Here is the website for University at Buffalo's Concussion Clinic run by Dr. Leddy. I've been in this program since April and he really has a good understanding of PCS. I don't know if he can help you, but I know that my involvement in the program is very helpful for me.
http://concussion.buffalo.edu/
Monday, August 30, 2010
Ok.... I think i'm really back blogging now
I'm sorry about not writing for a while. I go through some big ups and downs. I wanted to cut off my media for a while and try to focus on getting better.
I'm still suffering from PCS. I understand things a lot better now and feel like I have a better grip on what's happening to me. It doesn't make it any easier most days.
I'm posting the updates I had sent on my prayer chain at church. This should get everyone up to speed on my condition:
(8/11/10)Hey Guys, I guess I'm due to give everyone an update, it's definitely been awhile. Sorry this is so long, but I wanted to be clear and let you guys know what's going on. I still have many of the symptoms that I started with back in June of last year when I got that first concussion.
After the second concussion in October, they told me I had herniated discs in my neck. The neck issue was keeping me from the treatment that I am trying to receive in the UB research study with Dr. Leddy. My neck has been better since the last update I gave everyone.
I was feeling a whole lot better in terms of neck pain, and we thought that I would be able to get on the treadmill for the treatment, but unfortunately the other concussion symptoms have not been resolved yet.
We have tried a few medications that are supposed to prevent migraines, because I am having on average three migraines a week. I get all the other concussion symptoms daily still (nausea, unsteadiness, low-level headaches, sensitivity to light/sound, memory issues, fatigue) and they all increase as my activity increases throughout the day.
If I stay still in a quiet environment, I can keep things under control. Most days, life doesn't really allow for that for anyone, so I end up with a pretty rough day. The medications out there to control migraines give me side effects that are worse than the benefits. We have been looking for alternative treatments, so that I am able to continue with Dr. Leddy's research treatment.
Today I had my first acupuncture appointment. I'm optimistic, but I'm also being realistic. It's hard to keep getting my hopes up after 15 months of this! I know that God has reasons for everything, and I have seen so many great things come out of me being like this.
I'm really growing weary, though. I humbly ask you for your prayers. I'm restless, tired, and I really just want to be better. I still can't drive, work, keep up with the housework, play with my kids.... Anything that I choose to do, I'm choosing with the knowledge that my symptoms will increase. It's hard to choose anything, knowing I'm going to be worse after it's over.
Thanks for your patience, your persistence, and your prayers! I love you guys for not giving up on me, even though I've been a ghost for the last 15 months.
(From 05/21/10)
Hi Everyone, We've had some ups and downs with regards to what's going on with me. A few weeks ago, I felt like I was all better. I guess since I had felt so bad for so many months that any change was significant. I still have the effects of the concussion, though.
The doctors think that the improvement has been because of my physical therapy for the herniated discs in my neck. I don't wake up with all my symptoms anymore, but I still get them throughout the day. It's a little frustrating, but I'm still grateful to God for the improvement.
I had my second exercise test Monday evening. I was able to go for 4 minutes on the treadmill while inhaling 50% CO2 the last test, and this test I was able to go for 7 minutes and 23 seconds. This is an improvement for sure, and I'm excited about that. The test has left me feeling pretty rundown this entire week. Please pray that my body will continue to heal, so that I can return to my new "normal."
I'm still in the research study, and the doctors seem excited that they can focus on the head injury now, and that my neck problem is under control. I still have to continue my physical therapy to keep strengthening my neck. There are some other issues the doctors are looking at as well.
I have a problem with the oxygen level in my blood. It's normal for us to have 99%-100% oxygen in our blood at all times. My level drops down in the 70's and 80's occasionally. They are trying to figure that out, and it might be related to why my brain won't heal.
Sorry this is so long, I know I haven't sent out an update in a while. Thank you guys so much for praying for me and my family. It'll be a year on June 7th since this all started. It's wearing on us all, but we really appreciate the love and support from our church family! Love, Kate
(From 04/01/10)
I had an extensive exercise test Tuesday night that took about 2 hours. I was hooked up to monitoring systems and asked to breathe into a tube that had 50% Oxygen and 50% Carbon Dioxide for 8 minutes. It was supposed to make my body act as if I was working out at a high level. I still had to breathe into the tube, and I had to walk on a treadmill at increasing incline until I felt as if I couldn't do it anymore. I was able to go for almost 8 minutes on that.
They said that a person who is getting enough blood flow to their brain should be able to go for 30 minutes. Thursday night I'm going to Buff Gen to do a Functional MRI. The test is 2 hours in the MRI machine. I'll be given simple tasks to do while in the machine and they will view how my brain is working (or not working) during the various tests. I was told it will involve a wide array of things from arithmetic to motor skills.
I also am continuing my physical therapy at UB Sports Medicine and Neuro, working to resolve the herniated discs in my neck. He's using traction, stretching, nerve/deep tissue massage, posture improvement, and some strengthening exercises. It's only been a week, so I'm not sure how it's working.
I have a lot of faith in these guys- they really seem to get it and know what they are doing. The test last night was pretty rough on my system, but I'm so excited that I'm able to be a part of this study! No one else in the world has access to this kind of treatment.
It's pretty amazing to see how God's working in my life through all of this. Thank you so much for all your love and support. Please pray with me that I'll be as comfortable as possible during the testing and that the results will be helpful for this study and my health improvement. Love, Kate
(From 03/23/10) Hi Everyone! I just wanted to let you know that Dr. Leddy from UB accepted me into his concussion research study. I'm so excited that out of all the people with concussions, I'm in a position to receive this kind of treatment! I've attached some of the articles about his research and his ideas to heal concussions. I'll be working with the same staff members that have helped rehabilitate professional athletes that have had several concussions like me.
I'll also be doing my physical therapy with the staff at UB, so everything can be coordinated. I'm really optimistic about this study, but I believe that only God can make me better. Please pray with me that He will work through this program to help make me better. It's been almost 10 months since the first concussion, and it's starting to really wear on me. I can't wait to get better! Thanks! Love, Kate
I'm still suffering from PCS. I understand things a lot better now and feel like I have a better grip on what's happening to me. It doesn't make it any easier most days.
I'm posting the updates I had sent on my prayer chain at church. This should get everyone up to speed on my condition:
(8/11/10)Hey Guys, I guess I'm due to give everyone an update, it's definitely been awhile. Sorry this is so long, but I wanted to be clear and let you guys know what's going on. I still have many of the symptoms that I started with back in June of last year when I got that first concussion.
After the second concussion in October, they told me I had herniated discs in my neck. The neck issue was keeping me from the treatment that I am trying to receive in the UB research study with Dr. Leddy. My neck has been better since the last update I gave everyone.
I was feeling a whole lot better in terms of neck pain, and we thought that I would be able to get on the treadmill for the treatment, but unfortunately the other concussion symptoms have not been resolved yet.
We have tried a few medications that are supposed to prevent migraines, because I am having on average three migraines a week. I get all the other concussion symptoms daily still (nausea, unsteadiness, low-level headaches, sensitivity to light/sound, memory issues, fatigue) and they all increase as my activity increases throughout the day.
If I stay still in a quiet environment, I can keep things under control. Most days, life doesn't really allow for that for anyone, so I end up with a pretty rough day. The medications out there to control migraines give me side effects that are worse than the benefits. We have been looking for alternative treatments, so that I am able to continue with Dr. Leddy's research treatment.
Today I had my first acupuncture appointment. I'm optimistic, but I'm also being realistic. It's hard to keep getting my hopes up after 15 months of this! I know that God has reasons for everything, and I have seen so many great things come out of me being like this.
I'm really growing weary, though. I humbly ask you for your prayers. I'm restless, tired, and I really just want to be better. I still can't drive, work, keep up with the housework, play with my kids.... Anything that I choose to do, I'm choosing with the knowledge that my symptoms will increase. It's hard to choose anything, knowing I'm going to be worse after it's over.
Thanks for your patience, your persistence, and your prayers! I love you guys for not giving up on me, even though I've been a ghost for the last 15 months.
(From 05/21/10)
Hi Everyone, We've had some ups and downs with regards to what's going on with me. A few weeks ago, I felt like I was all better. I guess since I had felt so bad for so many months that any change was significant. I still have the effects of the concussion, though.
The doctors think that the improvement has been because of my physical therapy for the herniated discs in my neck. I don't wake up with all my symptoms anymore, but I still get them throughout the day. It's a little frustrating, but I'm still grateful to God for the improvement.
I had my second exercise test Monday evening. I was able to go for 4 minutes on the treadmill while inhaling 50% CO2 the last test, and this test I was able to go for 7 minutes and 23 seconds. This is an improvement for sure, and I'm excited about that. The test has left me feeling pretty rundown this entire week. Please pray that my body will continue to heal, so that I can return to my new "normal."
I'm still in the research study, and the doctors seem excited that they can focus on the head injury now, and that my neck problem is under control. I still have to continue my physical therapy to keep strengthening my neck. There are some other issues the doctors are looking at as well.
I have a problem with the oxygen level in my blood. It's normal for us to have 99%-100% oxygen in our blood at all times. My level drops down in the 70's and 80's occasionally. They are trying to figure that out, and it might be related to why my brain won't heal.
Sorry this is so long, I know I haven't sent out an update in a while. Thank you guys so much for praying for me and my family. It'll be a year on June 7th since this all started. It's wearing on us all, but we really appreciate the love and support from our church family! Love, Kate
(From 04/01/10)
I had an extensive exercise test Tuesday night that took about 2 hours. I was hooked up to monitoring systems and asked to breathe into a tube that had 50% Oxygen and 50% Carbon Dioxide for 8 minutes. It was supposed to make my body act as if I was working out at a high level. I still had to breathe into the tube, and I had to walk on a treadmill at increasing incline until I felt as if I couldn't do it anymore. I was able to go for almost 8 minutes on that.
They said that a person who is getting enough blood flow to their brain should be able to go for 30 minutes. Thursday night I'm going to Buff Gen to do a Functional MRI. The test is 2 hours in the MRI machine. I'll be given simple tasks to do while in the machine and they will view how my brain is working (or not working) during the various tests. I was told it will involve a wide array of things from arithmetic to motor skills.
I also am continuing my physical therapy at UB Sports Medicine and Neuro, working to resolve the herniated discs in my neck. He's using traction, stretching, nerve/deep tissue massage, posture improvement, and some strengthening exercises. It's only been a week, so I'm not sure how it's working.
I have a lot of faith in these guys- they really seem to get it and know what they are doing. The test last night was pretty rough on my system, but I'm so excited that I'm able to be a part of this study! No one else in the world has access to this kind of treatment.
It's pretty amazing to see how God's working in my life through all of this. Thank you so much for all your love and support. Please pray with me that I'll be as comfortable as possible during the testing and that the results will be helpful for this study and my health improvement. Love, Kate
(From 03/23/10) Hi Everyone! I just wanted to let you know that Dr. Leddy from UB accepted me into his concussion research study. I'm so excited that out of all the people with concussions, I'm in a position to receive this kind of treatment! I've attached some of the articles about his research and his ideas to heal concussions. I'll be working with the same staff members that have helped rehabilitate professional athletes that have had several concussions like me.
I'll also be doing my physical therapy with the staff at UB, so everything can be coordinated. I'm really optimistic about this study, but I believe that only God can make me better. Please pray with me that He will work through this program to help make me better. It's been almost 10 months since the first concussion, and it's starting to really wear on me. I can't wait to get better! Thanks! Love, Kate
Wednesday, February 3, 2010
UPdate
Sorry it's been so long since I've written. I've had so many bad days it's been tough to stay connected.
I had my evaluation for PT a couple weeks ago, and was excited to start my rehabilitation. The therapist was awesome. She was so positive and totally seemed to get what was going on with me. She told me how my neck had become straight instead of curved like it was supposed to be.
She started by getting my full history and enlightened me to all the muscle groups that were being affected by my herniated discs at C4,5. I wasn't aware that there was so much involvement. She did some nerve and muscle stretches with me and evaluated my range of motion.
I left feeling optimistic and proactive about my PCS. I thought that I might get some relief in a few weeks.
I returned the next week to have my first official PT appointment. It was really light. She started with some heat on my neck and then took me through about 5 different stretches. There was some cage stretching, resistance bands, and an arm bike. After those stretches she applied some more heat and then stretched my nerves again.
I was ok when I left, but the next 3 days were rough. I could barely move myself. I felt like I had been hit by a truck. My symptoms were all exaggerated and on top of that, my husband was out of town. I was alone with the kids, and having a tough time with it.
I canceled the next appointment I was supposed to have there, because I was feeling too beat up to continue. I decided I would reschedule for the next week.
That appointment was supposed to be yesterday. I called the PA I had seen at my neurologist's office and checked in with her about the therapy I was receiving. She said that it wasn't the right type of therapy, and that I wasn't getting the craniosacral therapy (CST) she had recommended. She suggested I stop going to this PT place and find a place that actually does the CST.
I called the place she had initially recommended and spoke with one of the therapists. She and 3 others are certified in CST and that's all they do there. I also spoke with the office manager and they take my insurance. Good, good, good. I start my evaluation there this coming Monday. (fingers crossed)
I had to break up with the other PT place, and it wasn't fun. I really liked the therapist that was working with me. She was really optimistic and positive. I hope I'll have a similar experience at the new place.
I also saw a doctor that works for social security, disability. I saw that doctor this past Monday. To my surprise, the visit went really well. He gave me a neuro exam and a physical exam, and said he was making his recommendation for me to receive ssd. I'm encouraged by that, but I know that anything can happen. I'm trying to prepare myself to appeal if I get rejected. I should know either way in about 4-5 weeks.
Other than that, things have been pretty uneventful. I've been so tired that I haven't done much. My hubby worked at the base all week 2 weeks ago, and was gone all last week for a training week for the air force. Two weeks of waking up early with the kids took its toll on me.
This week is back to normal, trying to get back into a routine. Please pray for me and my family. We are all getting frustrated, exasperated, and overwhelmed. It's tough for them to be taking care of everything, and it's hard for me to sit by and watch.
I know that God has given me this opportunity for many reasons. I want to stay positive and trust that He won't give me and my family more than we can handle. It's pretty tough sometimes.
Thanks for listening and praying.
I had my evaluation for PT a couple weeks ago, and was excited to start my rehabilitation. The therapist was awesome. She was so positive and totally seemed to get what was going on with me. She told me how my neck had become straight instead of curved like it was supposed to be.
She started by getting my full history and enlightened me to all the muscle groups that were being affected by my herniated discs at C4,5. I wasn't aware that there was so much involvement. She did some nerve and muscle stretches with me and evaluated my range of motion.
I left feeling optimistic and proactive about my PCS. I thought that I might get some relief in a few weeks.
I returned the next week to have my first official PT appointment. It was really light. She started with some heat on my neck and then took me through about 5 different stretches. There was some cage stretching, resistance bands, and an arm bike. After those stretches she applied some more heat and then stretched my nerves again.
I was ok when I left, but the next 3 days were rough. I could barely move myself. I felt like I had been hit by a truck. My symptoms were all exaggerated and on top of that, my husband was out of town. I was alone with the kids, and having a tough time with it.
I canceled the next appointment I was supposed to have there, because I was feeling too beat up to continue. I decided I would reschedule for the next week.
That appointment was supposed to be yesterday. I called the PA I had seen at my neurologist's office and checked in with her about the therapy I was receiving. She said that it wasn't the right type of therapy, and that I wasn't getting the craniosacral therapy (CST) she had recommended. She suggested I stop going to this PT place and find a place that actually does the CST.
I called the place she had initially recommended and spoke with one of the therapists. She and 3 others are certified in CST and that's all they do there. I also spoke with the office manager and they take my insurance. Good, good, good. I start my evaluation there this coming Monday. (fingers crossed)
I had to break up with the other PT place, and it wasn't fun. I really liked the therapist that was working with me. She was really optimistic and positive. I hope I'll have a similar experience at the new place.
I also saw a doctor that works for social security, disability. I saw that doctor this past Monday. To my surprise, the visit went really well. He gave me a neuro exam and a physical exam, and said he was making his recommendation for me to receive ssd. I'm encouraged by that, but I know that anything can happen. I'm trying to prepare myself to appeal if I get rejected. I should know either way in about 4-5 weeks.
Other than that, things have been pretty uneventful. I've been so tired that I haven't done much. My hubby worked at the base all week 2 weeks ago, and was gone all last week for a training week for the air force. Two weeks of waking up early with the kids took its toll on me.
This week is back to normal, trying to get back into a routine. Please pray for me and my family. We are all getting frustrated, exasperated, and overwhelmed. It's tough for them to be taking care of everything, and it's hard for me to sit by and watch.
I know that God has given me this opportunity for many reasons. I want to stay positive and trust that He won't give me and my family more than we can handle. It's pretty tough sometimes.
Thanks for listening and praying.
Friday, January 15, 2010
uggggghhhhh
I thought I'd log in and share with everyone how horrible I feel today.
After all my upbeat attitude yesterday, maybe I've worn myself out. I think the ups and downs of this PCS are really severe sometimes.
I feel like garbage today. Really spinny and horrible migraine. "spinny" is my term for lack of a better one. It feels like i'm on a bad trip or something. I can't really put it together.
I really don't like these types of days, go figure. It's hard to get through it when I hurt this much! Time for some Treximet........
After all my upbeat attitude yesterday, maybe I've worn myself out. I think the ups and downs of this PCS are really severe sometimes.
I feel like garbage today. Really spinny and horrible migraine. "spinny" is my term for lack of a better one. It feels like i'm on a bad trip or something. I can't really put it together.
I really don't like these types of days, go figure. It's hard to get through it when I hurt this much! Time for some Treximet........
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