Removal of Marks brain tumor my diary
Before you read this story, I need you to understand that one of the biggest reasons I am here today is my wife. Cindy has been my rock through this entire ordeal. She has been the one that has had to deal with all my issues with this surgery and the healing process after. As well as help me cope with news from the doctors at every step. Of course there have been very difficult times for the both of us with the different news we have received, but also in dealing with four wonderful boys throughout the healing process. I love you Cindy.
My family has been there for me each and every step of the way. I love you all for your support through all of this.
Most of what you will read is as best as I can remember it. My hope is that one day Cindy will go back and fill in what she can recall from the days after the surgery to the months that followed as I do not have a lot of memories from this time.
October 5th I went to the ENT to find out the results of my CT Scan. Dr. Gwinn informed me that the results showed that I had a growth in my head. This growth had nothing to do with my sinus issues. The growth was estimated to be the size of the top of my finger. He asked me to get a MRI to verify it. The growth was listed as a meningioma and I was referred to Dr Olsen.
After leaving Dr. Gwinns office, I called Cindy and my brother Anthony. Anthony told me he would contact someone regarding the MRI and they would get me an appointment. Cindy took the rest of the day off, to come home to be with me. She took it very hard. Although we were unsure of what to expect, I suppose human nature is to expect the worst.
The MRI place called within 30 minutes and set me up with an appointment for Wed Oct 7th. I got back to work and told Adam what was going on. I broke down at that point. He let me go home.
October 7th I went in for the MRI, they performed it both with and without contrast. They gave me a CD to take home and bring to the doctor.
The following images show the tumor in my head:
The size was listed as a size of a golf ball.
I sent the images over to Anthony, he showed them to Dr. Ranganathan. He referred me over to Dr. Barrett. I called Dr. Barrett and setup an appointment for Oct 19th.
Oct 19th Cindy and I went to see Dr Barrett, and he confirmed that the tumor had all the markings and signs of a meningioma. He suggested a craniotomy. That means shaving my head from left to right and cutting my skull open to remove the tumor. We asked about other surgeries, and he said at my age there would be no reason to use radiation. Plus they would not be able to perform a biopsy to verify if this was benign. So we scheduled the surgery for Nov 16th.
Oct 26th Doctors appointment with Dr. Olsen for a second opinion. I met with his assistant as he was out sick. She answered more questions, but also said that either option would be ok for me, Surgery or Radiation. She also confirmed that this was something that did not need to happen right away, but at my age would not be a bad option. She was going to have Dr. Olsen call me to review the MRI with me as well.
Oct 28th Dr Olsen called to review the MRI with me, and agrees that the surgery would not be a bad thing. That the radiation would also not be able to verify one way or another if it was benign, although they are 90% sure that it is a meningioma. He said that I should be able to heal at my age without major complications.
I called Dr. Barretts office to confirm the surgery date for Nov 16th.
Nov 10th St Johns Macomb called and asked me to come in for a pre-op appointment on the 12th to pre-register and get blood work.
Nov 12th I went in to St Johns Macomb Warren, on 12 and Hoover for my pre-op appointment. The informed me that I was to be at the hospital on the 16th at 6:45 am for my MRI at 7:15 am and surgery time would be at 9:45 with pre-op beginning at 7:45
Nov 15th Cindy and I shaved my head down, not with a razor but very short as you can see in the image. I was not nervous at all. I had prepared myself for whatever happens.
I had a good week with all the boys. I showed my head off to them and joked with them. I do remember feeling that I was most likely not going to make it out of the surgery.
Nov 16th We arrived at the hospital at 6:45 and Cindy and I went to the area where they do the MRIs. They brought me back and attached little circles all over my head to use as guides for the procedure.
After the MRI was performed I was taken with Cindy to the waiting room before going in for pre-op. After a few minutes we were taken back. This is all I remember before the surgery. Cindy will need to fill in the rest.
Nov 17th I was in ICU, I had a lot of difficulty staying focused and talking. The pain was very intense and I used a lot of ice bags for my head. I remember Cindy being there, along with mom and dad, and John and Brenda stopped in. I do not remember anymore than this.
Nov 18th I was moved from ICU to a regular room. I believe this was the first day that I can remember walking. I think they removed two of my three IVs and also my catheter. I was able to walk and go to the bathroom. I still did not eat but a couple pieces of toast. I started drinking a lot ginger ale, it just tasted really good to me. I know Ken and Sue stopped in. My Dad was there and so was Mom. Anthony stopped in. I do not remember anything that was talked about. I think I watched some of the hockey game, I do remember the 4 TV that they had in the room. I am not sure. I had my first real food today. I had a salad from Hungry Howies.
Nov 19th I remember Cindy and her boss Pam being there most of the day. I still struggled with words and I was very spacey. I was not able to speak clearly. I went to the bathroom a lot. I had toast and orange sherbet. I think Dad and mom stopped up as well. Cindy will have to confirm this. My Bandages were removed today. And we had our first look at the cut and staples. I have been in and out of things for the entire time since my surgery.
Nov 20th Dr Barrett, Dr ONeil came to see me. I also went down to the MRI station. I had another MRI taken. Dr. Barrett reviewed the MRI from another hospital and said that I was cleared to go home. I am still unable to complete a lot of sentences. Words are at a loss to me. I struggle with focus and communication. I can also hear the blood in my head sloshing around. It is the most indescribable, nasty feeling.
I was released from the hospital. I know Cindy was there, and I believe my mom was too. Cindy brought me home; I know it was about a little after 4 in the afternoon when I got home. My mom, John and Vinny were waiting for me at the house. I was able to spend about 20 minutes with the boys. I remember both of them giving me hugs. Vinny was very timid to be next to me, he just kind of stared at my head. He did come up to me though. After the boys left, I took some Tylenol. I took a nap. I do remember that I could feel my brain moving in my head and the blood sloshing around in my head. The cut itself was sore to the touch and my head really itched. I kept trying to rub it; however there was no feeling around the cut. I took a long shower and Cindy washed my head around the cut. And that is about all I remember from Friday after I got home.
Nov 21st My head was still very itchy. I could still feel the blood sloshing around in my head. My headaches, other than the pain are gone. Although, I still cannot communicate to well. I am also having great difficulty writing. I am struggling and have to think about each letter and force my hand to be able to write it. The letter M is very hard. I cannot sign my name at all.
Most of this month has been the same. I continue everyday to try and write. It is getting a little easier. Typing this is ok, not that difficult. Cindy and I discussed changing the Christmas tree around this year, from the Hallmark ornaments to Christmas bulbs. I also started driving again. I am taking this very slow. Everything on the road seems to be coming at me very fast and the reaction time I feel is very slow. On one of my trips out, I went to visit the people at work. I move very slow still. I can also still feel the blood sloshing in my head. I cannot wait for this feeling to stop. Headaches are still not there, so that is a good thing. Although any loud noises can cause me a lot of pain, especially noises from behind me. I continue to have a hard time in conversations. I repeat myself a lot. I ask the same questions over and over. In time this should get better.
I feel like I cannot remember a lot of what has happened to me over the past month. There are a lot of blank spots. I built a LEGO set; the set took me over a week. I do not remember building it. I have pictures that tell me when I started and when I finished. I hope this memory issue goes away.
I started back to work. I am not working a lot of hours yet. Still at about 30 or so, depending on how I feel each day. I feel at times that I am overdoing it and then I need to leave. I am still very slow with words and also writing. It has come back some, but not completely. One major change for me at work is my memory. I have gone to several meetings at work and I cannot remember or stay focused on the meeting. I am starting to learn how to take notes.
I met with my Neurologist to discuss the memory issues I am still having. He asked that I have an EEG test. Then we would discuss the results.
Getting the EEG
The results of the EEG were as follows. No seizure activity, however there is slowing of the left medial region. Abnormal results. Recommend getting an MRI to see if there is Scar tissue or possible re-growth.
Results of the MRI. As you can see the tumor in Oct 2009, I was completely clear of any growths in March of 2010. In the latest scans you can see either scar tissue or new growth. Will have another MRI in Feb. 2011
If you are not sure what you are looking at. The highlighted spot in the 2009 MRI is the tumor. In March there are no highlighted spots. In the new scan you can see the highlighted spot, about a quarter of the size of the tumor that was there. It is in the same spot and my surgeon did explain to Cindy and I before the surgery, that there was a chance of re-growth. Being that they were able to remove the tumor completely, they are not able to determine if there are cells that are still growing. This is the reason for the follow up MRIs. My surgeon believes that this is scar tissue. However, he cannot explain why the scar tissue does not show in the March scan, some 5 months after the surgery.
Well it is going on a year. I have gone back to the doctors and have had a few checkups. In my last MRI we found that there is something there again. My surgeon has not determined if this is scar tissue or if there is something growing again. We have scheduled another MRI in Feb. If the size of the mass has grown, we will know that we will need to take other steps. If not then with any hope it is just scar tissue. My headaches have come back over the past few months. Not nearly as bad or as often but I am getting them again. I have been told that my temper has come back and I need to keep trying to control it. I am not sure why this is happening. Also, my memory, I am still having major issues. I cannot remember most of this year. There is no rhyme or reason as to why I cannot remember it or what I can remember. We went on vacation last month to Florida, while there we went to Universal. I took a few rides with the kids. I have come to realize, that with this surgery my riding days are probably over. On one of the rides I felt like my head was going to explode. It hurt very bad and I had a hard time walking afterwards. I was not feeling sick, just no balance.
Things at work are ok. I am able to take good notes, now that I know how to, and I can remember a lot of things that way.
All in all, I am able to function on a daily basis. My headaches are back but not as bad. I still struggle with driving a night. Things move very fast when on a two lane road with all the lights. I am still having a lot of memory issues. I continue each day to try and control my frustrations. I can say that I am on the right side of the dirt, and that I am keeping a positive feeling. I still struggle mightily with keeping concentration. I continue to read books, although I do not remember them and it is hard to stay focused while reading.
It is a very different life to live when you cannot remember. To have people tell you that you did this or that through the year and you cannot remember. It is very difficult. This is me today. I keep my hair short, it doesnt itch as much, although I do continue to rub my head all the time. This is Cindy and I at our godsons baptism last month. I do not remember going there. L
Cindy and I have been visiting several doctors this month. I have decided to visit a new neurologist as I have lost all confidence in Thomas O'Niel. He has provided me with no help what so ever. I have started seeing Dr Kaner. In the first meeting with him, he spent more time with me talking and doing tests then O'Niel spent in the year plus since my surgery. He also had me seekout Dr V to have a physc test done to confirm his suspicion that I was suffering from PTSD, which can be caused by closed head injuries or brian surgeries. I have also had my followup MRI. My results from the MRI have confirmed that there is no NEW growth and I have been cleared for 1 year before my next MRI.
Cindy and I go back to meet with Dr V to find out the results of my test in a week, then follow up with Dr Kaner to see if his diagnosis was correct. If it is, we will be able to treat this with some medicine. I will have more to write at that time.
As for my memories, they are spotty at best. Some memories have started to come back, but there is still no reason as to which I am able to recall. Meaningful things like Christmas time and the holidays I cannot remember. My Vacation in October is a blank and I do not remember what we did, other than what I see in pictures. Thankfully I have taken a lot of pictures and it does help to recall some things.
Cindy and I took our anual trip to New York over valentine's day, and it was a very nice trip, although it was shortened this year due to costs. We were able to take in two Broadway shows, Spiderman and The Addams Family. Next time I write to update the findings, I will be able to see if I can remember the plays at all. Check back in a couple of weeks for the updates from the Doctors.
After numerous tests the Dr has prescribed me ambien for sleeping. It has worked very well, I can get to sleep within a half an hour after taking the medicine. I am better rested and able to function during the day much better. If I do not take the medicine I still have a hard time sleeping. After being on this medicine for two weeks, I still find that keeping focus is very difficult. I met with the doctor and discussed this. I have also been prescribed Adderall (an ADD med) to help with the focus. I have noticed slight improvement over the three days that I have started taking it. However I was forced to stop taking the medication as other health issues have arisen. I will be able to start taking it after I gain my health back.