Brain Surgery, not what I expected…

Brain Surgery, not what I expected…

November 4, 2016 came around and I was in the hospital at 5:30 a.m. getting prepared for my craniotomy to remove the AVM in the left temporal lobe of my brain.  The surgery was scheduled to start at 7:30.

Needless to say I was very nervous, but having family around, I felt the need to keep my happy, positive attitude up to keep everyone else from being upset.  In case something bad would happen I wanted to make sure the last thoughts of me were smiling and having a good time with everyone.

They got me moved into the operating room and they started to get things ready.  The anesthesiologist explained what he would be doing and asked me if i had any anxiety.  Of course I did.  I knew they would be putting me to sleep for a bit to get me ready for the angiogram and craniotomy, but they would also be waking me up so they could test my speech.  Having the AVM in the left temporal lobe area meant my speech could be affected and if they found any problems during surgery they would stop everything and instead of removing the AVM they would look into a type of radiation to slowly make the AVM close up and disolve.

If you have ever had any sort of awake surgery, you don’t usually remember much of it because of the drugs used.  I don’t remember them talking to me during the surgery, but I have read some of the notes from the surgeon on my chart and I have a CD with images of the angiogram done during surgery to close off the AVM before it was removed.  I only have four specific memories of the surgery itself:

  • The first was hearing something like a saw or drill and having major pain in the left side of my head.  I believe this was when they were opening my skull.  I cried out and after a short time of that the surgeon asked me if I was in pain.  I answered “Yes”.  I heard him say let’s take a few minutes, which I assume they gave me some more medication to put me out a bit more.
  • My second memory was feeling pain in my head.  I’ve had an angiogram for the stent in my heart and I remember this same pain.  I made some noise and the my surgeon calmed me down and told me this would be the last one and it wouldn’t hurt anymore.
  • Memory number three was a little scary.  I started feeling nauseous and I started to gag and cough like I was going to vomit.  My surgeon asked me if I was feeling sick and I remember answering “Yes”.  I started gagging more and, since my face was under one of those blue drapes they use in hospitals, I heard my surgeon telling others to check on my.  The gagging and coughing caused pressure in my brain, which was now open because it was being worked on, and caused a bleed in a vein attached to the AVM and some swelling and protrusion of the brain.  I remember a bit of concern in my surgeon’s voice that they needed to work on this.
  • The last memory I have was being wheeled out of the operating room.  I think I asked my surgeon if they got everything out OK.  He told me they did.

When you watch Grey’s Anatomy, a brain surgery happens and everything is all right afterward.  The patients are talking and happy like they had just taken a nap and were ready to head home later.  In truth it was nothing like that.  I was a bit confused, I had issues with words, I couldn’t read and I was pretty exhausted.

It’s been a full year now and I still think back to my hospital stay.  It scares me a bit when I remember the surgery itself.  I remember laying in the hospital bed later, wanting to say the things that used to come so easily to me, that were not there.  I remember looking at my phone, at the cards from family, at the breakfast menu and not being able to make sense of any of the words on them.  There was some panic in my part that I had made the worst choice ever because I was never going to be able to communicate again.  Well, most of that has come back, although I still have some issues.  Large groups are difficult for me, too much noise is overwhelming, people that talk to fast are so hard to follow and the phone is no longer my friend.  Seizures have continued to plague me over the last months, but the hope is they will stop over time.

If anything, this has taught me to never take things for granted.

Losing a close friend

Losing a close friend

Cousins

 

My blog is supposed to be about me dealing with my recovery from brain surgery.  I’m trying to come up with things, but continue to get stuck.  I am scrapping my brain injury today simply because I am having a really difficult time with the loss of my cousin last week.  It was sudden and very unexpected, so I’m still at a loss.

We are one year apart in age and basically grew up together.  We lived in different towns, but were close enough that we got together all the time.  We worked at three different jobs together, went out on weekends, were in each others weddings and our kids even get along.

I think I always assumed as we lost our older relatives we would carry on with the traditions of getting together for holidays and keep our families close.  She was the one that was into planning and making sure everyone was involved.  I don’t know how to go about doing those things now.

She was that person that was involved in her community, her church, her kids schools activities.  It was obvious she was respected and cared for because of the turnout for her funeral.  I’m not sure if there was an empty seat or a dry eye in her church.

I know everyone has a person like this they are close to, but this is my time to grieve for the one person I expected to be there until we were old and gray.  To my cousin and friend, I hope I can pick up where you have left off and make the world look a little better like you always managed to do.

Gratitude – To those that have kept me here…

Gratitude – To those that have kept me here…

via Daily Prompt: Gratitude

When you have health problems, you realize you need help.  It comes from doctors, nurses, hospital staff, family and friends.  Some problems are easily taken care of, but there are others that never go a way.  This is when gratitude comes along.

I had open heart surgery in 2001 along with an angiogram to put in a stent and then I had brain surgery in 2016, so I have seen doctors for years.  It’s never fun, it doesn’t always feel good, but I wouldn’t be here if they didn’t take care of me.  I can’t count the number of doctors, nurses, EMT’s and hospital staff I have seen over the years.  They often don’t know me, but they do their best to make sure I am well and I will always be thankful to each and every one of them.

My friends and family have kept my spirits up, given me rides when I can’t drive, sent me gifts and cards, and have just kept me sane through things I would rather not always deal with.  Some of them put up with my crappy attitude when I have a bad day and never give me a hard time about it.  They will always have my gratitude.

I’ve learned that life is short and everyone deserves your attention if they are willing to give you a hand. Many people don’t show gratitude when they should.  They just want things and expect them with no thanks given.  I sometimes wonder if they have ever seen the side of life that isn’t easy.

Gratitude – I will always show it to others.

Where to start…

Where to start…

I just keep thinking about what I want to say and make this to be about.  My AVM was discovered a year ago and my craniotomy was done in November 2016.  So, I have been through so many different things over that time.  I jump between starting at day one and giving all of the good, bad, and ugly things up until now.  At the same time, I want to start with where I am now because now is when I seem to be struggling the most.  My brain is part of that problem.  I have trouble focusing sometimes and if I don’t write down the thoughts I have on my mind I tend to forget them when I do decide to write a post.

So, maybe I will start with today and go back as I feel like it.  A craniotomy isn’t a fun thing especially when it involves the speech area.  I still have problems every day.  I’m working, but I’m not happy working.  I do it because I have to pay my bills and keep my health insurance.  It’s hard when I look exactly how like looked a year ago, but my mind doesn’t function the way it did then.  People that don’t know me and even those that do know me don’t really understand the difficulty I have.  I’m an accountant, I prepare the financial reports for the company that I work for.  It was tough when I first went back to work two and a half months after my surgery because I actually had to re-remember things that I could do in my sleep before.  It was overwhelming and it still is today.  I find little things that I still forget how to do and try to avoid questions from co-workers because it is just too much sometimes.  I tell people to email rather than call so I can make sure I understand what they are asking me and I can put together a full response that makes sense.  I’m in a tough position because some jobs may be eliminated where I work and I can’t help but worry that mine will be one of them.  I can’t blame my employer if they go that way because I’m not the person that can just jump in and cover all the bases.  On the other side I need them to keep me because I feel that I won’t be able to find another job.  My mind is in there, it is just not as sharp and quick as it used to be.  Who will want to hire a person that takes too long to learn things, can’t make sense in conversations or answer phone calls.  I stress over this every day.

I guess in writing this it makes me really want to make others understand what a brain injury is like.  Like I said before, I look like me.  People that meet me for the first time would not know that I had brain surgery.  They probably just think I’m a little weird if I simply smile or defer to someone else to do the talking or say “what” multiple times because I couldn’t follow the whole conversation.  I feel like I need to tell every person I talk to that I had brain surgery, and I won’t always say the right thing or that I can’t always remember the word in that sentence.  I don’t want to have to tell everyone, but I want them to understand why I am the way I am.  On many days I want that shaved head back so I don’t have to tell people why I have to leave a room if there is too much noise going on.

My life today is not different from it was last year, but it is more difficult.  I have to pay attention to my body, turn down the noise around me, avoid all the stress going on(so far the hardest thing of all) and get help when I need it.  I’ve been considering making this a private journal for myself, but I guess if anyone reads this and understands or finds some help I would consider it a success.  We’ll see how it goes anyway.  Feel free to ask or comment on anything.  Thanks.

Arteriovenous Malformation(AVM), what is it?

Arteriovenous Malformation(AVM), what is it?

A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain.

The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process.

An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Even so, brain AVMs are rare and affect less than 1 percent of the population.

The cause of AVMs is not clear. Most people are born with them, but they can occasionally form later in life. They are rarely passed down among families genetically.

Some people with brain AVMs experience signs and symptoms, such as headache or seizures. AVMs are commonly found after a brain scan for another health issue or after the blood vessels rupture and cause bleeding in the brain (hemorrhage).

Once diagnosed, a brain AVM can often be treated successfully to prevent complications, such as brain damage or stroke.

AVM’s are considered to be congenital and are rarely passed down through families, with the exception of Hereditary Hemorrhagic Telangiectasia (HHT).  I am not familiar with HHT, but plan to look into it more and share what I can on it.
An AVM can happen anywhere in the body where arteries and veins come together.  The way it was explained to me, there should be capillaries between the arteries and veins, but in an AVM the cappillaries do not form.  This ends up causing a tangled mess of arteries and veins.  They are often in the brain or spine, but can also be throughout limbs of the body.  My AVM was located in the left temporal lobe of the brain.  A scary thing for me because that area deals with speech.
Finding an AVM can happen in different ways.  Some people will go their entire life and never know there was an AVM and my come to light only in an autopsy.  There are symptoms like headaches and seizures.  They can be found when the blood vessels reach the point that they rupture.  Some people find theirs when having testing done for other injuries that have nothing to do with an AVM.  They can be found at any time in life from children to elderly people.  I began having seizures and through testing my AVM was finally found through an MRI.  I’ve met people online that found out about their AVM after waking up from surgery because of a rupture.  Everyone goes through their own journey, but it all comes back to having and AVM somewhere in their body.
This is a quick overview of an arteriovenous malformation(AVM).  Please feel free to leave any comments or ask questions.  Thanks for reading.
Hello and Why I Am Here…

Hello and Why I Am Here…

Hello to anyone out there that gives this a read.  If you have ever had a “rare disease” you  might find yourself in the same position I am in.  Everyone understands what cancer is, what a heart attack or stroke means, it’s easy to know that someone has broken a leg when they have a cast on.  I tell people I had brain surgery because I had an AVM in my left temporal lobe and I get a lot of blank stares and comments about how good I look now.  I do look good, you would never know there was anything wrong with me and that’s because my damage is literally all in my head.

My surgery was nearly a year ago now, but I still have some lingering affects and I really don’t know if they will ever go away.  The brain is an amazing thing, but when it doesn’t work the way it used to, life becomes a struggle.  I have issues at times with my short-term memory, problems with noise, having conversations with people, both in person and especially on the phone, can be a challenge.  Seizures are still happening.  Anxiety was a bit of a problem for me prior to my surgery, but now it has really kicked in and I believe there is a some depression as well.

So, I started this blog to share what an AVM(Arteriovenous Malformation) is and what I have been through since it was found and removed.  I jumped in full force a few weeks ago with posts and after reading them, they didn’t make enough sense to me, so they were removed and I am starting over new.  I hope to give you some information on AVM’s, who has them, where they come from, how people live with them.  I also want to share my story, what it’s like to have brain surgery, any brain injury really, and how life can change.

I am open to comments and questions along the way, so feel free.  Thanks for your time.