I am excited to be writing my first response since I went in for surgery three weeks ago! Being alive feels so great and accomplished. There was a period of time that I didn't think I would survive this surgery with all the risks involved, and I am so very thankful for my surgeons and team that cared for me for the long surgery on the trigeminal schwannoma tumor and for my 10 day hospital stay. I cannot thank everyone (especially family) enough for all the support, care and prayers the last few weeks. We couldn't do it without the army of people who come spend their days with me, transport me to appointments, help with getting our kids off to school and activities, feed us, send encouraging cards, constantly check in with Andy and love us.There is no way anyone could go through something like this without the support of others.
Recovery seems slow for me, and I have to be patient - slow going for me is not a normal feeling. I typically enjoy independence and constant commitment to things, and this experience has put a huge pause on so many things for me. Even though recovery seems slow for me, others have been impressed with improvements. My head incisions (the full loop from my ear up around the top left of my head) are healing beautifully, as well as the skin grafting from my stomach. Here are some things that I am experiencing now:
- Yesterday I walked without a walker/someone else for the first time. It is a lot about confidence and overcoming fear.
- Attending OT & PT twice a week to seek strength and improvements.
- Showering (sitting) on my own.
- Completed a ton of medications, and now just taking seizure medication.
- Constant headaches treated with Tylenol.
- Entire left side of my head and face has no feeling - we don't know what the permanent effects will be and which will slowly improve. I have gained a little bit of feeling on the left side of my tongue.
- I am still not confident to be alone, so I require someone to stay with me during the day. This helps me feel comfortable and better about my daily functions.
- Daily couple hour naps continue to support my recovery, and I've been told they will be a constant need for quite some time.
- My balance and dizziness is a continuous challenge. As the interior of my head and brain resettle back into place, I hope for improvements in this, as this is my biggest challenge currently.
- I have been sleeping well at night, with a slight incline to prevent dizziness.
- I have double vision when I'm not covering my left eye.
- I have been switched from a patched eye to taped glasses on the left. This gives me the ability to see clearly on the right, and allow the left eye movement and light - with the hopes that it will not give up. I am to start taping my right side for about an hour each day.
- I had a terrible eye infection on the left, which looked like pink eye, but we are pretty sure it was an injury/scratching to my eye since I have no feeling. This has improved, but still has blurry vision.
- Eating is going well, I just have to eat slowly and on the right side. It is perhaps a good sign that I am feeling some pain on the left side of my jaw. I'm also slowly trying to gain weight back that has been lost.
- My memory is doing pretty well, but there are some strange things that challenge me including some names, and speaking thoughts.
- It has been 3 weeks since my surgery, and I feel like it was yesterday. I do not remember many of the days in the hospital, and time has gone so fast!
I look forward to constant improvement, even though it will require months of patience. I am so grateful to have had the medical team and knowledge that has treated me. Andy is such an amazing team mate to have alongside me and take care of us, and the girls are incredibly strong for what they also have had to experience. Life is a whole new perspective, and am so thankful for this life and the ability to continue living it.
