‘There’s only a 50% chance this procedure helps.’ I was out of options and exhausted. And then my brain surgery failed.’: Mom candidly shares chronic illness, life spent in hospital

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“I’ve been ‘sick’ longer than I can even remember, starting with getting meningitis at 6 weeks old. My parents were told I might not make it through the night. But I thought that would be just a story my parents mentioned in passing at family gatherings as I got older, and I wouldn’t ever actually feel sick. After my meningitis diagnosis, I started having trouble walking straight at a really young age, and my feet started curving in. I eventually had to have my right foot corrected with a large pin inserted into it while I wore a cast and used a wheelchair for a while. I stayed at a Ronald McDonald House for that leg surgery at just 7 years old. After the surgery, I had to completely learn to walk again. I remember the doctor just pinching my nose with pliers and telling me to breathe in, then just yanking out the pin from the bottom of my foot. I then used a brace on that foot and used a walker after I finally left my wheelchair. I was lucky enough that people were so sweet, and my friends would push me around in my wheelchair at school.

Mom when she was little with her family
Courtesy of Chey-Anne Eden Serna Grissom

I specifically remember when I got stuck in the road with my wheelchair, and my neighbor’s teen son came running and helped me out of the road before a car came and hit me. I was so scared but so thankful for everyone’s kindness, and I couldn’t wait to get out of that wheelchair. I wanted to be ‘normal’ and free to run and play sports like all the other kids around me. As soon as I could walk again, I joined the softball team at school and an after-school cheerleading program. I was even mobile enough to pick my toddler brother up from his nap and get him out of our house that was burning when I was less than 8 years old. At the time, it was just my 10-year-old brother, myself, and my toddler brother in the house because my grandmother went to a neighbor’s house to make a phone call (pre-cellphones), and luckily, none of us got hurt. I remember being happy I could walk well enough already when that happened. This was maybe a year after I got out of my wheelchair if I remember correctly. I was tough. I absolutely loved being up and active and never wanted to sit down. I was positive I’d never use a wheelchair again, even in old age! I was a go-getter and had the most positive outlook on life, which I kept until things started to change when I was around 11 years old.

Mom when she was younger with her family
Courtesy of Chey-Anne Eden Serna Grissom

I started having painful period cramps and heavy bleeding that left me anemic and unable to get out of bed. I was first told it was gastritis and even had my gallbladder removed later. When I went to an OBGYN, he diagnosed me with Endometriosis and eventually adenomyosis and fibroids. I was told the chance of ever having children was very low, and I was immediately put on birth control to help the Endo, and eventually, I was also put on Lupron. I even had a D&C to see if that helped. I developed anxiety and depression soon after and even had panic attacks resulting in hyperventilating because none of it seemed to help. It was painful and exhausting to live with. I was determined to be a mother one day and never let those diagnoses keep me down either. I was even in a severe car accident at 14 years old and needed 30 stitches to my face, but again, I survived and recovered just fine and had the best attitude I could, no matter what I went through. Everyone else in the car was fine as well, luckily.

And aside from the occasional foot pain and the endo stomach pain, bleeding, and normal endo issues, I felt on top of the world. I took my anxiety and depression meds, and I loved life and everything about it; though I did have to go on a 504 plan at school for the days I couldn’t get out of bed due to the Endo. It didn’t phase me though, and I thought if I could get through that, there was no excuse to not be happy, productive, and have a happy life. I met my now ex-husband when I was a senior in high school, and we just dealt with the issues I was having as best we could and tried to just be happy and enjoy the rest of our teenage years. On Halloween 2010, we went out trick or treating, and my feet started getting swollen and the pain was unbearable. I attributed it to random pain from my previous surgery as well as the fact that we walked all over our small town.

However, at the end of the night, my feet were so swollen, my now ex-husband had to carry me to the last few houses and then home. I thought I would be back to normal the next morning and shrugged it off, but when I woke up, my feet and legs were purple, and I couldn’t stand at all. I called for my parents, and we left for the family doctor’s office immediately. I couldn’t walk into his office, so I was wheelchaired in. I was so annoyed and just absolutely frustrated that I was in a wheelchair again at 18 years old.

Mom in hospital bed
Courtesy of Chey-Anne Eden Serna Grissom

My doctor took one look at me and sent me to the E.R., where they promptly got me a room and ran a million tests. I was asked if I had walked in a field or forest-like area, and I said yes. I walk my dog in a field behind my home daily. Then they saw it, a tick bite on my leg, and from there, all I remember is spending a week in the hospital, not able to get up because it was too painful to stand. I was told I probably had Lyme disease that wasn’t showing up on tests yet, and arthritis might come later. I was then sent home once the swelling and pain subsided. I thought it wouldn’t be too bad since I could walk out of the hospital. I still only had foot pain a few days a week and with a lot of activity, which made me need to sit down to rest often. I also had Endo issues to deal with after that and thought that it couldn’t get any worse from here, anyway. There’s nowhere to go but up when you hit rock bottom, right? I ended up marrying my now ex-husband and having two children together with very high-risk pregnancies due to Endo, incompetent cervix, and severe hyperemesis gravidarum.

My first child was a preemie at 35 weeks, and my second lost oxygen to his brain during delivery which caused him to have cerebral palsy. However, I was told by my OB that I couldn’t have Lyme disease because it would show up on tests, and it’s just arthritis and plantar fasciitis causing the pain in my legs and feet. Even then, I dealt with everything fine. I felt like nothing could keep me down. I eventually divorced and became a single mom but worked at a well-paying job, took Tylenol and ibuprofen for my pain, and supported my two little boys on my own without issues.

mom taking selfie in bathroom while pregnant
Courtesy of Chey-Anne Eden Serna Grissom

A year after my divorce, I met my current husband on Tinder in 2015 and fell madly in love. Nothing could stop me. I was on top of the world. I then had everything I ever wanted: my beautiful children and their amazing stepfather. I managed my medical issues quite well while also dealing with my family life, like my son’s medical issues. In my mind, nothing in this world could keep me down. Throw anything at me, and I would conquer it and come out just fine. I went to a foot pain specialist and was told I have a genetic abnormality in my ankles. I have arthritis, which I was expecting to have, and it was causing the foot pain. I bought some special insoles from them, and they seemed to help enough to get on with my day like normal. I got along so well that my now husband and I decided to have more children. We sadly miscarried our first child early on in the first trimester, but I was still determined to add more kids to our family because my dream was always to have a big family like I had growing up, and my boys were so happy and loved. I ended up going through two more pregnancies with an incompetent cervix and severe hyperemesis again.

This resulted in a PICC line on each arm because the first one got infected and lasted for months until I delivered. I had to insert my own meds into my PICC line 3 times a day for months but was just happy our baby was growing fine and was healthy as can be. Didn’t even have to stay more than a day in the hospital! Our first little boy was born at 35 weeks, completely healthy, and none of my first 3 babies ever needed a NICU stay. Sadly, both of our youngest had colic, but luckily, nothing that would hurt them long-term. Our last child was also diagnosed with a subchorionic hematoma when I was about 12 weeks pregnant with him, and I was advised to abort because it took up more than half of his gestational sac and I’d probably miscarry anyway. I remember bawling like a baby alone in my car because my husband was at work when I got that news. I remember at nearly 17 weeks going into preterm labor and being told there was nothing they could do. They sent me home.

I remember thinking I was going to give birth to him stillborn at home and having a severe panic attack. Later, I got weekly progesterone shots to help me have a higher chance of not going into preterm labor again. I was so sure I’d be burying my much wanted and loved baby, but I carried on and stayed on bed rest until 35 weeks when my water broke while I tried to tidy up the house a bit for his arrival. I was peacefully sleeping when he was born because a nurse lifted the blue pad they had under me to change it, and his little head popped out. Easiest birth ever, I thought. He was perfect, and I was in awe and amazed that he survived. He was finally here, and everything was okay! Then I started having stomach pain and attributed it to when they massage your uterus after birth. The thing is, it was worse than I had ever experienced, and I was released anyway. They kept my baby in the NICU because he wasn’t eating yet. I lasted one hour at home before returning because I was in tears and couldn’t stand or lay without feeling like I was being cut open with no pain meds. Turns out, my water broke more than 12 hours before he was born, resulting in sepsis of the uterus. I stayed about a week in the hospital, and he stayed longer in the NICU.

Mom holds newborn next to husband
Courtesy of Chey-Anne Eden Serna Grissom

At first, I couldn’t hold him because he couldn’t be brought to me safely, and I couldn’t walk to him safely either. I thought that was the worst thing I’d ever have to go through, even after the medical issues I had been dealing with. While raising a special needs and completely mute child and his older brothers. Boy, was I wrong. When all that was over and we were finally home and settled for a while, I decided to have a tubal ligation. I had my 4 boys and my wonderful (now)husband, and I decided adoption would be best to bring 2 little girls into our family once our newborn was potty trained in a few years and I had recovered from everything a bit more. Then 2 months after giving birth, in April 2019, I had my tubal and went home just fine to recover and enjoy my 4 little boys.

Newborn baby
Courtesy of Chey-Anne Eden Serna Grissom

Three days after my tubal, I randomly woke up feeling extremely dizzy and could barely walk. I felt like I was on a boat that was swaying. I couldn’t stand. I was also unusually fatigued. I went to the E.R., and they ran the usual tests. An EKG, cat scan, and blood tests said maybe I was dehydrated or just anemic because I was still bleeding from birth, and the Endo was so severe. I was given Meclizine for vertigo and sent home, but it didn’t work. I thought maybe I had an ear infection, or maybe they were right about the anemia causing vertigo. Each doctor checked me out, ran tests, and sent me home again with no real answers. I decided to get a hysterectomy at only 27 years old and thought maybe that would take care of the vertigo since I would no longer have heavy bleeding for months straight.

After the surgery, I was still the same. At my follow-up from surgery, I mentioned that it didn’t help, and I still had trouble standing and walking and felt dizzy and unbalanced 24/7. My doctor thought I might have had a stroke and ran more tests, but everything seemed normal, so I was referred to a neurologist. My neurologist decided to finally give me an MRI with and without contrast on my brain and an MRI on my back cause I had recently begun having back pain, which wasn’t normal for me. What the tests showed turned my whole world around. Not only did I have a degenerative back issue, but I was told I also had a Chiari malformation of the brain and that it can become symptomatic after having an epidural which I had just months earlier.

It could have randomly started becoming symptomatic around the age of 30 for no known reason. I was 27 at the time. You know, in movies, when someone gets bad news, and their whole life flashes before their eyes, and they zone out, and the world around them starts spinning, and they can’t focus on anything happening around them? It was like that for me. I could barely hear what my neurologist was telling me because I was so shocked. I just wanted to break down. I had already been through enough, and I didn’t think I could go through anything else and come out okay after. He told me it was bad enough to need brain surgery called decompression surgery if no meds helped my symptoms. He also mentioned without the surgery, I had a greater chance of dying in my sleep, sleep apnea, blindness, and many other issues that could happen any day without warning.

Woman takes mirror selfie post surgery
Courtesy of Chey-Anne Eden Serna Grissom

I walked out of that office and told my husband what he said about my cerebral tonsils falling into my spinal canal since he watched the kids while I went in alone. He immediately started Googling and trying to help me understand what I was just told, but he barely understood it himself. I came across articles of other people dying in their sleep, having severe neuro issues and not-so-great quality of life, and I freaked out, of course. I had a wonderful husband and 4 miracle babies to take care of. I wanted to see them graduate, maybe get married, or even have kids of their own one day. I wanted to adopt 2 little girls and spoil them with love like we did our boys. It all seemed too impossible at that point. What if I was just gone one day? I was paralyzed with anxiety and depression just from the thought of it all.

I took a few days to call back for a follow-up and start a treatment plan. I was referred to an ENT for vertigo since I was really wanting to avoid brain surgery. I had super long bouncy curls down to my butt and didn’t want a patchy bald line going down the back of my head and didn’t want to shave my hair completely. Plus, brain surgery is just scary, period. The ENT tried a sinus surgery first to ensure it wouldn’t help since I always had minor allergy issues anyway. It didn’t help at all either. That ENT later referred me to vestibular therapy for a few months, but again it didn’t help much, if at all. If anything, it taught me how to catch myself if I fall, but that was it. I was out of options at that point and just mentally and physically exhausted.

I was referred to a neurosurgeon who told me there was only a 50 percent chance for the surgery to help. He didn’t think I was a good candidate for it because of how symptomatic I was and sent me home with info on installing disability rails around my house to avoid falls. As the months went on, I was trying different meds and physical therapy. I started feeling shooting pain and numbness in my hands, feet, neck, and shoulder area. I developed ocular migraines and severe eye pain as well. I stopped driving completely and had to rely on my husband to drive the kids everywhere and me. My head felt like it was on fire and about to explode daily, which I finally realized and was told were Chiari headaches and vestibular migraines. Less than a year after it all started, the pandemic hit, and I found a new neurologist surgeon a few hours away who knew more about this disease. I was finally scheduled for brain surgery during all the pandemic chaos at the end of June 2020.

Woman has patch covering over surgical area
Courtesy of Chey-Anne Eden Serna Grissom

At that point, I was actually excited to get it over with so all my symptoms would stop or at least lessen and I could finally go back to dealing with my original issues and loving life despite them. I shaved my head and cried like a baby cause I didn’t want to lose my long beautiful curls, but this was more important. It may actually help me feel normal again, so I pulled myself together and went in with a positive outlook, no matter how scary it was.  After the surgery, I was told the surgeon didn’t even have to open my dura because my brain immediately decompressed. My brain tissue went right back to where it was supposed to be and he could already see a huge difference during surgery. He didn’t think he needed to go further. I took that as a great sign, and the only issue was  I was told I could have 1 visitor with me overnight, even with Covid protocols.

I have anxiety and panic attacks, so I needed that to be true. However, once I woke up from surgery, they finally told me I couldn’t have my husband spend the night. I had a full-on panic attack and started freaking out and sobbing uncontrollably. I ended up signing myself out of the hospital a few hours after brain surgery against medical advice and slept laying down on the backseat of the car for the nearly 6-hour ride home from Austin, Texas, to the Rio Grande Valley.

Family were watching our kids at the time and I couldn’t wait to see our boys again. When we got home, I took my prescribed pain meds, saw my kiddos for a little while, and then fell asleep in bed. Still excited to just recover and finally have the pain and vertigo go away for good in a few weeks, as I was told would probably happen by my new neurosurgeon.

Surgical area healing slowly
Courtesy of Chey-Anne Eden Serna Grissom

Weeks went by, then months went by, and there were no changes in symptoms. My brain surgery failed. Nothing seemed to help, not medicine, not physical therapy, and now brain surgery failed too. That’s when my depression and anxiety escalated to the point I became suicidal. I just didn’t want to live like that anymore. I felt hopeless. I now needed a walker and a wheelchair at times, and I was so sure I was done with that when I was younger. I just couldn’t handle that nothing was helping. I was even told if I couldn’t find anything to help my symptoms, I might want to consider a 2nd brain surgery, but this time with the dura being opened. It was still a low chance surgery would fix me or even lessen the symptoms. At that point, only my amazing kids, my loving supportive husband, and my family kept me alive every day. They kept me going when I thought I was going to give up. I was in pain and dizzy daily, and I could no longer hold a job or take care of myself, much less my children.

I relied on my husband and family members’ love and generosity to get by daily. I eventually started going to therapy via telehealth and trying new medications for my anxiety and depression. I was referred to a local pain clinic for my back pain and pain head to toe and a vertigo specialist from San Antonio who just moved to my area this year. I was given a bunch of steroid injections (maybe 30 to 50 injections, but I didn’t count them) in my back for the pain and my pain specialist told me I also have fibromyalgia from the stress and trauma of it all. Still, sadly those injections didn’t work, so I was finally prescribed a nerve pain medication that seems to give me more good days than bad right now.

I am now waiting on approval from my insurance for vestibular migraine injections that should help my vertigo. I still use a walker and wheelchair and have terrible pain days, and still feel dizzy daily. I’ve overcome the severe depression and panic attacks and no longer feel suicidal. I feel like there is still hope for me. I’ve gotten a new perspective on life with just therapy and new meds. I’m just happy to be here for my wonderful husband and sweet funny adorable kids. I may eventually need to try more surgeries, more mental therapy, more physical therapy, more meds, and may even need my wheelchair and walker for the rest of my life. Still, I’m determined to never give up and make it a long one and be here for my loved ones, no matter what, because with the love and support I have, I’m positive I can get through anything through sheer force of will.”

Mom and her family together post everything
Courtesy of Chey-Anne Eden Serna Grissom

This story was submitted to Love What Matters by Chey-Anne Eden Serna Grissom of San Juan, Texas. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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‘Calm down a little. Sleep it off.’ My baby had an egg-sized lump on his skull. I was told I was ‘just a stressed out momma.’: Baby diagnosed with Chiari Malformation after mom’s concerns brushed off for months, ‘I’m so glad I trusted my gut’

‘If we waited 2 more weeks, you would’ve been paralyzed from the neck down.’ I was in and out of consciousness. Death wasn’t the only thing on my mind.’: 15-year-old undergoes brain surgery after feeling dizzy, discovers rare chronic brain condition, Type 1 Chiari Malformation

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‘My husband said, ‘My chest hurts. I feel like I’m having a heart attack.’ I started getting angry. He wasn’t demanding answers.’: Mom delivers triplets after finding husband has Chiari Malformation, ‘Each day I am more grateful’

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