary as her father had high blood pressure so it wasn’t too much of a concern. Brigida began having heart palpitations in class and having to go to the school nurse when she was 16, almost 17 years old. Several times she had gone to the hospital but nothing came of it. At 17 years old Brigida was at home with her mother and her whole right side of her body became numb. Her mom called 911 and she was rushed to the hospital via ambulance. At the hospital doctors explained to Brigida’s mother that she had a TIA (ministroke). Unfortunately correct patient teaching was not completed and Brigida’s mother did not leave the hospital with a full understanding of what that really meant for Brigida’s health in the future. Brigida did have a full cardiac work up following her hospital stay. She had a holter monitor hooked up, which is when a continuous EKG is on your heart to check for palpitations or abnormalities with daily activities over several days time, she also had an ultrasound of her heart (echocardiogram) and was told everything looked great! Perfect! Brigida continued to live life as if nothing ever happened.
One day everything changed.
It was November 2007. By this time in life Brigida was pretty busy. At 22 years old She was already married and a new mother. She had a job and was working towards her career as a Liscensed practical nurse. Attending nursing school alone is hard, being a new mother and trying to study is madness.
One day Brigida was at work, she noticed something strange she was slurring her words and wasn’t able to say her own name! Thinking that was strange. She continued her work day. Following her work day she goes to nursing school. While at school her fingers go numb.Brigida had been studying strokes in school recently and these symptoms began to concern her. She now recalled what happened to her when she was a teenage and went to her Dean of the school and told her ” I think I am having a stroke. The Dean challenged Brigida and assumed she was trying to skip school. The Dean told her if she didn’t want to be at school she shouldn’t come. Brigida assured her she wanted to be at school. The Dean said ” sit down I’ll take your blood pressure, and it was 150/200! It’s even more dangerous when the bottom number is higher than the top. Brigida made arrangements with her husband for their son to be taken care of and set off for the hospital.
Brigida was in the hospital for two months. Brigida was taken off her oral contraceptives and her standing blood pressure medications while in the hospital. The right side of her face was paralyzed from the stroke causing a facial droop. Her right arm was partially paralyzed. Her treatment during her hospital stay consisted of controlling her blood pressure. Physical therapy and Speech therapy. Brigida’s language returned to her within 3 to 4 days of her stroke. Brigida is a bi-lingual speaker. Her first language is Spanish and her second language is English. She speaks both languages fluently. Brigida is often severely anemic on top of her blood pressure problems. Her anemia is often monitored as well.
Her blood was tested during her hospital stay and she was told she had Hepatitis C. Brigida was told about agressive treatment options similar to chemotherapy. She would lose all her hair and possibly her life in the treatment process with this new drug. She under went more testing to prove she had Hepatitis C. Thankfully she did not. Three blood tests came back negative confirming there was a misdiagnosis by the hospital for Brigida having Hepatitis C. In the midst of everything she was dealing with, Brigida was thankful she did not have to under go any therapy or treatments and that the misdiagnosis was caught.
Brigida wanted an answer to why she had a stroke in the first place. She was so young and relavitely healthy woman aside from high blood pressure. She did not receive a diagnosis from the hospital during her time there or clear reasons on why she had a stroke. Her case was considered very special and she was referred to St. Luke’s Roosevelt Hospital in NYC to a team of doctors lead by a Dr. Barenstein. She had her first consultation in New York and scheduled some testing. She was told to return if she had any problems in the mean time. Of course she did, in April 2008 Brigida had another TIA. This time she received lots of tests from the team of doctors in NYC. These doctors told Brigida she had brought Moyamoya to New Jersey, that is how rare this disease is. They fully educated her one her rare condition and suggested she have a stent placed in her left Carotid artery to provide adequate blood flow and oxygen to her brain. Brigida agreed to having the proceedure done. Her alternative was to continue to have strokes and possibly die. Or have surgery and possibly have a stroke on the table and die. Her options didn’t seem very appealing. Only one option had a more positive outcome for her future. Brigida’s family was very concerned. Brain surgery is a very big deal! We all know the saying to denote anything that doesn’t seem impossible ” it isn’t brain surgery” well this was. I asked Brigida some questions about how she felt in those moments going into surgery.
Me: What were your thought’s exactly?
Brigida:” I’m going back to work, I’m getting up and out of this”.
Me: What did you think about your son?
Brigida: “At that time, I felt like I needed to get back to him, I felt that made me stay positive, his dad was a big help,his family and our baby sitter at the time.”
Brigida mentions her family was consistently at her bedside during this time in the hospital.
Wow that is a great perspective on brain surgery. I would have been losing my mind. Brigida had been in the hospital for a while. She was one of the youngest people who this surgery has been done on. They went in and placed the stent into her carotid artery through her femoral artery. Remember our little site key? When Brigida woke from her brain surgery she opened her eyes to a team of doctors clapping and cheering for her. Amazing! Also a little scary. Brigida was doing so well she was allowed to go home just two day after the stent was placed. She was given a cane and instructed to not walk up and down the stairs too much and not to lift anything over 10 lbs. Although she recovered well from this surgery it was not the end of brain surgeries for Brigida.
The stent closed.
2008 held more ups and downs for Brigida. Nearing the close of that year Brigida had another TIA. An angiogram procedure was completed at the hospital and a decision was made to do an angioplasty. With much remorse Brigida’s physicians informed her that the artery was starting to close the stent. Brigida was told this was ” never seen before”. The stent surgery was ineffective. The angioplasty was completed and worked well for some time. Life continued. In 2009 Brigida was getting dressed and her left arm became paralyzed a first for symptoms on her left side, you know what this means? Remember what I told you about the brain? Her right brain is now being affected! Another TIA in the books for Brigida but this time affecting the opposite side of her brain. The side that had been fine. An angiogram was completed during this hospital stay. A mistake was made during the angiogram. unknown to Brigida once discharge she started to have a lot of pain in her groin. Severe pain. If Brigida was complaining about pain it had to be bad. She had an infection at the angiogram site as well as a fistula had formed from the technician accidentally puncturing her vein and artery creating a blood clot. This infection progressed to yet another hospital stay for a special wound treatment called a wound vac. A wound vac works with negative pressure and is attached to a wound to draw out excess fluid.
Once discharged for that ordeal. Brigida still needed to see her specialist. Brigida went to her specialist team in NYC they completed their own angiogram in the opposite leg of course and an MRI which revealed the Carotid on her right side also had Moyamoya she was told it can spread.
Brigida was informed that there was a high risk of placing a stent this time. The last stent did not work and was closed, the team suggested Brigida have a by pass surgery done. This was in June 2009. Brigida really didn’t consider this to be a big deal. Her thoughts were, they’ll go in fix what’s wrong and done. ” I didn’t want to make it a big deal in my head, if I did then I was going to freak out”. Brigida thought it over. Schedules were made. Brigida recalls her father even made a burial plot arrangement for her. She was laughing when she told me about it, she said some of the family wasn’t really as hopeful as she was about how the surgery would go. Brigida was told so many scary things about what could go wrong. She could “die on the table, stroke again, be a vegetable, etc.” One thing that bothered Brigida the most was having to shave her head. She loved her hair.
The doctor’s promised Brigida they would only shave the areas they needed to. I asked Brigida why it bothered her so much that she needed to cut her hair? Everything else was so extreme.
Brigida : ” What makes a woman beautiful is your hair, that is how I grew up my beauty was in my hair. Everyone used to compliment me on my hair when I was little”.
That makes perfect sense. I understand that completely, it makes me think of Breast cancer survivors it’s not always what the disease process entails but it’s also the feminine power that it can strip you of in its wake. . I think we can all relate to her thoughts. Brigida goes on to say that while the physical recovery was about 1.5 months. This surgery was more mentally challenging for her then when she had her first surgery.
As you can see so far Brigida’s life hasn’t been all cupcakes, unicorns and butterflies. She does have a positive mindset. When asked about her thoughts before going into brain surgery it wasn’t I’m going to die! I am pretty sure if it was. She would have died. That seems like an extreme statement on my part. Mindset is everything. We live inside our minds at every single moment we are alive. We don’t have a promised amount of days in life. If we spend our moments waiting for the next best thing. Our life may never happen. Take my Grandmother for an example she died of cancer at 65 years old. She struggled so much and I am sure I don’t know half the pain she went through but she was a pessimist. She saw life through worse case scenario all the way down to the weather forecast. It still bothers me she died at 65, that’s really young. Too young. Perhaps if she saw things in a more positive light she would have just enjoyed the days she lived more even if she never lived anymore days over 65. Do you catch what I am saying? Increase your life by moments, you really have no control over the days or what happens rather your reactions to those events. You can make your life easier.
Brigida’s story will be continued in next week’s blog.
More Medical information on Moyamoya
Follow Brigida! on instagram @brizumba3
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This is a true story of Brigida’s personal life she chose to share with me, there was no exchange of funds between her or myself. This is for the sole purpose of uplifting others.