Yesterday was one week since I had my brain surgery. I have a support group for chiari malformation and I have to tell you I was freaked out. I wasn't nervous 100% about the surgery, I was more nervous for the healing after the surgery. Tatiana and Eric were also nervous for the healing after the surgery. Nervous that I was going to have issues like some of the people did in my support group. My head (and my families' heads) were spinning about what could go wrong because there really weren't a lot of success stories. My doctor said I had to remain in an upright position for 6 weeks. No bending, twisting, grunting, straining. No lifting anything over 10 pounds, no jumping, no running. No grocery shopping, no chores, no cleaning, no laundry, no cooking. No sneezing or coughing. So, with all those NO's and the stories from people in my support group I can understand why we are all nervous about me healing. What were some of the stories we heard from my support group?
Some had a CSF Leak
Some had CSF fluid pocket
Some had eyes dialated and sensitivity with light
Many (about 90%) said they were nauseous
Many said they couldn't walk by themselves and had to use a walker to get around
Many said they had blurry vision
Many had a swollen face
Many had swollen eyes
Many had parts of their face black and blue
Many said they had major pain and they couldn't manage the pain with the medicine they were given
Many said they were dizzy
Many said they had issues using the bathroom
Many said they needed a shunt put in to remove excess liquid buildup (this still might happen).
Many ended up having an infection at their scar site
Many couldn't turn their head
Many had to have physical therapy afterwards (this still might happen)
So, as you can see why I was nervous about the healing. If I did anything wrong, any of these things could happen to me. I had to listen to my doctor and nurses in the hospital to make sure I didn't have any bad side effects. I didn't want anything bad to happen. I have been sick and sore for so long, I just didn't want to go through anymore pain. There were people after people that had a hard time, it seemed like nobody had a good surgery, but they all said they would do it again because the surgery in the long run helped them.
We planned and prepared. We have Eric's parents here helping, I cooked 30 freezer meals for dinner and several lunch options. We were ready for the worst..... I mean after all, it isn't like we haven't had bad things happen in our life for us not to think the worst isn't going to happen.
So let me tell you my days leading up to today
Morning of Surgery:
I remember the anesthesiologist saying she was going to give me some relaxation medicine. Eric said during this time I was talking, smiling and laughing. Eric said he kissed me goodbye. I don't remember kissing Eric goodbye. What I remember was waking up in a room to someone tapping my shoulder saying "Thea. Thea." I looked around and I wasn't in the room I was in before. Eric wasn't next to me. I was very confused. I looked around for Eric and couldn't find him. The nurse then said, "Surgery is over. You did good." LOL I don't remember leaving the room or saying goodbye to Eric.
Afternoon of Surgery:
After surgery Eric did eventually make it into the room. I was lucky, the hospital just opened up the visitor policy to allow one person in the room, but nobody under the age of 18 was allowed. So, no Tatiana. They continued to give me muscle relaxers and pain pills through the IV. Every time the nurses came in they asked if I needed anything for pain. They were ready to pain med me up. It's interesting, the doctor said I could be nauseous and really tired after the anesthesia, I wasn't. I was awake and talking to Eric. Didn't become nauseous at all. I felt good, I had pain, but it wasn't anything that the nurses weren't able to manage with the muscle relaxers or pain pills.
Night of Surgery:
Well I knew it was too good to be true. PAIN! I have had pain that has brought me to tears before, but that night while I was sleeping my neck locked up! Now, remember I'm not supposed to twist, so my body was literally stuck in bed. I wanted to move, but I couldn't! I wanted to call the nurses to help me sit up, but the nurse beeper was on the other side of the bed. I was stuck! I was in complete pain! During the entire day they kept asking what my pain level was..... It was always a 4. Right at that time it was a 10!
See, I'm pretty tough and have a high pain tolerance. I broke my hand and laughed. Not until my hand turned purple did I go to the hospital, 12 hours later. I burned my left hand with boiling sugar (320°) and drove myself to the ER. I have a high pain tolerance, but this pain was unmanageable! Somehow, I had to figure out how to move my body over just enough to get the nurse beeper. It was going to hurt and I was just going to have to deal with it.
Finally, after 15 minutes of being in pain and helpless, I was able to ding the nurse. She came in and asked what was wrong. I told her and she tried to help on her own. She then realized that she couldn't and she called another nurse to help me. The two nurses grabbed the blankets from underneath me and lifted me up. I was in tears! I hurt! Through this entire time of helping me sit up I was crying and saying "I am so sorry. This isn't like me." When the nurses left the room, I heard them say "She just had brain surgery and is apologizing for hurting." I have cried from pain before, but not pain where I felt stuck and couldn't work my way through the pain.
Thursday Morning:
Thursday Morning, day after surgery my doctor came to visit and tell me about how the surgery went! He said he wished he had a camera or students in the room, because the surgery was a text book chiari malformation surgery! He was SO excited about it! He explained that when he opened up my head, the cerebellum was completely squished. there was no pumping at all. The minute he released the muscles and did what he needed to with the skull the cerebellum started pumping to the beat of my heart. It was just text book perfect! He literally was so excited, it made me super excited. For a neurosurgeon to get that excited about his surgery, you know it was good. Going into the surgery I had a 30-90% chance of this working. With my diabetes they just didn't know what was damage from my diabetes and what was damage from my chiari..... Well, my surgeon said after seeing my brain and my results he knows my outcome is going to be just amazing!!! Holy smokes! He made me excited because of how excited he was! This was good! This was really good!
During the day I did have some ups and downs, but thankfully my surgeon and my surgeons nurse practitioner were on top of the issues. First, they were supposed to have my CT scan done right away in the morning, before 6:00am. They never did it and my surgeon was very disappointed. He called and made sure it was done ASAP. Second, they gave me a lunch I couldn't eat. With my diabetes and gastroparesis I am on a very restricted diet. Well, when my nurse practitioner came in, she saw I was eating and apologized for coming in during lunch. I explained to her it was ok, I was done eating because this food wasn't gastroparesis friendly. She asked what I could eat and had the nurses order me chicken and mashed potatoes..... Of course when the food came it was mashed potatoes and beef steak, another thing that I couldn't' eat. Thank goodness for great doctors!
Friday:
My surgeon came in at 6:30am and said my CT scan looked great! That I was going home that day! He commented again about how text book perfect this surgery was and what a great patient I was. I was healing beautifully and he was just so excited to see my outcome now that he knows exactly where my chiari was and how different my body is going to react. He asked my pain level and I told him maybe a 2. Once he left I called Eric to pick me up. I was discharged from the hospital at 9:45am. Eric drove me home and I got to see my daughter for the first time in 3 days! I talked to her over the phone on facetime, to let her know I was okay, but I didn't get to really see her or hug her. I was home! I woke up, kicked ass and I will be repeating this action for six weeks, if not more!
Saturday:
Wow. I am up and walking around. A little pain, but nothing compared to the night I was stuck! My surgeon told me to walk around for 10 minutes, 4 times a day. It will help with the healing and non swelling of the brain. So, Eric and I walked our garden, which we now call the pandemic garden. Seeing what we had growing and cleaning up a little stuff so our vegetables have room to grow properly! We have carrots!!! Maybe they are baby carrots, but they are carrots none the less! My carrots are growing!
Sunday:
Sunday was another good day! I just can't believe how good I feel! I actually was talking to one of my sisters on Sunday and jokingly said I was going to have to fake being in pain and sick for when my in-laws get here on Monday night, otherwise they are going to think they should have never come! I'm showering on my own. Walking around without much assistance, standing up and sitting down by myself. I really thought I was going to need help. I've barely needed any help, except for drying my legs after my shower. I've had a couple of muscle relaxers and I needed to drink prune juice with miralax, but all in all...... I just can't believe how good I'm doing!
Monday:
Another amazing day! I just can't believe it! Eric's mom and dad arrived at 7:00pm. It was so great to see them, it's been almost a year since the last time we saw them. They could tell right away I was feeling well! They saw my smile right away, but Tuesday is going to be the day they will really see how I'm doing.
Tuesday:
Well, today is day six post operation. I have some dizziness. Everytime I stand up I get light headed and real dizzy. Probably doesn't help that when I was tired during my walk I didn't sit down, I just kept going. I guess I really didn't have a choice, its not like I could just sit down in the middle of my yard. One of my chiari support group people told me it could be from one of the medicines I was on. LOL. But other than the dizziness I still feel good! Only muscle relaxers today! I zoomed my sisters tonight, they were expecting me to be pale and completely sore. Not able to talk long. I guess when people are recovering from surgery there is a look people expect, a way people hold their body and talk. From everyone I talked to they had a vision in their head of how I was going to look and I didn't look like that to anyone. YAY!
One Week Post Surgery:
Wednesday the 17th. Eric's parents are laughing and we are all joking around about how good I am doing! It is absolutely insane. I didn't have any pain pills or muscle relaxers today. No dizziness. I seriously am glad I have people here to make sure I follow the directions of the doctor, because I feel good! Tatiana asked me what my pain level is at and I told her at the most a 1. It's hard to explain, I've been in pain for so long, but now I'm not. The only weird thing is that my head feels like it is stuck on a pole, but I DON'T HURT ANYMORE! I haven't had any lower back pain, which I used to get daily! I haven't had any stand up and almost fall over spells, which I had multiple times a day! I haven't had any dropping cups from my hands shaking, which happened regularly! OMG!!!! This is just amazing! I told a friend today that I feel the difference already! I am going to be unstoppable once my 6 weeks heal time is up! It is so crazy I have staples in my head and I feel better than I have in over three years, if not more! It is just crazy insane! Seriously, I don't have any other words except for I FEEL AMAZING!
Thank you everyone for all of your prayers and thoughts! I'm certain that helped, I know I had over 200 people praying or sending positive thoughts for me during my surgery and for my healing! THANK YOU SO MUCH! I feel great and I can't wait to start this new chapter of my life! Watch out world..... I only have 5 more weeks of this and then the real living will begin!
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