My 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 1cm. 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 2.5cm, 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 2.25cm. 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 2.6cm. We couldn’t understand, it was suppose to be a slow growing tumor.
My neurosurgeon wanted a 6 month mri follow-up. The 2.6cm 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 form rehabilitation and returning home.
When I returned home, I had family to look over me. I continued to stay on 1st floor and not climb stairs unattended.
I had a wheelchair and walker to assist in my daily activity. I had left face paralysis, my left eye didn’t function properly.
I had to take various drops: rewetting, antibacterial.
My Eye Surgeries
On January 12th 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 eye not working properly. Therefore, I had more bruising than would have due to taking ibupropren.
My eyelid surgery took 2-3 weeks for swelling, bruising, hemorrhage 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, 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.
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 doctor said he couldn’t perform an emergency cornea surgery.
He told us to go to a eye hospital to the emergency room. The hospital was 1 hour away.
We spent 5 hours in hospital. They performed eye exams, lots of questions about my medical history.
After, 5 hours 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, upon discharge asked
me to return to my cornea surgeon or them tomorrow (Monday) to cornea floor. The 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 mri surgery follow-up with my neurosurgeon. He said my acoustic neuroma
craniotomy surgery was very successful. The tumor was 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 appointment a week later.
March 29, 2017
We drove 45 minutes to the new cornea surgeon. He looked at my 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 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 (my neurosurgeon recommended). He said my eye is leaking. The cornea surgeon said I needed a 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.
Saturday, April 1st, 2017
I found myself in my room at 12 p.m. The nurses told me it was a 2 hour surgery. It seemed to be longer.
My surgeon 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 surgery follow-up visit. My cornea surgeon said my eye looks good.
He wrote me out scripts for eye antibiotics, eye steroids (assist cornea acceptance) and eye antibiotic ointment (outside eye).
We were pleased with the outcome. I have to visit for weeks to come to keep an eye on things. Cornea transplants could take a few months to a year to see improvement.
It takes time and patience. But, for me its better than a deep cornea scar which leaves you with: vision loss,
light sensitivity, pain, headaches and burning.
January 2018
I had my eye doctor follow-up visit. My cornea looks great!
In June of 2018, I will have my cataract surgery. My cataract is a result of the radiation and eye steroids throughout the process.
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 your 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 eye was tired.
June 18th, 2018
When I woke up on June 18th, my left eye remained seeing black. I called my eye surgeon and was asked to come to the office today. They took pictures and looked at my eye closely. He said it seems to be a retina detachment. I would have to cancel my cataract surgery (for tomorrow morning).
After my same day visit, I was sent to a retina specialist (which my eye 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 11pm. 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 doctor. 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 followups by my cornea and retina specialists. 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.
January 2019
I have monthly checkups 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
I will have my routine brain mri and March see my neurosurgeon. I will keep you posted.
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.
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.
Rosie Crafts is a website for creative crafts, artwork, scrapbooking and recipes ideas.
We have kids and holiday crafts and recipes for your whole family.
Thank you,
For more information, please click below: