I last wrote about this journey in April. At that time I was anticipating receiving a call to schedule my BAHA surgery. I expected that call to come any day. It didn’t.
BAHA is a bone attached hearing aid. It’s a type of cochlear implant. It is my possibility of once again being able to distinguish where sounds come from. Until my BAHA is attached and I receive the exterior part, I cannot figure out where people are that are talking to me. Whether they are behind me or to the left of me, I have no idea. It could be a difficult thing if a stranger were sneaking up on me. My husband, who should know this is a problem, will walk up behind me and start talking. That is when panic takes over. I look to my right and to my left and then behind me until I find him.
Surgery date at last
The call for my surgery date came on July 7. My surgery would be July 22. So there were two weeks of getting ready. I had a phone appointment on July 8 to go over my surgery. On the ninth, the audiology department called to set up my post-surgery appointment to receive the exterior part of the BAHA on August 20. On the twelfth of July, I had my MRI to check what my beginning size of my brain tumor will be for future MRI’s. This is so that I can go in every 6 months to a year to see how fast, if at all, it is growing. If it were to grow quickly, I could face the decision to have another surgery in my lifetime. I’m not worried about that now. I’m praying for no or slow growth.
Also on the twelfth of July I had the standard pre-surgery blood work. On the 18th of July, a Saturday, I had my Covid-19 test. This was to allow them to have my results before surgery on the following Wednesday, July 22. See this prior post about the Covid-19 test.
My internal BAHA is attached
On surgery day, I had to be in Sacramento by 7:30. It’s a one and one-half hour drive. My sister brought me because my husband was out of town for a few days. The surgery was outpatient with an estimated one-day recovery. Once I arrived, I had to take off everything except for my underwear and put on two gowns, one opening in the front and one in the back.
Once again I received a shave of my hair. This time I was awake for that part and was surprised that my neurosurgeon actually did it. He also used a black permanent marker on my left ear lob with his initials so there was no error on which side of my head they were working. Apparently my neurosurgeon is not the best at clean up, because there were still some loose sections of hair left behind to annoy me. As long as he knows what he is doing when he is cutting open my head, I was fine. Due to Covid-19 I was still wearing my mask that I brought from home.
This surgery was running behind, over an hour, so they started me on the anesthesia before they moved my bed to the surgery room. So I have no memory of being in the surgery room, no memory of the bright lights shining in my face, or any background music. The next thing I remembered was being back in the waiting area, but on the surgery “completed” side. I was asked if I wanted any crackers or a drink. I had on a mask, but it wasn’t the one I wore in, that one was folded up in the pocket of my gown.
Once I was back home, I went to sleep for a while. The night before I had made a dinner that gave me left overs for the next few nights. The left side of my head hurt and I couldn’t sleep on it for nearly a week. I had a new scar in a different location and glue to hold it in place, no exterior stitches on the outside. And of course I have a lump on my head where the interior part of my BAHA is attached to my skull. I received my card to show to TSA when I fly to explain why I set the machine off. It’s the size of two credit cards on top of each other and permanently attached to each other .
Continuing Physical Therapy
I had my first in person physical therapy appointment in months. I insisted since I haven’t been doing my exercises for weeks. It was great seeing my physical therapist again. I talked about how I had so much problems on vacation with walking on uneven ground. Consequently, I left there with a cane. I’ve used it several times and it is a help. It gives me more confidence, but makes me feel old.
Two weeks later my physical therapy now involves walking backwards and walking over plastic cups, in lieu of the six-inch tall bars she had on site. I don’t know how much longer I will continue physical therapy. I am now making some progress again, but it’s slow.
My exterior BAHA
My hairstyle has been a work in progress. This year, in anticipation of my second surgery I had it cut shorter. I have somewhat naturally curly hair. So I used water and gel to style my hair, along with growing out my bangs. After my second surgery I started parting my hair on my right in anticipation of wearing my BAHA audio processor on my head. I wanted the hair on my left side to be a bit fuller to help cover the BAHA.
A month after my surgery I had my appointment to get the outside part of my BAHA. I was really anxious about the appointment. This was my opportunity to see if the surgery a month prior had worked. First I had to go through a series of sounds in the booth with the audiologist to set up my BAHA. Then she went over all the paperwork and had me sign some documents. I learned that my batteries could last from one to ten days each. So I need to always take extra along if I go out of town. One more thing to pack.
While leaving the audiologists office I was excited to hear things differently. On the way home I could hear my husband talking to me as if I had hearing on my left side. No more turning toward him and having him repeat it. The BAHA was a success.
Presenting my BAHA
This is a picture of my BAHA next to a quarter. I hold it up to the lump on my head, under my hair, and it attaches by way of a magnet. The clip in the picture is attached by fishing line to the BAHA. I clip it to my hair so that if the BAHA were to fall off, I would not loose it. It’s not cheap to replace.
I have one accessory and that is my remote control, which I haven’t got the hang of yet. And I also have nine different covers, which I don’t expect to use, except for the grey one, one day soon. If I want to spend the extra money I can get additional covers (floral, pattern, etc.) and a “miniTek” which allows my Audio Processor to connect to my phone.
Normal or not?
Am I really back to normal? No. Will I ever be? No. This may be the farthest I go. Or I may see a bit of improvement. I still have issues with tinnitus and balance, but they are both so much better than right after my first surgery. I wonder if my normal sense of taste will return. And I have one eye that opens wider than the other. Everytime I see my neurosurgeon he says “let me see you smile” and I do. It’s good to know that my smile is back to normal.
It didn’t take long for my normal life to change dramatically. It has taken just over nine months to come this far. I was initially expecting a two month or less recovery. I still have some balance issues. I’ll use a cane now and then. Plus I will always live with a BAHA. But, there is something that hasn’t changed from the day I found out I had my brain tumor. God is in control and I will always trust His plan for my life.
If you would like to read the prior posts about my brain tumor here they are:
The word surgery itself scares me! You are definitely strong and wish you a successful journey in all this you are facing!
I have had quite a few surgeries in my life when I think about it. The worst part is laying in ICU. Fortunately, I’ve only had that one time that lasted more than a day. Thank you for your good wishes. May you never have to have a surgery. But if you did, I’m sure you would survive.