Rosie Crafts Acoustic Neuroma and Eye Surgeries
2012 – I couldn’t hear in my left ear. Then, I went to my ENT to get a hearing test. The hearing test showed I had hearing loss in my left ear. After looking inside my ear, my ENT said she didn’t see anything like: wax buildup, ear infection ect. We had to find out what caused the hearing loss. My ENT sent me for a MRI of the head. A week later at my follow-up visit, my ENT told me my MRI showed I have a (benign brain tumor) called acoustic neuroma. One early sign of acoustic neuroma can be hearing loss. It was currently 1 cm. My ENT had said I would need to see a neurosurgeon to see what my options are. She made a phone call with a neurosurgeon she knew. But, the neurosurgeon was quite a driving distance .I had to think about my friends and family and what my options were going to be. After my diagnosis, I started to search for the best neurosurgeon for me. My first neurosurgeon said it was 1 cm (small tumor) and we will “watch and wait”. We waited and followed up with my neurosurgeon regularly for 6 months. As two years went by, it continued to grow. Then, it happen to be my neurosurgeon was going back to his country. So we were on the search for a new neurosurgeon. We had visited five neurosurgeons. When choosing a neurosurgeon, you want to find a caring, trusting, well mannered, motivated neurosurgeon.
2014 – I found the best neurosurgeon for me. By this time it was 2.5 cm, he had asked me “who told you to watch and wait”. He had discussed the options with us. My options were either gamma knife radiation or surgery. I chose gamma knife radiation over surgery. At the time, my two children were young and gamma knife seemed to be the best decision at the time.
March 2014 – I had my gamma knife surgery. I had six month follow-up visits with my neurosurgeon.
September 2014 – My 6 month follow-up visit, we had discovered a tumor shrinkage to 2.25 cm. My neurosurgeon and I were pleased it was shrinking. It would take time, but gamma knife radiation surgery can shrink the acoustic neuroma tumor.
March 2015 (my 6 month follow-up) – My mri showed an increased to 2.6 cm. We couldn’t understand, it was suppose to be a slow growing tumor. My neurosurgeon wanted a 6 month mri follow-up. The 2.6 cm was edema swelling from the gamma knife radiation.
September 2016 – I had my 6 month follow-up. My brain mri showed 2.7 cm x 2.9 cm. By this time, I had hearing loss, slight balance issues but nothing real alarming. My neurosurgeon recommended that I have a craniotomy (tumor surgically removed). It would be a 10-12 hour surgery. My tumor doesn’t seem to have responded to the radiation in shrinking my tumor. So we, scheduled for my surgery.
November 14th, 2016 – I had a craniotomy and had my acoustic neuroma tumor removed. It was currently 2.7 cm x 2.9 cm. My acoustic neuroma surgery was 10 hours. My neurosurgeon explained that my balance nerves had to be removed to remove the whole tumor. He was able to preserve most of my facial nerve. I was left with some left face paralysis but, overall should improve 6 months -1yr. After my surgery, I had some balance issues. I was in the hospital for 3 days in the recovery room .After the hospital, I went to acute brain trauma rehabilitation center. I received preventive medicines by my neurosurgeon, physical, speech, and activity rehabilitation. I continued to make improvements each day. After 2 weeks, I was discharged from rehabilitation and returning home. When I returned home, I had family to look over me. I continued to stay on the 1st floor and not climb stairs unattended. I had a wheelchair and walker to assist in my daily activities. I had left face paralysis, my left eye didn’t function properly. I had to take various drops: rewetting and antibacterial eye drops.
My Eye Surgeries On January 12 Th. 2017 – I had left eyelid surgery. It was a same day surgery. My neurosurgeon implanted a gold implant in my left eye. My implant was to assist in my eye opening and closing properly. When you have face paralysis, your eye or eyes may not function properly. After acoustic neuroma surgery, the facial nerve is affected due to tumor removal. The eyelid gold implant is necessary to preventing eye infection, eye dryness, and any other eye issues. One thing I learned, from my eyelid gold implant surgery: avoid ibupropren days before surgery. It was difficult for me because of headaches due to my eye not working properly. Therefore, I had more bruising due to taking ibupropren before surgery. My eyelid surgery took 2-3 weeks for swelling, bruising and hemorrhaging to heal.
February 2017 – My acoustic neuroma tumor removal and left eye gold implant surgery were successful. Throughout my recovery, I scratched my cornea and had vision loss. It was now time to see a eye physician.
January 2017 – After 3 weeks, recovering from my left gold eyelid implant surgery. I saw a local ophthalmologist who specialized in corneal diseases. I was regularly seeing the eye doctor twice a week for monitoring. She was monitoring my cornea for cornea thinning, infection and dryness ect. She explained due to my face paralysis and my eye not functioning this can happen. My eye doctor had me taking regular rewetting drops, and antibacterial steroid drops daily. She tried different eye lenses to protect my cornea. My ophthalmologist seemed to be kind, helpful and knowledgeable. I continued to see her regularly from January-March 2017.
March 2017 – During my ophthalmologist visit, she noticed I had a cornea hole and it was leaking fluid. My ophthalmologist referred me to a cornea specialist/surgeon. Friday the next day, we took 1 hour drive to a cornea specialist/surgeon. He gave me an eye exam and said I had a hole and it was leaking. In his office, my cornea was glued. The cornea surgeon asked me to come back Sunday morning for monitoring. He gave me his cell and told me to call if anything changes. On Sunday morning, we returned to the cornea specialist’s office. He noticed it was leaking again, he glued my cornea the second time. The eye cornea specialist/surgeon said he couldn’t perform an emergency cornea surgery. He told us to go to the eye emergency hospital. The hospital was 1 hour away. We spent 5 hours in the hospital. They performed eye exams, lots of questions about my medical history. After 5 hours of waiting, they said the glue is holding up and my eye isn’t leaking. They mentioned, they don’t perform weekend cornea surgeries. The cornea surgeons are not available on weekends. Then, after the eye hospital emergency discharge, they asked me to return to my cornea surgeon/specialist office or their eye hospital tomorrow (Monday) to the cornea hospital floor. The eye hospital gave me useless medications for my eye. I would never return there, 5 hours and nothing accomplished. Now, my cornea was glued twice to stop leaking. It seemed, because of my face paralysis and my eye working improperly, cornea transplant would be impossible.
March 24, 2017 – I had my 4 month acoustic neuroma brain mri surgery follow-up with my neurosurgeon. He said my acoustic neuroma craniotomy surgery was very successful. The tumor was a total removal. My next follow-up is in a year. But, he was upset with my vision loss of my left eye. He called his ophthalmologist/cornea surgeon. My neurosurgeon got me an appointment a week later.
March 29, 2017 – We drove 45 minutes to the new cornea surgeon/specialist. He looked at my left eye and saw it was glued twice. I explained my medical history and what led to this moment. He said the glue is holding as of now. The cornea surgeon/specialist also said I have a very deep cornea scar. It needs to be monitored closely. We were asked to return Friday. Thursday, we noticed my eye seemed to be leaking and sunken in again.
Friday, March 31, 2017 – We drove to the cornea surgeon/specialist (my neurosurgeon recommended). He said my eye is leaking. The cornea surgeon said I needed an emergency cornea transplant tomorrow morning. He made all the phone calls to his hospital, my insurance company and surgery pre- tests. Now, Saturday (tomorrow morning) at 5 a.m. I needed to be at the hospital. My emergency cornea transplant surgery was going to be at 7:30 a.m.
Saturday, April 1st, 2017 – My emergency cornea transplant, we arrived exactly 5 a.m. The hospital took my blood tests, EKG ect. My cornea surgeon started around 7:30 a.m. He explained to me before surgery that the goal was to implant a whole new cornea and grafting (protect cornea). Then, he would also stitch outside end of eyelid. It would help with my eye with healing and cornea due to my face paralysis.
I found myself in my hospital room at 12 p.m. The nurses told me it was a 2 hour surgery. It seemed to be longer. My cornea surgeon/specialist had spoke to my husband and wanted to see me in his office tomorrow (Sunday morning). There was no lifting, bending, driving or daily activity allowed.
Sunday, April 2nd, 2017 – We went to my cornea surgery follow-up visit, my cornea/specialist surgeon said my eye looks good. He wrote pharmacy scripts for eye antibiotics, eye steroids (assist cornea acceptance) and eye antibiotic ointment (outside eye). We were pleased with the outcome. I have to return to the cornea surgeon/specialist office in two weeks to monitor my eye, cornea transplant. It could take a few months to a year to see improvements. But, for me it is better than a deep cornea scar which leaves you with: vision loss, light sensitivity, pain, headaches and burning.
January 2018 – I had my left eye cornea transplant follow-up visit. My cornea looks great! In June of 2018, I will have my left eye cataract surgery. My cataract is a result of the brain radiation, eye ointment steroids and the eye issues I experienced.
March 2018 – I had my 1 1/2 year MRI/neurosurgeon follow up (acoustic neuroma tumor removal). Great news! No new tumor growth. My next follow-up will be March 2019.
Summer, June 2018 – I was scheduled for a cataract surgery for June 19th 2018. In preparation for my surgery, I had to take eye drops to prevent infection and swelling. The two eye drops are to be taken 3 days before you are scheduled surgery and they are to be taken each 4 times a day for 3 days. These drops are antibiotic and steroid drops. I took the drops given instructions by my eye cataract/cornea surgeon. Unfortunately, things didn’t go as planned.
On Father’s Day, June 17th, 2018 – After dinner, I noticed I was seeing a black open like curtain with very little light in my left eye. I went to bed and thought my left eye was tired.
June 18th, 2018 – When I woke up on June 18th, my left eye remained seeing black. I called my cornea surgeon/specialist and was asked to come to the office today. They took pictures and looked at my left eye closely. He said I have a retina detachment. I would have to cancel my cataract surgery (which was already scheduled for tomorrow morning). After my same day visit, I was sent to a retina specialist (which my cornea surgeon recommended). The retina specialist took many pictures and looked my eye over carefully. He said, I have a retinal detachment and it’s urgent to have emergency surgery tonight. So, we went to the hospital and they took bloodwork and EKG. So, my retina surgery was at 11 pm. The retina specialist put a gas bubble in my eye to fill air and prevent my eye from more retina damage. The surgery was about 1 1/2 hours. Then, I had to recover for a while in the recovery room. I was told to keep my head rested down during recovery. It was 3:00 a.m. by the time I was discharged. After retina surgery, there is no driving, lifting, bending, exercise or activity. The driving afterwards depends on your situation and to be discussed with your retina eye specialist. Also, your head should be down during recovery for a day or more to avoid further retina damage.
August 2018 – After my retina surgery, I had a cornea ulcer. My summer was continuous eye specialists follow up appointments. My cornea ulcer and retina is healed. I am now ready to get my cataract surgery in September. I hope to see in my left eye again. I will keep you updated.
Fall 2018 – I had my cataract surgery in my left eye. A lens with implanted and everything was successful.
January 2019 – I have monthly follow up visits with my eye surgeons. I go regularly for vision checks.
My vision in my left eye is limited because of the retina detachment and other eye issues I experienced. I can now see colors but no details. I have limited vision and no hearing in my left ear resulting from everything that has occurred. I currently have a Phonak cross hearing aid. It helps very much with my hearing.
February 2019-December 2019 – I continued to see my cornea and retina eye specialists regularly every 3-6 months to monitor my eyes.
December 2019 visit – my left eye has not been the same after my acoustic neuroma removal, facial paralysis, left hearing loss, left eyelid implant, cornea replacement, retina detachment and cataract surgery through these years. I just found out my left eye has tissue and more cataract from aging and eye issues. Also, I have cataract in my right eye that has been progressing at a rapid speed. We don’t know why this is happening so quickly at age 46.
February 2020 – I am scheduled to get laser surgery on my left eye hoping I will see some improvement. The laser surgery is a 10 minute office visit and no hospital stays or anesthesia. My laser surgery in my left eye is scheduled to be performed first. Next, follows my cataract surgery in my right eye. The right eye cataract surgery is a same day hospital procedure and recovery time at home. So, I hope for better vision in both eyes for the New Year 2020.
March 2020 – I am scheduled for my routine yearly brain mri and my follow-up visit with my neurosurgeon. My yearly visit is a follow-up to monitor no regrowth of the acoustic neuroma.
I hope to have my eyelid implant removed (resulting from my face paralysis and eye not functioning properly). Then I will be myself again and see in both my eyes I hope. One thing I learned in my journey. After a few neurosurgeons and cornea specialists/surgeons, sometimes it takes numerous doctors to find the right care for you. It is at your best interest to get different opinions. It is your life and your family. I also wrote about my journey to inform people of signs to look for: hearing loss, balance, face paralysis and eye problems. I want to let you know that make sure you get eye medications to prevent infection, dryness and other eye problems. These are things to look for after acoustic neuroma craniotomy surgery.
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