Monday, December 10, 2012
It's been 10 weeks since my surgery and I'm seeing a little improvement in some areas and none in others. Cognitively, I feel a little clearer lately, but I'm so physically fatigued. I'm still getting migraines a couple times a week and headaches regularly. I'm still overwhelmed in crowded situations.
My 3 months of recovery from the surgery are up in January, and I can start exercising to build up my endurance. I'm hoping that I can see some improvement on the physical side, we'll see. I'm trying to keep from doing too much. Please pray that I can be patient and use the good moments to rest comfortably instead of overdoing it (as I have been).
They will evaluate me in about 3-4 more months to see if they want to do the Chiari malformation repair too. They said the disc surgery has removed the compression from my spinal cord, but it can take 6 months - 2 years for it to heal and be symptom free. It's too hard to know if my symptoms remain from the disc compression or are part of the chiari malformation, because they overlap.
Wednesday, October 31, 2012
I had my 4 week post-surgery appointment today. They looked at my xray and said it looks good and I'm healing well. They added a muscle relaxer to “relax my muscles” (duh), because they are tense and it will relieve some of my pain.
Over the next 2 weeks I'm supposed to use the muscle relaxers more and the pain meds less often. I should expect to still have soreness and fatigue for a while still. She equated it to a broken bone that they can't cast.
I will do another xray in 6-8 weeks and then see them again for another follow up. She said that although they successfully removed the pressure from my spinal cord and nerves, it can take 6 months to 2 years until all the symptoms are fully relieved.
They will not be able to assess whether or not I need the Chiari Malformation repair for at least another 6 months. Until then, I can just rest and slowly increase my endurance of activity while I heal from this disc surgery.
I have had a tremendous amount of peace and comfort during my recovery. Thanks for the prayers!
Tuesday, October 16, 2012
I'm still on pain meds and being waited on pretty much for my every need, so I'm doing pretty great so far. I tried to go a couple times with just plain Tylenol and I'm not ready for that. It's only been 10 days and it's nice not to self-evaluate or worry about anything. I have post op xrays in a week and then a follow up visit the week after that. Thanks for the prayers and all the food, love, and support!
Saturday, October 6, 2012
The surgery went well, better than expected, Dr. Gibbons said. He removed the disc and a bone spur and replaced the disc space with a bone graft. I have no sutures, just steri strips. I have to wear a hard collar for 5 days, and then just as I feel I need it. I was able to remove my bandages today.
Wednesday, they discharged me and I was home by 5:00 in the evening. I slept all that day. Thursday wasn't too bad. I was tired but just sore. Friday and today have been hard. I have been sore with a headache and nausea. It's been tough. My throat was very sore in the beginning, but now I am starting to be able to eat more solid foods.
Please continue to pray for healing. I think if I can eat better, I can heal quicker. Please pray against the nausea and the headaches. It makes everything more difficult. Taking off the bandage helped, and I think on Monday when I can take off the collar and shower, I'll feel better.
Thank you so much for all the prayer and support. I'm resting all I can and hoping to begin to be more comfortable soon. I'll keep everyone posted as I can.
Monday, October 1, 2012
I'm having ACDF (anterior cervical diskectomy and fusion) surgery this Wednesday, October 3 at 8:00 a.m. It should be around 2 hours long. I have had a tremendous amount of calm and peace leading up to this. I know that you are praying for me, and I humbly ask you to continue to pray for Christ's peace to keep me calm. Also, that you will pray for my husband and kids.
I will be in the hospital for 1-4 days depending on how the surgery goes. Then I will recover at home for 6 weeks. Hopefully this surgery will give me some relief from my neck pain and increase my quality of life.
I'm excited for after the recovery and I can't wait to see how this affects all my symptoms and hurts.
Wednesday, August 15, 2012
We have some definitive news and action! I saw a neurosurgeon last month to have my neck evaluated and see if there was anything that needed to be done. He looked at my MRI from 2009 and saw a Chiari Malformation. This is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
He did a repeat MRI and confirmed that I had the Chiari Malformation, but also saw that a herniated disk I have in my neck is worse and requires ACDF (Anterior Cervical Diskectomy and Fusion) surgery. The neck problem could be causing some of my symptoms and is a less invasive surgery than the chiari repair. He will do the neck surgery and then reevaluate my symptoms after a 6 week recovery process. If I still have symptoms, he can do the chiari repair too.
They don't do a chiari repair just based on scans. It is a collection of symptoms, scans, the doctor, and the patient's decision. It's hard for him to recommend the chiari repair without seeing what the ACDF surgery on my neck will do. So, it makes sense for him to do the less invasive surgery to fix an obvious problem first.
This ACDF surgery should help my neck feel better and any relief will be a blessing. If it takes care of any other symptoms, that would be great too! I have scheduled the surgery for the first week of October and I'm looking forward to it!
Tuesday, June 26, 2012
Over the last 3 years, I have felt like I've been on a roller coaster ride that never ends. I was living with a mindset that my condition is temporary and I just have to get through it. “Once I am better, I can …” This past month, I hit the lowest low emotionally of the “ride”. It was awful. I was angry at God, wondering why He hasn't healed me yet. What was He waiting for?
I remained in this low for longer than any of the others I had felt over the past 3 years. I couldn't see past where I was and felt as if it would never feel better. Some wonderful people in my life reminded me of some things in ways that I was able to hear.
Most times when people try to lift you up, it seems like it is just because they are uncomfortable seeing you in the state you are in. It doesn't seem genuine or even helpful. I have heard, “At least you don't have cancer” more often than you would imagine. Of course I'm grateful that I don't have cancer!
One friend, in love, told me about her sister who is brain injured and will never be better. A family member reminded me of a cousin I have who was in an accident and has had severe limitations his whole life. These things were not said to cheer me up or to make me stop complaining, but to help me see myself and my situation more clearly.
I am limited by pain and fatigue, but there is so much I can do! I am not limited in my understanding, my ability to communicate, or even my ability to take care of myself. I have so much. It has taken me 3 years, but I'm finally accepting my position as my life and not seeing it as a temporary landing spot until whatever is next.
God hasn't given me a disability, he has put me in a unique position to have an understanding of a whole group of people that I never had before. I have so much and through this trial, am given so much more. I can ask God now, “What would you do in my situation?” instead of whining “When are you going to make me better!”
Sunday, June 10, 2012
I had been in a dark spot this past few weeks and am slowly climbing my way out of it. I'm so grateful to all the encouragement that I received from friends and strangers alike. I'm sorry for those who tried when I wasn't ready to hear it yet.
I find I go through cycles where I am ok with things for a while, then I get so deeply discouraged that I feel as if I'll never find my way out of it. Well, I'm starting to see the light. I have been having a bout of insomnia this week and was awake this morning for the sunrise.
It's plain to see that God shines His light on us every day. You can see its beauty and maybe even appreciate it whether you are a believer or not. Once you start to connect and feel the emotion behind it, that's when you are won over to Christ. Looking at the beauty cast by God's light in such darkness won me over yet again. It's amazing how dark it can get after only a few weeks of shutting out God's light.
I'm grateful for God's patience, understanding, love, and unfailing faithfulness. I am grateful that He gave me the gift of a husband who is honest and leads me back to Christ when start to waver. I'm grateful for children to love me unconditionally and give me joy every day. I'm grateful for the support of a network of people that support and love me even when I'm surly and discouraged. There are so many things that I am truly blessed with.
I will not give up the fight.
Monday, June 4, 2012
I can't believe it's been 3 years since my concussion that started all of this. I know that I've come a long way, but right now it just seems like I haven't made any progress at all. The new neurologist found nothing conclusive in all the tests he ran. This is good news, but I think I was holding on to hope that there would be something he could find and fix easily.
He's put me on Topamax daily to try and prevent some of my migraines and Maxalt for when I do get them. These are medications I've tried before, but we are trying different dosages and deliveries.
I'm seeing my primary physician tomorrow and am going to bring up an Endocrine study that my husband and I looked into, which tests hormone levels and how they might affect some of the symptoms I'm having.
I'm feeling discouraged lately and am having a hard time fighting my way out of it. I've been trying to stay positive this past 3 years and just live my life despite my limitations, but am realizing that I have to do a better job living within them. I'm trying to face the reality of my situation and trying to be more honest with myself and with everyone else about what I am truly able to do and be.
I need to do a lot less and say “no” a lot more. I'm hoping that my friends and family can be patient with me as I find my new normal.
Tuesday, May 1, 2012
It's been a big month. Mid-April, we took the kids to Disney World on a surprise vacation. I was very nervous preparing for the trip. I wasn't sure what flying was going to be like for me and how I was going to manage the long days with lots of walking. I'm happy to say I'm still alive and I was even able to have a good time!
The pressure changes on takeoff and landing were painful. It reminded me of how weather can affect headaches, but on a quicker and sharper scale. I was wiped from a lack of sleep and the long days, but it was so rewarding to have that family time. The kids loved every minute of it and it was awesome to enjoy it with them.
After we got back, we had some other stuff going on and I just haven't felt like I've caught up yet. I'm still wiped out and having some pretty strong headaches every day. I hope I can get a few days of rest strung together so I can recover soon!
I saw a new neurologist this week. It's been almost 3 years since my initial concussion and we felt like it was time for a fresh perspective. His name is Dr. Meyer and he works at the Brain and Spine center. He went over all my history, ordered a brain MRA (like an MRI – looks at the blood vessels in the brain also), and some blood tests. I see him again next week to go over all the results.
It was pretty overwhelming to gather and examine everything from the past 3 years. I looked at every test I've had done, every medication I took, every symptom I felt. I have definitely come a long way. I'm so grateful for the support I've had in my life. There were lots of times where I could have given up, but there were always people there to encourage me and keep my fight alive.
Thanks! Please continue to pray for me and my family. God has been glorified so many times through this. Even though I've had to go through this, I know He's been holding me the whole time.
Wednesday, March 21, 2012
It's hard for me to hear people say things like “It's not as bad as what you are going through, but...” and then proceed to complain about something that is going on in their life. It's hard for me to hear this, because I truly believe it's all relative. We all have our own thing.
A good friend inspired me to be honest: I get angry, frustrated, jealous, sad... so terribly sad. I feel sorry for myself. I wallow. When someone feels better after being sick or injured, I ask, “Why not me, when is my turn?” I am petulant and impatient. I take on too much and then fail miserably.
I am so scared that I might be this way forever. This might be my thing for the rest of my life. I might hit the end of my life and not ever get to feel well again. I have forgotten what it is like to feel good.
The emotions I have experienced while being disabled have ranged from low lows to high highs. I get really discouraged, but I also feel tremendous joy. Sometimes I feel like I'm in a waiting room, ready to hear my name called.
I have watched people get hurt or sick only to be fully healed and whole in a matter of days, weeks, or months. To those people who have been hurt or sick, a week might feel like forever. For me, it seems like the blink of an eye. I've been disabled with this head injury for 2 years, 9 months, and 15 days. For me, it has seemed like forever, but for someone who has been living with a sickness or disability for longer, my struggle is a fleeting moment.
There are people with all ranges of TBI. For me, I can function pretty well. My only limitation is how much pain I can handle. The more I do, the more I hurt. My thinking and processing is slower than it used to be, but I was relatively high functioning before the head injury. Some of my processes feel like they have never even been affected. I can handle physical activity in small doses, social activity in small doses, I can read and write, I can remember pretty well as long as I'm not too overextended. I have limits, but I'm not stopped in my tracks.
I'm so blessed with a support system that loves me and tries their best to help me through this. My husband and children have stuck by me through every moment and fought this with me. I'm loved by the King of Kings, my God, who has never let me go or let me fall too deeply into despair.
I'm a fighter, I will not give up trying new treatments or seeing new doctors until all avenues have been explored, I die, or I am healed and whole. The Spirit inside me will not let up or give up.
Saturday, February 18, 2012
After the sleep study came back normal, I moved on to the next thing to try on my list. I tried to go without gluten for a month. I noticed that I had more energy and less nausea while I was off the gluten, but I wasn't sure until I tested it this past week. I tried to eat food with gluten in it on Tuesday, and the results were pretty telling. I was heavily fatigued and felt like my brain was foggy and I couldn't think.
I'm still feeling some of the effects from this one trial of gluten (four days later) and I'm not going to eat it anymore. After my initial hissy-fit over not being able to have bread and beer anymore (oh and soft pretzles, mmmmmm...), I'm able to see that it's not so bad and it is actually a good thing. Knowing is half the battle! I have no desire to eat things that make me feel so horrible. I have lots of recipes for gluten free menus and am doing really well with not missing it.
I still am working on the migraine/headache part of all this. My doctors office told me that the Botox claim was rejected, but they never even submitted it. Now we are waiting to see if there is approval for it. My insurance company says they will cover it with a letter from the doctor and we're hopeful it's approved and it helps take care of the migraines.
I think we are slowly putting humpty back together again. It's amazing that God made these intricate bodies that can be changed so entirely, but that as the maker, He can heal. So many different processes of mine have been affected by the concussion, and we are working on addressing each of those.
Thursday, January 19, 2012
I had a sleep study Monday night (they should call it a no-sleep study). It was so terrible. I felt like I didn't sleep at all, I was dreaming about not sleeping, and I couldn't tell if I was asleep or awake most of the time. At 5:30am when they woke me up to send me home, I felt awful and then they told me there was no apnea during the night.
So, no apnea is good because I don't have to wear a CPAP or any other breathing device while I sleep. I did have my hopes up that this would explain why I wake up feeling so crappy every morning, though. That's out, I guess. I'm still waking up all the time at night and don't feel rested when I wake up in the morning.
My neurologist is submitting a narrative to my insurance to try and get me approved for Botox treatments to prevent migraines. It was recently approved by the FDA for this use and has shown some good success. Because I've tried everything else to prevent migraines, this might actually get approved. I'm still getting 1-2 migraines every week.
I've had a rough month. I've been really down and discouraged for most of it and feeling physically awful. I have moments where I'm encouraged and am finding faith in my down times, but it was bad. This past couple of days have been better. A good friend reminded me of a verse: “Give thanks in all circumstances; for this is God's will for you in Christ Jesus” - 1 Thessalonians 5:18. She reminded me that these “speed bumps” make you slow down and look at why God has you where He does.
Please pray that I will continue to see Christ in my struggle and feel Him with me through every step. I know He's there, I just need to make sure I'm meeting Him. Please pray that I will be able to sleep soundly through the night and feel rested when I wake up in the morning. Please pray about the Botox treatments.