Reevaluation

We had my revaluation appointment at the chiropractic neurologist this week. It went well, and I've improved in a lot of areas. I haven't had a major headache in a week and a half, which has been a pretty big relief. I still have a dull headache everyday, but it's nice to not be knocked out by the big ones. My balance and motor function are still improving too.

Phase one was intensive, with 2 appointments every week, a nutrition overhaul, and lots of occupational therapy. I now start phase 2, which includes food reintroduction, appointments every 2 weeks, and more focused occupational therapy at home.

After 8 weeks, we will have another reevaluation to see where I'm at and where we go from there. I'm still very positive about the whole thing and encouraged to have so much improvement.

Please pray for my endurance, patience and motivation. I have to continue to work hard at home with less frequent accountability from the team at the doctor's office. I have to keep myself in check, and make sure I don't overdo activity even if I'm feeling more improvement. Thank you!

An occupational therapist, a nutritionist, and a chiropractic neurologist walk into a bar...

It's been a wild few weeks, getting back into town from our visit to Buffalo and getting life set up here at home. I've been seeing the functional neurologist twice a week. One day a week I see the Occupational Therapist (OT), and one day a week I see the OT, the nutritionist, and the neurologist.

The OT checks my neuro function through different tests and adjusts or changes my exercises as needed. The nutritionist has me on an anti-allergy diet, which is similar to paleo, but more limited. I am off sugar and caffeine, and only eating meats, veggies, and some fruits. I'm on a gut repair drink and various supplements to get my body in good shape for all the other work I'm doing. The neurologist does more neuro exams, chiropractic adjustments as necessary, and oversees my care.

It's a lot of work preparing food all day, taking the right supplements at the right times, and doing all my OT exercises, but I feel confident we are on the right path. There are little changes that I barely notice, but they are there.

Please pray for my endurance during this time. With homeschooling, taking care of the household, and trying to get well it can be a little overwhelming for me. I have an amazing support system and such hope that I will be well at the end of this!

Functional Neurologist Stuff

So... there's some new things on the medical horizon for me here. I saw a new doctor a few weeks ago. He's a functional (or chiropractic) neurologist at a place called Integrated Health Systems named, Dr. Shane Steadman. He trained under the guy who fixed Sidney Crosby's noggin! 

He started with a 2 hour exam and comprehensive bloodwork last week, and we had our meeting today to discuss all the findings and treatment plan. Right where I hit my head is the left/mid cerebellum, which he could tell from his exam is not functioning properly. There are also slight deficiencies in my left cortex (frontal lobe).

The cerebellum controls balance, coordination, motor functions, and some cognitive functions. It also has been tensing up my muscles, because it makes my body think I'm off balance all the time. He's given me some exercises to do with my eyes that are going to help strengthen the communication between my eyes, cerebellum, and body.

The bloodwork revealed some issues with my glucose, iron, vitamin D, and thyroid levels. I am going to start supplements to work on those issues. I've also been given a neurotransmitter protocol to try where I take serotone, dopatone, and gabatone for 2 days each to see if any of those will give me immediate boosts.

He has high expectations for this course of treatment over a 7 week period starting when I get back from my trip to Buffalo. When we asked him what they were, he said that he expected me to have no headaches, nausea, unsteadiness, fatigue, etc. at the end of this. Dan and I are very encouraged and cautiously optimistic. There is a lot of work I have to do over the next few months to keep up with this stuff. Could I please ask you to pray for my attitude, endurance, and faith?

http://www.integratedhealthdenver.com/

Time to try something new

I've been making good progress at the Neuropsychologist. I have really come to a place of calm and peace in dealing with my symptoms. It takes longer and more activity for me to become panicked or anxious about feeling the way I do. I am sleeping better and even dreaming. I am able to put things aside and deal with them later rather than feeling like I need to run away from everything.

It's great to be managing my symptoms well, but at the same time, I still am feeling the symptoms. I still wake up with a headache every day. I still experience nausea, unsteadiness, fogginess, lack of motivation, forgetfulness, and mood and emotional swings. It takes 1-2 hours for those symptoms to get worse and slow me down, which is a lot better than the 30-60 minutes about 6 months ago. I think it's time to try some more stuff.

I put a call into a Chiropractic Neurologist and I'm going to have a consultation there to see if they can do anything for me. I'm open to any other ideas. What have you heard that has worked for others? Any diet changes that have helped anyone with concussion issues?

Staying in the light

I struggled with writing this and coming out with it, but I finally came to the conclusion that I can't hold things back from people if it might help someone who is also going through this. I recently started a new treatment that my neuropsychologist recommended to me over and over again until I gave in and tried it. I started taking marijuana about 2 weeks ago.

It was tough for Dan and I to come to the decision to do this, but we decided on some parameters to make us more comfortable with it. It's legal where we live, so I'm not breaking laws to buy it. I am working on getting a prescription card for it to keep the cost down and to be able to use the medical dispensaries. I will only do it after the kids go to bed, while Dan's home, and if I don't have to drive anywhere. I've only been taking a little bit to give me relaxation and relief, without getting high or stoned.

The results have been fantastic. I would never have imagined that I would find relief in such an odd place. For the first time in almost 5 years, I'm sleeping well and mostly through the night. I even had a couple dreams here and there! Imagine, not dreaming for 5 years and never feeling rested. Either the sleep or the marijuana gives me positive results during the day too. My headache is dulled, my nausea is way reduced. I feel steadier and much more relaxed and rested. I don't have that jittery, restless feeling that I've been plagued with. My brain isn't so overworked and I can focus on the things that I'm trying to focus on.

I've tried all different kinds of medication and any results have been negligible. This is the first time I'm seeing marked results and relief! I'm still doing the neuropsychologist treatments with the brain wave training. It seems to be good to do these two things together. The neuropsychologist thinks it can help my brain see what it is supposed to be like and get used to that feeling.

I know this is weird, different... whatever you want to call it. I'm trying to treat it as a medication and take it one day at a time. I'm continually discussing it with Dan and another accountability partner to make sure I'm not abusing it. The kids know I'm taking a new medication that I have to take at night, before bed, when their Dad is around. I'm keeping track of the amounts, times, and results in an app I've found.

Please consider before you judge that I'm not the kind of person who would decide this lightly or jump into doing this without struggling with it. It's great to finally have something that is helping. We'll just see where it takes us. Please pray, not only for the effectiveness of this, but for strength for Dan and I. It is difficult for us to be bringing this into our family. We are praying to keep the positives outweighing the negatives. It's better to keep things like this out and in the light, rather than hidden away in the darkness.

  

Z-Score

We are switching things up at the Neuropsychologist. The last few treatments I've had have all been z-score training without LENS. He thinks that the LENS would have done it's magic for me by now if it was going to work. The z-score training is more like physical therapy for my brain.

It trains the brain using visual and auditory positive reinforcement. When my brain is doing what it's supposed to do, it receives reward. He can see my brainwaves at each electrode site while the z-score is happening. It's good for him to see my progress, and he's able to adjust the difficulty levels when appropriate.

This won't give me immediate results, but will be more like rehabilitating a limb. Over time my brain is supposed to get stronger and learn how to communicate more effectively within itself and to the other areas of my body.

I'm still hopeful that this can give me some positive improvement. It's more work and a longer road, but I believe that God can work through anything.  

Ugh!

Today was a day of discouragement. I woke up feeling so down and frustrated. It has been 10 treatments and I haven't seen any lasting improvement. I started to question and doubt everything we've been doing. I wondered if this guy knows what he's doing at all!

It's hard to have hope in something and then be waiting for the results to come through. We want things to be instant or at least to have a hint at what the future will bring. It's hard to hang on and trust that the Lord will bring us through the other side of something. I know He is with me and I'm going through this particular treatment for a reason and I just have to hold tight to that.

It's a crappy, feel sorry for myself kind of day. I have these every once in a while and I think it's ok to have them. I'll feel better tomorrow and be back to my positive self again.  

9th LENS treatment + z-score

I've had 9 LENS treatments so far and we have introduced z-score training the last 2 visits. He does the LENS first to wake up my brain and get it relaxed, and then does z-score training.

He hooks up the electrodes to my head and to the computer. With my eyes open I have to try to move a blimp across the screen in front of me. When my brain produces the waves it's supposed to in the right amounts, it moves the blimp forward. If my brain doesn't do what it's supposed to do, the blimp doesn't move.

The other part of z-score is with my eyes closed. Each site creates musical notes and plays the note when my brain does what it's supposed to do. It plays a melody when it's working well and is choppy when it's not doing what it is supposed to do. It's positive reinforcement for my brain.

He has seen improvement in my brain waves during the z-score training that can just get better over time. It may take more time to build retention so the results can last.  

6 LENS treatments

I've had 6 LENS treatments so far and I go for my 7^th today. This has been a lot of trial and error. I've had some physical relaxation in my eyes, shoulders, and jaw at times, but I also had increased restlessness and trouble sleeping. There has sometimes been a new headache on top of the old one that I still have after treatment. I haven't had any increase in clarity or cognition.

It's tricky, because my Alpha waves (rest, relaxation, calm, sleep) are very low; while my Beta waves (active concentration) are very high. My brain fights hard to be actively concentrating which wears it out quickly, but it doesn't produce enough brainwaves to relax or sleep well.

I'm trying to stay encouraged and not give up. The doctor has tried different things every time and has more things he can try. I think it's just about getting it right and then building on that, but not pushing it too hard and too fast.

Please continue to pray, mostly for my emotional well being. It's been a long time since I've allowed myself to visualize hope and it's scary to not be seeing results yet.

Jeremiah 29:11For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

LENS #4

I had my 4th LENS treatment today. I have another one tomorrow. 

The benefits so far: a relaxed feeling in my shoulders, eyes, and jaw; and less sensitivity to chaos. The benefits have lasted up to a day and a half so far, and we are hoping to build on that and increase the retention. The first day they only lasted a few hours and have lasted a little longer each day.

I still have headaches and most of my other symptoms, but hopefully the more treatments I do, the more my brain will respond. Maybe the relaxation will help me sleep better and have less pain. It's possible it will lead to less headaches and my body can start to recover. 


I'm cautiously optimistic ;-)

1st LENS Treatment

I had my first LENS treatment today. I didn't have any expectations going into it. The doctor put the lead on each site that he mapped last week and gave it a short electromagnetic charge. Each site he asked if I noticed any change. I felt relaxation in my shoulders after the 4^th site, and an overall relaxation in my body. The headache I had come in with did not go away and I didn't notice any other significant changes.

I have a different headache than I normally do now (2 hours later), but the relaxation in my shoulders is still present. All the sites are not normally done, so we probably just overdid it. He thinks that my sleep and my resting periods are when I could notice more of a difference. I go back for my second treatment on Friday morning.  

If you want to read more about LENS: http://www.neuropaths.com/index_files/LENS.htm

Brain Mapping

I went for my first appointment with the Neuropsych guy and had my brain mapped. He recorded 5 minutes of data with my eyes open and 5 minutes with my eyes closed. He will analyze the data and compare it with healthy brain maps.

I go back on Tuesday for the report and for my first treatment. He will send signals back to the points in my brain to try and “reboot” the signals that are firing incorrectly. The expectation is that I will be able to feel relief from pain, fogginess, fatigue, over-stimulation, nausea, and some of the other symptoms I feel within an hour or two after the treatment!

Lasting results will need to be built up over time. The improvement will only last for an hour or so the first treatment. I will have to go back 2-3 times a week in the beginning, but should be able to taper off gradually as my brain learns to retain the correct signals. The hope is that I will have permanent lasting results after 20-40 treatments.

Some connections will never be able to fix themselves, but the doctor is confident that I will see some improvement. I'm hopeful and excited that a doctor has finally understood my symptoms and has a treatment that can help!

I humbly ask you to pray with us as we go through this. I haven't felt good in almost 5 years, and have gotten used to feeling this way. I'm nervous that the good will make the bad difficult to bear. I'm nervous that I won't see a lot of improvement. I'm nervous about the length of the treatment time and the roller-coaster of ups and downs that I have to look forward to. I'm trying to focus on the positive and could really use you all in my corner.

Thanks!!!  

Philippians 4:13 I can do everything through him who gives me strength.

Back in the game

It's been a while since I've written anything. I think it's hard to keep saying there hasn't been any change. It's been over a year since my surgery. It is time to get back in the game.

I saw a Doctor of Osteopathy (DO) last week and explained my whole sad story. I'm not sure how to gauge her reaction. She said she would look into some things and see what she could figure out as far as treatments go. It didn't seem like she saw me moving past my current state. Maybe she was really interested, maybe she was trying to placate me. We'll see.

I got a comment from Kathy on a post that gave me a direction to follow:

"My daughter suffered from PCS for several years with zero help from any of the 13 doctors she saw. We finally found an effective treatment program called LENS, which is explained at http://www.virginianeurofeedback.com/lens.php My daughter's story is at http://mindahaas.net/2013/03/one-concussion-too-many-my-post-concussion-story/ The LENS treatments gave her life back to her. Have you looked into LENS? You can find nearby practitioners at wwwochslabs.com"

I've looked into it and I think I'm going to check it out. Has anyone else tried LENS? I'm wondering if there is total improvement from the treatment. I am way better than I was in the beginning, but I would really like to break through where I am stuck at now.

My current symptoms are:

everyday headache

migraine (1-2/per week)

fatigue

muscle pain/weakness

nausea/vomiting

poor/restless sleep

hazy/foggy feeling

over-stimulation of senses

James 1:5-8 MSG If you don’t know what you’re doing, pray to the Father. He loves to help. You’ll get his help, and won’t be condescended to when you ask for it. Ask boldly, believingly, without a second thought. People who “worry their prayers” are like wind-whipped waves. Don’t think you’re going to get anything from the Master that way, adrift at sea, keeping all your options open.