Q. How was your meningioma discovered?
A. A very bad headache sent me to the ER. First a Lumbar Puncture to rule out a stroke then a CT found the baseball-sized “mass.”
Q. How did you source your doctor?
A. Insurance referral.
Q. What course of treatment did you undergo?
A. Stealth-guided craniotomy, 10 and a half hours. Seven days in ICU, 5 days in step-down unit because of paralysis from neck down. Six weeks in rehabilitation hospital (able to take 30 steps by now with walker). Developed DVTS. Put on blood thinners (shots in the stomach), also contracted staph infection in craniotomy incision site. Sent back to hospital; surgery was performed to wash skull bone staph infection was in. Vitamin K to reverse blood thinners before surgery then sent home with PICC Line IV antibiotics.
The infection wasn’t clearing up so I had a second surgery to wash skull bone of craniotomy (bone flap) done three weeks later. I was sent home with IV antibiotics. Then I developed a cerebral spinal fluid leak and infection. It still wasn’t clearing up and also developed second yeast infection. I was sent back to the hospital for removal of bone flap and to repair CSF leak. Lumbar Drain and IV antibiotics. Sent home with PICC Line again for another 6 weeks of Vancomiacine IV antibiotic treatment with a home nurse. Home physical rehabilitation for 10 weeks, then 6 months of facility physical rehab.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. How hard it was on my family. Also the seizures, headaches and walking with a cane have been very difficult for a person my age.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I am currently seeing a neurologist. I had gamma knife done April 6th of this year on residual tumor that had grown to almost its original size and will be having the next gamma knife treatment (the meningioma tumor was too large to do all at one time) in October or November of this year. I am on disability and can no longer work. I have bad headaches daily and need medication for them. I also have leg and back pain, which the doctors are calling neuropathy. I still have lower extremity weakness and walk with a cane and lose my balance often. I also have a seizure disorder and take AEDs.
Q. Who were your caregivers and how did you interact with them?
A. My husband was my sole caregiver and our relationship suffered greatly from it. After three years we are just now mending our relationship. My husband and two children all suffered more than I did through this entire ordeal.
Q. How was your life changed by this experience?
A. My career was taken away. I used to be in accounting. I can hardly add two and two anymore. I was the main bread winner with benefits and my husband was a stay-at-home Dad and did construction contracting. We have had to entirely change our dynamic and he had to entirely change careers. I can’t spell anymore either.
My children have both been in therapy. My daughter went through a terrible depression and is just now back to her happy 12-year-old happy self. We have a FOR SALE sign in front of our house as I am writing this. We went through a bankruptcy last year and we had to go on food stamps for a while. We had never needed any help from anybody before and had a very comfortable life. Now we have to sell our beautiful home and move to a place we can afford. But I wouldn’t change a thing.
I have learned so much and met so many wonderful people and have gotten to know my family and my second family and who my friends really are and what is really important in life. I have learned that Meningioma Mommas is a very important part of my life now and keeps me sane. That the research is even more important because my children are most important and I would never want them to go through this.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Stay strong; keep your sense of humor, and most of all LOG ON TO www.meningiomamommas.org
Q. Knowing what you know now, what would you have done differently, if anything?
A. Made the neurosurgeon take the bone flap out the first time instead of the third and changed doctors sooner when the one I had kept insisting for 6 years that I had sinusitis and ear infection and vertigo.
Q. How would you assess your quality of life today?
A. Better than ever!!!! It just includes a cane and lots of doctors and pills.