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I wish I knew about this group

I was diagnosed with a frontal temporal meningioma in June 2020 and quickly had it removed. It was simple! What wasn’t simple was the grapefruit sized CSF leak that developed 1 month later. The PA told me the swelling was normal (despite me insisting that it wasn’t) and would go away in 6 months. I spent all of 2020 afraid to leave my house with no idea what was wrong with me. My grandma urged me to send them a picture finally and they realized how WRONG the PA was. 5 surgeries later, they were finally able to repair the leak but I am a shell of who I was before. I’ve learned how important it is to pushback when you know something is wrong.

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How can I still be alive after everything I've been through

#Depression I'm sure I have shared different fractions of my life over time, but sometimes I feel the need to think about and share my crazy journey. One thing is for certain, time doesn't always heal all wounds but it sure does shine a mega spotlight on how strong and steadfast I have had to be, to just exist in this crazy, unpredictable journey called life.
Despite everything I've been through, God was and continues to work in my life. He has been and will continue to be at work in the lives of those who have a personal relationship with Jesus. The big picture may not seem clear right now, but He is opening doors of blessings and opportunity for so many people, but He also closes doors that He knows are not what is best for me and certain people right now. The difficult part is trusting His perfect timing. Keeping the faith, when we want to throw in the towel. I am reminded that NOBODY knows suffering better than Jesus. While that breaks my heart, it's also my greatest source of hope!So here is that message I wanted to share, I hope it gives some insight and I pray it touches your heart, even if in a small way.❤ "I am 46 years old. I've been married to my husband Paul for 24 years. (but we've been together since 1995) We have 2 children, Stephanie is 22, and Sam 21. I know that over the past 22 years God has used my chronic health issues to grow my faith and He continues to use it as a doorway to share my faith with so many people! My conditions can be all-consuming. I pray every day for a miracle, for God to perform a miracle for me, for everyone. I pray that God will cure me of ALL my health conditions which include: Gastroparesis, Fibromyalgia, Pseudotumor Cerbri, Lupus, Lupus Anticoagulant, Iron-deficiency Anemia, Hypercoagular syndrome (a blood clotting disorder), Antiphosperous Lipid Antiviral syndrome (another blood clotting disorder), CFS (chronic fatigue syndrome), IBS-D (irritable bowel syndrome with diarrhea), Uric Acid kidney stones, A brain tumor, meningioma, (albeit benign as of my last MRI, but I still have to get it checked regularly to make sure it's not metastasizing), Raynaud's syndrome, DDD,(degenerative disc disease) Type 2 Diabetes, Depression, Anxiety, and the list goes on...Over the last 23 years (basically, since I had my kids) I have suffered from ongoing health issues. I had double hernia surgery, my gallbladder removed, my appendix removed, ovarian cysts that ruptured & removed, dozens of surgeries to remove kidney stones w/ stents placed in both ureters. Lithotripsy to crush large stones, multiple times, on both sides. Right knee surgery to replace my ACL. Left-hand surgery to repair a break and dislocation to my pinky finger. Surgery on my left thumb bc of a bad infection (where they had to remove my whole thumbnail), I've also been on (first-from 2015 Coumadin since 2005, when I was diagnosed with my blood clotting disorders. Then I began taking Xarelto last year.
A lumbar shunt was FINALLY put in my brain.


New to this group

Just wanted to say hello, and tell you about me. My name is Tanya, I had a meningioma brain tumor, and had three craniotomies between 2010 & 2011. They left me with double vision in my right eye, and deaf in my right ear. I had been living in North Carolina since 2000, my ex husband was a U.S. Marine, and in December of 2017, I was diagnosed with brachial pneumonia, and after several visits to the doctor, and being told that I just wanted attention, in February 2018, apparently I was staying with my mom, when I called 911 for a wellness check, & thank goodness! Long story short, I wasn't "supposed" to make it through the night (8% chance). To save me, I was put on ECMO for 2 weeks. Since I woke up in April of 2018, I've had several procedures, including losing several toes from vasopressors, muscle flap surgery to repair a femoral artery rupture, and open heart surgery, (when air got into my IV line causing two strokes). Most of these were from the canulas used during ECMO, that weakened the arteries in my leg & heart. I should also mention that from the strokes, I have dystonia in my left hand, mainly my wrist, and my left index finger bends in such a way that I'm unable to tap the tip with my left thumb. So, that is my story. I would also like to mention that I have a Bachelor's Degree in Psychology, and a Master's Degree in Human Resource Management, just to give some insight into me as a whole.


How does one cope with feeling and living life differently due to an illness? Not being able to see my face in a mirror has been a change.

#CavernousAngioma #Meningioma #lymphoma #Schwannoma


Any advice for the super stressed & depressed? #Advice #SpecialEducators #Meningioma #Depression #Anxiety

know that may sound ridiculous, but for a while I thought I had my anxiety under control. I know my triggers, but I’m still crippled and taking baby steps does not work...I remain stuck.
I’m tired and cranky and depressed and unhappy and getting to the point where my bed is my salvation, which I know is unhealthy.
The idea of Exercise sounds like the devil. My limbs hurt. I’ve developed TMJ... and the idea of spending time with people is not a priority... BUT...I know I need to change and it will get better... any advice (all welcome) to speed things up?


My brain tumor

Months of being told I was just overly stressed because my ex husband was deployed on a ship, I was working as a substitute teacher, and working on my Master's Degree. My doctor FINALLY admitted that I should see a neurologist, who sent me for an MRI! Meningioma brain tumor - utter PANIC - my grandma died from a glioblastoma. The first neurosurgeon that I saw told me that it was much worse than I thought; it was wrapped around the artery that connects the brain to the brain stem, and that he didn't feel comfortable touching it,but he knew an AMAZING neurovascular surgeon, and he referred me to him. Dr. Gavin Britz, saved my life!

Part 2 - my first craniotomy was September 10, 2010, and did NOT go as planned AT ALL. I went in for a procedure on the 9th, where the plan was to cut off any blood supply to the meningioma - FAIL! It just felt like my brain was on fire. So, the next day, I went in for my first craniotomy. They made burr holes, and cut a circle out of my skull, but when my neurosurgeon went to pull it off, I had a serious bleed. So, on to plan B, which entailed A LOT of testing, and more risks - which I happily accepted, so I could be alive for my Sam Stearns

Part 3 - LET THE TESTING BEGIN! First thing first, my neurosurgeon had to come up with a new plan - through my right ear canal. The "damage": I would be permanently deaf on the right side. Possible risk? The nerve that controls half of my face is extremely sensitive, and I could lose function. My question: do I get to watch my daughter grow up? The answer was yes, so I was all in. The tests took all day, and they were interesting, to say the least. They put water in my ear, & put me in a weird chair to test my equilibrium - yuck! Then they tested my hearing, we've all had that done... Then we waited for surgery to be approved, and schedules to be put together.
[ ] Surgery #2 - October 12, 2010. FINALLY! My neurosurgeon told me that he would NOT be removing any tumor from my cavernous sinus because it would give me "googly eyes." Very technical term. Lol. After I woke up, he was very upset because my right eye had turned all the way towards my nose. This was nothing, compared to the balance issues I had.
[ ] Part 4 - physical therapy
I found an amazing physical therapist about 20 minutes from where I was living in Wilmington, NC. Her name is Anne, and she taught me how to walk, and balance so well, that she, basically, had to make me leave. Not having an inner ear, on my right side, took A LOT of getting used to!



So, I have had a ROUGH 10 years! In 2009, I was diagnosed with a meningioma brain tumor that was wrapped around the main artery from the brain stem & the brain. I almost died during the first craniotomy, because I had an artery attached to my skull, that started to bleed when they removed it; so my neurosurgeon decided to take a different approach, through my ear canal. This left me permanently deaf on my right side. Also, my right eye has permanent double vision. BUT, I was able to be alive to watch my daughter, who is now 21, grow up. In 2018, while my daughter was in her second semester in college, I ended up back in the hospital, this time, they told my mom to call my family because I wouldn't make it through the night. WELL, after 2 months on ECMO, rehab, MRSA, an aneurism on my aorta, I'm still here. Oh yeah, during the surgery, I had TWO strokes! We are now living in Ohio, closer to family; we were in NC - my ex husband was a Marine, and my mom, my daughter, and I all live in one house, which definitely has it's challenges. My mom & daughter are VERY similar. Between the age difference, anxiety, etc. They butt heads A LOT. I often feel like I'm being pulled in two opposite directions. I feel like I'm losing my mind