Hey guys! Wow, okay, tears were running down my face while writing this whole post. But, I wanted to share my story with you for you to get to know me better and in hopes of reaching out to those suffering from illnesses of any kind, and unable to find an answer or a cure. My situation has been fairly unique to say the least, but I wanted to share so those still suffering do not lose hope, and find a cure for themselves before it is too late. If I have learned anything through this whole experience, it is to fight for yourself and never give up on your health. It is not your fault. NEVER blame yourself. You deserve to be well. And remember – your body is always working FOR YOU, never against. Finding the right doctors and support system is the biggest, sometimes toughest challenge.
This all started 4 ½ years ago, in January of 2014, I was single and living in New York City. I was living a very active and busy lifestyle, working over 40 hours a week in the Fashion industry, working out daily, and trying to maintain a healthy social and dating life. In February of that year, I got a stomach bug and woke up in the middle of the night and passed out because the stomach pain was so severe. This was not the first time I’d ever passed out, so I did not go to the doctor, and quite honestly did not think much of it. However, a few days went by and my stomach was still not well so I went to my doctor and she prescribed me Cipro (antibiotic) and said that should clear it up. And it did….
Over the following months, I still wasn’t feeling like myself. I would get dizzy spells, and would fatigue much more easily. I started having muscle aches and a constant, nagging pain throughout my body. At times, I could even feel my legs going numb during my workouts and I would have to stop. It all seemed very strange and scary. This had never happened to me before, and I have always led an active life. I knew there was something wrong in my body.
In May, I had finally had enough, and decided I need to speak with a doctor to further investigate this. The doctor performed a bunch of tests, blood work, and decided I was probably just fighting off a virus that was still working its way out of my body. She prescribed me rest… She also explained that vertigo could also be the cause of my dizziness and fatigue, and that vertigo could even cause neuropathy if my nerves had been affected by the virus. At the time, I accepted that was what was going on and that in time I would heal. I was still trying to wrap my head around the fact that all this what happening to my body. It didn’t feel real.
While all of this was going on, I wound up meeting my now husband, Clark, and I was on cloud nine. I knew the moment I met him out in the Hamptons that we’d marry each other one day. We began dating right away, and I was noticing that I just couldn’t keep up like I used to. I kept thinking I was just giving myself anxiety, and that maybe my lifestyle was just too busy, and I wasn’t allowing myself enough rest. So much was going through my mind at the time, but I knew I had been to the doctor, and that she had told me I was OK. So, I figured I had to be okay, and it would all eventually go away. I kept thinking the next day I would wake up and feel normal again.
I kept fighting and being strong through it all, but at times couldn’t help but break down. Close friends and family often thought I was giving myself panic attacks and putting too much stress on my body, not allowing it to heal. But, I know my body. I know myself. And, something else was going on. I just had no way to figure out exactly what that was. I was feeling so hopeless.
In October of that year, I flew to Paris to visit my cousin. Paris is my favorite city in the world, and I was so excited for the adventure. During the trip, though, I found myself sleeping 12-14 hours each night, and having no energy or motivation to get through the days. Yes, of course travel is tiring, but I had traveled over seas often before and this time was different. I knew at this point, I needed to seek out further treatment when I got home. My symptoms were worsening and I wasn’t feeling myself.
When I got home from my trip, I made an appointment to see a neurologist. At my first appointment, the Neurologist did an exam as well as multiple tests including an EEG, EMG, VNG, TCD, MRI (without contrast), and blood work. Following these tests, the doctor reported that everything came back “fine,” except she noted that I had nerve damage in my legs (neuropathy) and, due to my symptoms I’d previously expressed, she diagnosed me with Lyme Disease even though my blood test for lyme came back negative. She explained there are often false negatives and the testing is not accurate. She was diagnosing me off of just my symptoms.
She said the treatment would be to start taking antibiotics for at least two months. I also had an abnormal EEG, and she wanted to do a 48-hour EEG for further testing. She expressed that Lyme Disease can attack your neurological system, and also effect EEG testing. So, I had the 48-hour EEG test completed and everything came back clear. At this point, I was utterly confused because I had extensive blood work done for Lyme and it had all come back negative. Having learned that Lyme is sometimes difficult to diagnose, I began researching more and more. But, I wasn’t ready to begin the two-month antibiotic treatment she had suggested. I was also terrified that I had nerve damage; how did that happen? I am very active; how could I have nerve damage? Would it ever come back? Did I do this to myself? I was upset and scared. Also, why have I never noticed a bug bite, or a fever, or flu-like symptoms? So many thoughts swarmed my mind.
After her “diagnosis”, I knew in my gut there was something else going on. I wasn’t ready to call it Lyme Disease and take antibiotics for two months (which she mentioned might not even work and may make me feel very horrible). I continued to seek out new doctors to help discover this mystery illness I was experiencing. I went to an Infectious Disease doctor as well as a rheumatologist. The Infectious Disease doctor ordered a Spinal Tap (ouch!), which came back completely fine. That also made me believe it was not neurological Lyme—otherwise I believe something would have shown up in my lab work. (If anyone has history with this – let me know your thoughts!). The Rheumatologist diagnosed me with Fibromyalgia (seemed like BS to me at the time) and wanted me to start taking some medication to control the pain. I also was not thinking this is what was going on. What causes fibromyalgia anyway? I wanted to know what was causing my nerve pain. I did not want to mask it. Fibromyalgia is REAL, however it is a symptom of something larger. I believe I did have fibromyalgia, but I wanted to know WHY – what is causing this!
I am very self-aware and in-tune with my body and none of these diagnoses were making sense to me. I did not feel they were correct in finding the root cause of this all, and I was not going to settle. I was beginning to feel like I was just another number. Every doctor was giving me their educated guess and using me as a trial for a new medication that may work. I wasn’t willing to poison my body with unnecessary medications when we had no idea what was at the root of what was going on. I was not getting better and I am not someone to take a pill just to mask symptoms. I am young, and I have a long life ahead of me. I wanted to know what was going on and how to cure it or control it, not mask symptoms without knowing the cause. Side note – during this all I never took any medication. I intuitively knew it was not what my body needed. I knew, in my gut, there was a problem that a medication was not going to fix.
At this point, it was Spring 2015 and I still wasn’t feeling well, and still…no (correct) diagnosis. It had been a very emotional year, being in a new relationship, being away from family (who live in Michigan), and trying to hold on to my job to pay my New York City rent and endless medical bills. I was beyond exhausted, not only from being ill, but also from the stresses of life. I was trying to keep as calm, but that’s a difficult enough task when things are normal, let alone when experiencing health concerns. I continued to work out when I could, especially gentle yoga. I tried acupuncture and massage therapy, and I was going to PT to try to control my vertigo symptoms. I tried changing my diet to a fully natural diet with no processed foods, no gluten, and no dairy. Of course all these things helped and I still practice them today, but they were not the cure. We still did not know what was going on in my body and my symptoms still persisted.
So, I knew it was time to seek out a new neurologist and get a second opinion. The demand to get into a highly recommended doctor is high in NYC and I was low on the totem pole. (which is another issue) However, I went to NYU and found another doctor. I was very comfortable with her. She seemed genuinely interested in my case and was determined to figure out what was wrong, versus just giving me a pill or antibiotic to see if it worked like my prior experiences. I was feeling hopeful. She did another MRI, but only on my spine this time, as well as more blood work and a repeat of the EMG (nerve testing). The blood work and MRI came back fine. However, the EMG ALSO came back completely fine, which is not what the test from the prior neurologist showed. The most recent test indicated I did NOT have neuropathy… I did not have nerve damage. Now I was thinking, did I ever? This was all so confusing to me. The new neurologist believed that I never had it and the reports from the previous test were wrong. Perhaps they had someone who wasn’t qualified doing the previous exam. I was so relieved to know that I did not have nerve damage! I felt confident she was correct in this finding. However, still what was wrong!? My legs were still going numb and I was feeling all sorts of odd symptoms. The mystery persisted… She could not find anything wrong, and mentioned that perhaps it was something autoimmune related, and sent me to another rheumatologist- even though all my blood work from my immune markers came back within range. She also suggested I see a hematologist because my WBC had been up and down the past year. After seeing both doctors, and more tests, I was told again I was fine, and that I probably have Fibromyalgia – Ok, I know this – but maybe I had some sort of auto immune disease going on – Yet, still, NO ONE could tell me what. It was all a guessing game, meanwhile I am feeling beyond exhausted everyday try to keep strong. I am sick and no one could help me. I felt so helpless and alone in this journey.
At this point I didn’t know where to go next. No one could give me the answers I needed. I had to do some more researching. I started to focus more on my vertigo symptoms since that was the most debilitating- I could barley walk around the city and was going broke from all my uber rides. And even though I had been to an ENT before, I was interested in a second opinion. I just had a feeling it just took ONE doctor to figure out what was going on. I found an ENT at NYU with great credentials but of course with great credentials came a long wait. I was willing to wait. At this point I felt like I was pulling at straws. I was SO desperate to get well and move on with my life. I didn’t move to New York City to sit in my apartment and rest all day.
In June 2016, I went to see the ENT. He did multiple tests on my ears and wanted to order another MRI WITH contrast. At that time, I had no idea there was a difference with MRIs. Within a few days, the ENT called me back and said the MRI showed I have a Cavernoma Malformation in my frontal lobe, and I needed to see a Neurosurgeon right away. He also suggested that I might have an inner ear concussion from when I passed out the prior year and hit my head (I had 50% hearing loss in my right ear). However, the cavernoma was on the left side. It was all so very over whelming. I felt like it was a year-long scavenger hunt trying to piece together all of the pieces to develop a clear picture of what was going on inside my body.
At the time I got the news about the cavernoma malformation, I was home in Michigan on vacation, so I scheduled an appointment with the neurosurgeon for as soon as I got back into town. The doctor gave me little information via phone on the cavernoma, so I was “Googling” (worst and best thing I’ve done) and trying to figure out what it meant. After reading, it looked like a cavernoma is clusters of abnormal blood vessels mainly found in the brain and spinal cord. They are sometimes known as cavernous angiomas, cavernous hemangiomas, or cerebral cavernous malformations. They are a rare thing to have and most of the time they form at birth. Also, most of the time, people have these and they never have any health issues, so is this what is going on or not? Immediately I thought, why was this not caught in the first MRI? Was it because that MRI was without contrast and this one was with? I had so many emotions and questions still left unanswered. I just had to wait. I later found out, yes – I needed an MRI WITH contrast to find this in my brain.
The next week I was back in New York City and Clark and I went to meet with my neurosurgeon. He explained to us what a Cavermona was, and also explained that mine had previously bled a few times, but that it had since clotted. This was not a good sign. But, the doctor was confident I would not have to have a craniotomy (brain surgery) unless the cavernoma grew too large or if it were to hemorrhage. He assured us, the chance of this happening was very low. He suggested yearly MRIs to keep an eye on the growth of it. Also, if I had any symptoms of a seizure, loss of body movement, headaches, etc. that I should come back to have it checked out. I asked him about my other symptoms, and whether or not they were related. He would not say yes or no, but said they probably were not. AH! So I left thinking I had a time bomb in my head and it was not related to what was going on in my body.
I left the appointment in fear, but also relieved that maybe this would correct itself overtime and I would be OK. I wasn’t sure how to feel. However, I was almost happy that we’d found something. I had been waiting sooooo long for an answer. But was this all related? I had no idea! And either did the doctor.
Back in May, I had gone on leave with my work under FMLA in order to take care of myself and find out what was wrong. It was now August and I had to return to work or else I would lose my job. I could not afford to lose my job. I had rent and the medical bills were piling up. I wanted to feel normal again. I wanted to get back to work, get back to working out, and have that social life that I had lost over the past year. As exhausting as it was to think about, I was looking forward to returning to work and finding some normalcy in my life again. I was happy we figured out that there is something going on and I wasn’t making it all up, and thought it could only go up from there.
On my first day back to work, August 3, 2015, I got a terrible headache. Immediately, I thought it was from looking at the computer screen all day, the stress of work that I wasn’t used to, and the overall experience of returning to work in a stressful environment. I took some Tylenol (first time I took this – but I could not go home and rest) and got on with my day.
Over the next couple of days, the headache would come and go. After a week, I began to panic and went to my internist to see what was going on. She was aware of my cavernoma and did not think it was that. After all, I just had it checked out and it would not have grown in that short amount of time. She also mentioned if I had hemorrhaged I would have worse symptoms. Perhaps I have a high pain tolerance, or I wasn’t describing the severity enough….. She prescribed me migraine medication and told me to call her if I was not better. At this point, I took the migraine medication. I broke down. I felt broken – physically, emotionally, spiritually. I needed something (anything) to help in any way.
At this point, it was the weekend, Clark was out of town, and I was trying to just rest and keep calm (easier said than done). Alone – in the city with a massive headache. Now, anyone who struggles with anxiety can relate that when you are alone and in pain, everything feels worse. And that is what was exactly happening. I was in the city alone for the weekend, I wasn’t feeling good, I had anxiety about the whole situation so I told myself I am fine and I am making it worse. EVERYONE around me (medical doctors) were telling me I was fine and I was giving myself anxiety. A few doctors wanted me to go on an anti-anxiety medication, which I never did. That was a Band-Aid I didn’t need. I KNEW there is something more.
However, the headache was not getting better with any medication that I finally decided to take, and I knew I had to do something else about it.
I called my internist again and told her it has not gotten better, she told me I needed to go to the ER in hopes they will do a CT Scan. When I got to the ER, it was super busy and hectic. I explained my symptoms and they had my MRI with the findings in my chart. I expressed to them that I had never had a headache like this before, It had been over a week and I would like a CT Scan to make sure nothing was going on with the cavernoma. They assured me, the cavernoma was fine, and that the MRI was so recent that it must have just been a migraine. It was a hot summer in the city so they said I was dehydrated and stressing myself out. (I am getting angry why typing this btw) I was so upset as I felt like they were not listening to me. They started to give me an IV for the migraine medication without even telling me what they were doing and I ended up passing out. Why I passed out, I am unsure. It could have been the exteme anger I was feeling, but too exhausted to express more, or it could have been something even worse!
When I came to from passing out, they said they did not “think” I had a seizure. Honestly, I do not think anyone saw what happened. I was in a corner of the ER with not much attention on me. The ER doc assured me that my body was stressed out and I just needed rest and that I would be fine. They wanted to release me to go home on medication and rest. I was so tired and confused. All I wanted was my bed and rest, so I complied, and returned home. I felt like I was in a dream where I was screaming but nothing was coming out – that is exactly how I felt. No matter what I said, they were not listening to me. I felt hopeless, yet again.
I went to the ER on a Friday afternoon, so I went home and rested over the weekend, but I still was not better. I slept a lot. I would have moments were it was intense pain and moments were it was more dull. I called my doctor to tell her what had happened. She ordered me a CT scan and told me to go as soon as I could get an appointment. (They are open Mon-Fri). At this point, I was on thin ice with my work. I returned to work 2 weeks ago and had already missed two days due to not feeling well. I made the decision with my family’s support that I needed to quit my job and take care of myself. I went into work on Monday to give my resignation and let them know I that I would not be returning after that day. I scheduled to have the CT scan done on Tuesday afternoon (soonest available).
The headache was always present, but like I said the severity would come and go. Sometimes it would feel terrible and debilitating, and other times I felt like it was going away. I was scared, confused, and wasn’t sure what to do about it. I mean, the medical professional at the ER told me I was fine, so maybe I was being dramatic? Maybe I was bringing this all on myself, stressing my body out? Work stressed me out, maybe after quitting I will feel better?
Being the active and determined person that I am, the day after I quit my job, I had a CT scan at 2 PM. I had somewhat of an endorphin surge from quitting my job and leaving that stress behind me for good. So, I KNOW this sounds CRAZY. But I was just CRAVING to have my normal life back and I decided to go to Soul Cycle before my CT scan. I was beginning to think I was NUTS for thinking something is wrong with me. Mostly because everyone was telling me I was nuts and there is nothing wrong. While I was in class, I felt my body crashing. I knew I made the right decision to get the scan done and the wrong decision to go to Soul Cycle. I had a feeling something was very wrong, but also didn’t want to believe it. I just kept pushing through as much as I could. I wanted to feel normal.
I left class and fell asleep in the cab on the way to my CT scan. I was there alone, as I was doing this to “make sure it is nothing serious.” I had the scan done, and they told me to wait in the waiting room for the results. Never before had I gotten same-day results from a scan, so I knew something had to be wrong. Looking back, there were a few moments where I just knew something was seriously wrong but had no clue what action to take. I was almost angry with myself that I had not acted more drastically sooner, but I was so overwhelmed I was not thinking correctly and I had so many medical doctors telling me I am fine so I was confused! After the scan, the tech came out and told me that my doctor was on the phone and that I needed to come speak with her. I answered the phone and she let me know the scan showed that my cavernoma had hemorrhaged very large, and that I needed to go to emergency right away. I was honestly not surprised, and I was oddly calm and somewhat relieved (I know that sounds even more insane – but true). I got a copy of the CT scan and got in a cab to the hospital. They wanted to call me an ambulance, but the thought of that made me anxious.
When I got to the hospital, I told the front desk my situation and my neurosurgeon’s name. Within an hour, I met with my Neurosurgeon in the ER room and he let me know that after reviewing my scan, I will need brain surgery in order to remove the blood clot and cavernoma to survive. The hemorrhage was putting so much pressure on my brain, he was shocked I was able to speak correctly and had no other symptoms besides the headache. He mentioned I would have craniotomy the next day. A craniotomy is the surgical removal of part of the bone from the skull to access the brain and then specialized tools are used to remove the section of bone called the bone flap. The bone flap is temporarily removed, then replaced after the brain surgery has been performed. He went over the risks, but there was no other choice for me. If I did not have surgery, I would not survive.
My family rushed to New York City to be by my side along with Clark who had been my rock through this all, and surgery came the next day. On August 20, 2015, I had brain surgery—something I would have never imagined happening. I was of course very scared, but there was a sense of relief that I did not have to be in pain anymore. I had a gut feeling this is what had been causing my symptoms all along. I think the slow bleed was triggering a lot of issues I was dealing with. I was beyond thankful we had found out what had been going on in my body. I was beyond thankful that it was fixable! Though I was nervous about going into surgery, I just kept counting my blessings and being so grateful to be alive.
My Neurosurgeon and the doctors at NYU were amazing and made the very scary experience tolerable.
Surgery went very well, thank goodness. It was a 5 hour surgery and I was asleep during it. (Some brain surgeries they keep you awake). After surgery, I was taken to ICU where I was closely monitored. Then, five days later, I was free to leave to go home and heal.
My family stayed with me in New York City for over a month after my surgery to help take care of me. Clark never left my side in the hospital and through this whole experience which I am forever lucky and grateful for,l but he had to return to work after my surgery so I needed help and support during the day to help me shuffle around my 700 sq. apartment (lol). I really was helpless though. I could barely walk the first few weeks, let alone do anything else. I needed everyone’s help and I was thankful to have family and friends by my side. It was a real turning point in realizing who is there for you when things go wrong.
I was sad to acknowledge this, but I knew after surgery that it was time to move home to Michigan to be near my family and friends. I needed the help and support to recover and a much calmer environment to heal. Clark also made the decision to also move back to Michigan. I did not even though he ever questioned it.
I am now living in Michigan, married to Clark as I write this today. This whole experience has been, in a word, surreal. It has taught me a lot about life and well-being. It has also taught me how important it is to listen to your body, and to go with your gut. Above all it has taught me that, even when you feel down and out, never give up.
The biggest thing (and hardest at times) I have came to understand is that everything truly does happen for a reason. Through this horrific experience I have learned SO much – about myself, others, and life in general. I have found my purpose and came to understand what is truly important in life. I am THANKFUL for this.
It was such a difficult and frustrating time being ill, seeking but getting no answers, and feeling as though no one was listening. And, in light of that frustration, I am proud of myself for my determination. I am proud that I never gave up, and eventually, I found the answer to my question, and resolution to my issues. I am currently still recovering, taking one day at a time. I am finally able to drive again (after 9 months of not driving), work out (within moderation – I know my new limits), travel (which I find incredibility healing), and do most things I LOVE. I am learning and listening to my body every day and being kind to myself. I am so grateful for my family and friends, and for my life. Who knows what might have happened had I not had their support, and I write this today to lend a hand in support to others who may be struggling to find answers to their questions. It is so important to take care of, and listen, to your body.
My healing journey has been LONG and emotional. I am currently working on my next blog post to walk you through my healing process, all I have learned, the progress I’ve made, the ups and the downs and everything in between!
Thank you for reading my journey. I am now a certified health coach and love working with individuals who have chronic illness or have gone through medical traumas. Support is everything <3
Warmly – B