News that you have a brain tumor can be shocking. Especially when the symptoms are mild. Upon founding out I had a skull based tumor, my family and I went on a quest to seek to understand everything possible. What to expect, who will be involved, how was it going to impact life, and when it was all going to happen. We wanted to go into the surgery as educated as we could be.
An interesting thing about tumors that are located on the brainstem is that they have their own particularities. One of which is they can encompass crucial nerves such as the vagus nerve and others that supply our bodies the ability to function. In some cases such as mine, the most crucial cranial nerves can be wrapped up inside the tumor making it difficult to remove completely, leaving some inoperable. This type of tumor is called a complex skull based tumor. Here's a few things I learned after the surgery, that I wanted to share.
1. 30% chance of losing some functionality, means you should plan on losing something.
When I first heard that I had a 30% chance of losing my voice, ability to swallow and that my balance, vision and hearing would be impaired. I thought Oh! so it's not likely. I buried it in the back of my mind as though the chances were so low I'm not going to worry about it. In hindsight, I would have done a bit more research on each. In the chance it would be an issue to be more prepared on what to expect. Avoiding any surprises or unexpected learning curves. After surgery, I had the enjoyment of discovering how to manage all the complications. I will share more about this in another post.
2. Not all Neurosurgeons shave your head.
It's up to the preference of the Neurosurgeon if they shave the area for the incision. In my case, they did not shave, instead they put a type of wax or glue along the hairline where they were making an incision. It's my understanding this was to prevent infection that shaving could cause. After surgery, this wasn't the easiest to clean out of my hair. We were told to use baby shampoo. It took several attempts over several weeks, some hair was pulled out in the process. 6 months after surgery, the scar is barely noticeable and the hair is growing back.
3. Your skull won't be the same shape.
This part I have to sit back and laugh. I will forever have a lump on the side of my head and my ear on the right side is a teeny bit lower than the left. I don't mind the way it looks. It makes me smile when I see my reflection. As after my facial paralysis improves it will be the only thing that is visible from my craniotomy. A little reminder that you are a bit altered but a functioning human being after undergoing a pretty intense surgery.
4. In a 16 hour surgery ( or any lengthy surgery) your neurosurgeon only steps in for his portion.
How did I not know this before? I guess I always wondered how surgeons can stay awake for these grueling surgeries that take 10-18 hours. Mine surgery was estimated 10-14 hours, it ended up being 16 hours. I was a bit worried going into the craniotomy that he would get tired. I didn't want him sleepy while working on my brain. I mean, that is a valid and scary thought. So I asked the question. That's when they explained the neurosurgeon only performs his portion. There is a team of medical professionals that handles each step of the surgery. A vascular team, an ENT doctor and others. They hand off the surgery similar to runners in a relay race. When their part is over they hand over the baton. I still give a huge level of gratitude for each person that worked on me. My neurosurgeon didn't get off easy either, as he worked on my partial tumor extraction for over 6 hours. He shared with me that he specializes in complex skull based brain tumors, and ranked mine in the top 3 hardest he has done. Considering he does over 400 surgeries a year and has been doing this for very long time. That's saying something. We spoke with other surgeons and my tumor wasn't one that many would attempt to remove. So I will always be very grateful for his expertise and that I'm on a path for full recovery from the unavoidable nerve damage caused by working next to the cranial nerves.
5. Having your blood vessels cauterized can reduce bleeding during surgery and make the removal easier.
This was one of the many reasons why I chose our neurosurgeon. During our first visit he shared his plan to try and safely remove the tumor that was putting pressure on my brain stem. He shared that he would scheduled a vascular team to cauterize any blood vessels feeding the tumor the day before the surgery. This procedure if they are able to do it, can shrink the tumor and make it easier to extract. It also reduces the amount of bleeding during the surgery which helps the surgeon and you. Partial blood vessels were cauterized in my procedure. I think of it as the ones that weren't important. My jugular and other important blood vessels that run through the tumor were left untouched. Can I say one more time how thankful I am to that entire medical team? They literally saved my life.
6. There is a specialist (or two or three) for every cranial nerve affected.
Again, how did I not realize this before? As cranial nerves 6-12 were affected. There is a specialists/doctor for each. In some cases two or three. How this looks after surgery, is managing multiple doctor visits. There were weeks where we had 10-14 different appointments in one week. We thought we had planned for everything, so this was a big surprise. Not to mention working with insurance and cost for care. Here are a few of the specialist you should expect to see.
For Facial Palsy there is a facial neurologist and facial/speech therapists
For throat and inability to talk or swallow there is a ENT (ear, nose and throat doctor) and a specialist for vocal cords and a swallow therapist
Digestive team for feeding tube, and a dietitian for liquid formulas to ensure proper nutrition intake.
For double vision an optometrist and ophthalmologists and a plastic surgeon ( if needed) that specializes in inserting gold weights or other options to treat not being able to close an eye.
7. Recovery, specifically nerve recovery really does take a very long time.
I have read that some patients after a craniotomy are able to bounce back to their regular lives in just a few months after surgery. I thought the same for me. What I found is that nerves are slow growing. They grow 1mm per month. A damaged nerve in the back of your head can take an entire year or longer before it reaches your face. Average nerve recovery can take 9 to 12 months before showing improvement. This depends on the patient's age, health and level of nerve damage. In some cases, the nerve never repairs. It's completely different for every human. The waiting can seem long and be the toughest part sometimes. So many others have shared you have to give your self time to heal. I've learned to be still and let things come back when they are ready. I've also learned to adapt if they don't. This took time but living in my body for the last 6 months. I've learned to cut it some slack.
8. Find peace in knowing everyone's journey is different.
Have you ever heard someone say "you just don't know what it's like"? No one but you will know how it feels. The best tip I can share, is stop expecting someone else to understand. They have their own journey. Let them manage theirs and find peace in accepting yours. I've read posts from people in recovery being upset with their spouse, kids and friends. They claim no one understands. Those feelings are valid, however it's best not to expect others to understand what you are going through. Watching my family and friends cope with my news of my diagnosis, made me realize. It's a lot harder on them, then me. Their worry and fear outweighs mine at times. I find my peace by putting them at ease, sharing humor and finding ways to show "I got this" is energy better spent. I want them to hear it in my voice and see it in my face that "I'm ok", I'd rather find time to spend with them doing and talking about anything else, other than feeling sorry. I would rather do something that takes my mind off it. Try it, hopefully you will find it helps as I do.
9. You will sleep 20 to 22 hours each day.
I pretty much slept through all of September 2022, part of October and most of February 2023. I spoke to someone that had gone through a similar surgery a few months before me. They shared I would sleep 22 hours each day. To be honest, I thought that was more isolated to their recovery. I couldn't imagine sleeping that much. I've had surgeries before. That wasn't an issue. Brain surgery is different. It's your brain. It controls every aspect of your body. When it's healing, you are sleeping. There is no question about it. Your body will sit your bum down and make you rest. Energy will come back in waves. Learning to know how to spend energy can be the best investment during recovery. Understanding what depletes energy and how much rest is needed to gain it back.
10. Recovery is not a steady improvement. It's more of a bumpy road.
Buckle up, it's going to be a bumpy ride. There were days I felt a burst of energy. The kind of day that makes you feel the hard part is over. Then, the little set backs kick in and bring reality back that you are still recovering and it will take time. It's a process. Trust the body, know it will have good days and bad days. My remedy is to be as present as I can while I have the energy to be. Walk everyday, even when I don't want to. I learned to departmentalize the difference between physically not being able and mentally telling myself I'm not able. Our minds are powerful and can accomplish extraordinary things. On my toughest days when all seemed impossible, I gave it time.
Time is our greatest gift, choose wisely how you spend it.
Written by Kimberly Adams Tremper, March 9, 2023