The first few months at home...

Well,  I finally made it home after I believe it was three to four days in the hospital.  My mind is still a bit fuzzy about the details of coming home as I mentioned earlier. I was brought home by my husband I had to lean back in the seat in the car, along with keeping my eyes shut as the sunlight was excruciatingly painful to my eyes and gave made my headache worse.  Upon coming home my sister was here to help out with many things. Which I will be forever grateful for.  My parents were also right there helping with the children and preparing meals and holding my hand; showering me with love and concern.  I had friends helping as well as sending cards, flowers, food and anything that would be helpful here to the house and I am grateful for that also!  Without their help I don't know how we would've made it through the first few days and weeks. My sister came and stayed during the day with me after the first two weeks.  My husband stayed home with me the first two weeks. Making sure that I was taking my medication properly as one is usually on a very strong drug to keep swelling down in the brain and I was also put on Keppra and Depakote which are medications for to control seizures.

As I've mentioned before I remember being very, very foggy. Kind of feeling like a space cadet, not really knowing what was going on, I wanted to just be in my bed resting and sleeping. I did watch some TV and for some reason was obsessed with wanting to pick up the phone and try to call people even though I was completely out of it. I believe my sister had to hide my phone and take it away from me LOL.

Reading was next to impossible as my eyesight was very fuzzy, my vision was not clear. I could not have the light on in my bedroom as that caused pain behind my left eye.  My husband did raise the shades in the morning to let sunlight in and so did my sister during the day. But for the most part I really wanted it dim or dark in my room for the first few weeks. I spent most of my time sleeping many people did call to check on me and did come by to visit but for the most part I was to myself and in the bed. Slowly but surely I started to get up and move around but I needed assistance to the bathroom and assistance to take a shower as I was not steady on my feet.

At the time I wasn't really able to be surprised that I wasn't more alert but when I look back on things I am surprised that I was in that condition as all the research I had done prior to my surgery did not indicate that I would be that way. Most of the people that I had seen or read up on after surgery were up talking and alert and that was not me in the least bit. 10 days after being home from surgery I developed an excruciating headache. And I had to be rushed to the nearest local hospital, which it's important to know was NOT the hospital where my surgery was originally done.  This started a crazy chain of events that will haunt me for the rest of my life.

When I arrived at the local hospital my sister and my best friend explained to the medical professionals what the issue was as I was in so much pain I was unable to really articulate what was wrong with me other than the fact that I was in excruciating pain in my head behind my eyes where the craniotomy had taken place.  To my surprise no neurology team rushed down to see me or to check on me EVER!  

What the hospital decided to do was to try to contact my neurosurgeon at the hospital where my surgery was performed and let me lay there for over several hours.  Big mistake as I am convinced to this day that I was in the middle of having a TIA or a mini stroke. I was moved to an observation area after several hours of waiting in the emergency room with nothing but pain medication being pumped into my arm. No one checked my reflexes.  No one checked to see if my pupils were dilated nothing absolutely nothing!

To this day I am very, very angry and am still considering legal action against both hospitals. One for the fact that my neurosurgeon never responded according to the hospital I was at; never responded to the repeated pages and calls to him regarding my case.  Number two that I was not transferred to my original hospital by ambulance if the hospital I was in was refusing to treat me.  For whatever reason, which I believe is partly due to the ego on the part of the doctor who heads the neurology team at that hospital, they wouldn't touch me with a ten foot pole!   

It is important to note that I sought this hospital's head neurosurgeon's opinion on my case first but decided not to use him as my surgeon.  While I was in the hospital, the local hospital, this neurosurgeon was paged over and over again to come and examine me. I overheard him talking to the nurses via walkie-talkie that he was not sending an attending down and he would not be down either to examine me either as he doesn't tend to other surgeon's work.  That was not meant for my ears.  The nurse's face was beet red and she quickly tried to turn down the volume on her communication system but it was too late I already heard what was said. 

I was kept in their observation area of the hospital, not admitted for three days only for them to basically get to the point of I just had a pain issue or was crazy or faking, despite the fact that I did have an episode of unintelligible speech in front of two visitors who witnessed it and the fact that I was talking unintelligibly for several minutes.  I followed that with not knowing what was going on or being able to answer simple questions.  I was rushed to have a CAT scan and an MRI which they claim showed no stroke. To this day there is no explanation for why after that episode I was then was unable to speak clearly and I also was not walking properly and  my gait to this day is still effected.  I walk with a cane.

After being in the local hospital for several days and receiving no treatment it was decided by myself and my family that I would just come home.  I was terrified and did not know what to do and I felt completely abandoned by the medical community. It was then that my husband demanded to speak to my neurosurgeon at the original surgery hospital and finally got a hold of him and I was checked back into Karmanos Hospital with a private room and was in there for another five days with them trying to determine what the source of this excruciating pain was in my head. The neurology team did not seem to be able to find out what the problem was exactly; if I was having some type of pain syndrome or whether I did have a stroke or not.  They even alluded to the fact to my sister and brother-in-law that I was a bit eccentric and maybe possibly there was nothing wrong with me at all. As I said I'm very, very angry about how I was treated and the physical evidence is there that something did happen and something did occur. But despite the fact of whether or not I had a TIA or mini stroke I was not treated properly as I was never seen by neurological team at the local hospital and I was never transferred to my original hospital by ambulance.  My husband actually drove me to be checked back into the original hospital where I had my surgery done and at that time I still had staples in my head & I was not even near any type of recovery. I came home after 4 to 5 days.   

After 4 to 5 days in the original operating hospital I was sent home with a pain regimen to try to keep things under control pain wise and to control some swelling that was still in the brain.  I was told to see a Neuro ophthalmologist regarding the pain behind my eye and was also referred to the pain clinic for treatment and told to see my primary care physician for follow-up. All those things were done and when my primary care physician found out what had occurred (which she should have already been notified by both hospitals that I was there) and heard all the details of my experience she was appalled along with the partners in her office.  It was very clear by the reaction of my primary care doctor and her partners that they were in agreement that something was not right and the way that I was treated was unprofessional and dangerous all-in-one.

We decided to start recording my speech and the way that I was walking. When I returned home my gait was so bad that I was literally bouncing up and down when I walked like a bouncy ball and my speech was very, very slurred it sounded as if I was drunk.  I was referred to a traumatic brain injury rehab center, where I should've been in the first place.  I mentioned in another blog that it was recommended that I be released to a rehab hospital which I was not and released to home. I spent three months going to brain rehab three times per week for speech, occupational and physical therapy.  

Therapy was very difficult!  I was very weak and I was exhausted but I was also eager to go.  I was eager to get confirmation that there really was something wrong with my speech, there really was something wrong with the way that I walked and that I wasn't crazy!  I was being treated by some of the doctors that I was seeing like I was looney and should note that does NOT include my primary care physician as I love her to pieces. If it were not for her I wouldn't even be where I am today.

In speech therapy I was diagnosed with Broca's aphasia and telegraphic speech both issues that can come up when you have brain surgery which can cause slurred speech, can cause memory issues with word retrieval problems and can cause speech distortion in general.  I had never been so happy in my life to get a diagnosis! No one wants to be ill, but at the same time when you are ill you do want to be validated in that illness and not ignored and treated as if you are crazy.  

 In physical therapy it was determined that I was suffering from definite right-sided weakness with an abnormal gate so I had to do exercises to try and strengthen the right side of my body.  The left side of my brain was operated on and as we know the opposite sides of the brain control opposite sides of the body so having being operated on the left side that controls my right side which was weak. Exercises were created for me.  I began physical therapy walking with a walker as I needed extra support. I then progressed to being able to use a cane I was trained to walk up and down stairs with the cane and how to navigate around using the cane to support myself.  

Occupational therapy was very interesting as I really didn't think that I needed that but I did.  They were giving me exercises such as cooking; one day I had to cook a full meal another day I had to go to the store and follow  a recipe list and grocery shop, find all the items on the list and it was exhausting and a lot more confusing than I thought. I did not like being in big wide-open spaces such as the grocery store it made me very nervous. 

So, all of the aforementioned problems were worked on in therapy and I was finally released after three months of three day a week 3 hour sessions. I was also referred to reading therapy as I did have some vision loss and still do have some vision loss on the left side which effects my peripheral vision.

Now began my new life. Little did I know that I was going to be on a journey of a lifetime. A scary, lonely journey. I must say that I was surrounded with and still am with tons of support, friendship, love and care from my family and friends and I am very, very thankful for that!  However there were and are parts of this journey that unfortunately cannot include family members and friends.  I have to walk with GOD and listen!