Alive Day #4

Yesterday was Bryan's 4th Alive Day. I was feeling very emotional the night before as I watched the past two episodes of "Army Wives" about TBI. I quit watching this show a while ago because it brought up too much "stuff". Sometimes it's hard enough to feel what is going on in your own life that it becomes too hard to see it be played out on TV.

However, a wounded warrior wife texted me and told me to watch as it was going to be about TBI. I watched as Joan got treatment for what seemed was a mild TBI. My husband was never offered that. We sought out help on our own 3 1/2 years later. That is another reason why I quit watching the show, it isn't realistic in some avenues. However at the end when they deployed out of the hanger it brought back those old feelings. Lonliness, fear, nervousness, pride, anger, etc.

Nonetheless I knew my emotions were running high because the day I got this call changed my life forever. The anniversary was coming and I couldn't stop it or avoid it so I decided to wallow in my grief for a couple of hours.

With all that being said I am in such a good place, we are in a such good place. When Bryan called he knew something was wrong and I explained how I was feeling. He was so caring and thoughtful. Before he would have said just get over it, this day comes every year. It's amazing it took this many years to get here but I give the credit to God. Prayer, deligince, patience, and understanding is what got us here. I never forget what we have been through and I would do it all again if I had to. We are lucky, blessed beyond belief that Bryan is still here. We celebrated with a nice steak dinner complete with dessert and had a wonderful Alive Day party last weekend. All our friends and family were here to celebrate how far he has come.

Happy Alive Day to my Hero, my love, my husband.

Call with Dr. Harch

I am going to include the 3 SPECT scans that Bryan had done in New Orleans, the first scan is before treatment, second is after 1 treatment of HBOT, and the last is after 40 treatments. They will be inserted in that order. Please click on pictures for a bigger view. Below that I will include the explanation that Dr. Harch included as well as the notes I took on the call we had yesterday.
Brain Scan 1










On each print of each scan are the transverse slices of the brain blood flow images on the right and the three dimensional reconstruction of the slices on the left. There are 4 views of the 3-D reconstruction. When looking at the transverse slices of each scan date remember that you are looking at each scan slice from your feet so that the right side of each slice image on the paper, as you are looking at it, is the left side of your head and vice versa. The slice image is in the position you were laying on the scanning table so that the top of each slice image is your face and the bottom is the back of your head.

The color format is white/yellow, orange, purple, blue, and black in descending order of blood flow. The scanner computer picks the area of highest brain blood flow and gives it a relative value of 100. All of the remaining little voxels (cubes) of brain blood flow are referenced to this value of 100 so that the scan gives a picture of each brain area's blood flow in relation to the rest of the brain. The most important finding is smoothness of each slice or balance of blood flow in the brain. In other words, normal is the least variation in colors. Abnormal is when you have bright white/yellow areas alternating with orange, purple, or blue. The effect of HBOT is to cause the brain to function more normally and have a very narrow range of brain blood flow. This translates to a color map that is smooth, i.e., very little alternation between high and low blood flow. If you look at the two scans side by side you will see a smoothing effect after HBOT. This usually correlates with a person feeling and thinking better.

The three dimensional pictures are a computer reconstruction of the outermost voxels on the entire surface of the brain using the transverse images. Most of the time, but not always, if the transverse images show the smoothing effect after HBOT (again, the most important finding) it will be captured as an improvement in the 3-D images. The 3-D's show four views of the brain: front, both sides, and top. When there is a significant reduction in brain blood flow the computer will register it as a "hole." It is not a real hole in your brain; it is just a method to visualize the areas of injury or areas that, in general, are not working well as a result of your injury. Most of the time the 3-D's show improvement in the areas of significant deficits in blood flow after HBOT. Sometimes there is some rearrangement of blood flow such that some small holes can appear after HBOT. This is not significant. The other finding of importance is that the high/low variation in blood flow described above on the transverse slices gets translated to a "rough" appearance of the surface of the 3-D's. In almost every case after HBOT the surface of the 3-D appears smoother. The rule of thumb is that the transverse brain slices truly register the injury and the 3-D usually is consistent with the transverse slices. If it is not don't be concerned because the 3-D is not an exact measurement. It is a visual tool to help you read brain blood flow in your brain at the time of the imaging.

Also included is a copy of your neuropsychological (cognitive) test scores before and after HBOT as well as your PTSD and quality of life questionnaire scores.

It is going to be hard to compare these side by side. However you can see the brain damaged areas, yellow and white get better even after 1 treatment. Dr. Harch stated that they saw one of the biggest improvements after just 1 treatment. He had a huge color change in the 5th and 6th rows on the first and second scans.

The "hole" indicated that the frontal and temporal lobes were damaged. These are most common with memory loss. The brain injury was all over which is common with IED brain injuries but there was more damage in the frontal lobe with a emphasis in the left. He said that there was a remarkable change in the imaging and he fit the study perfectly. He said this injury was very real and the problems that he was having were definitely from the TBI. It was nice to feel validated and get treatment when Walter Reed basically said wait two years and if it doesn't get better that's as good as you will get.

On the neuropsychological test evaluation. His IQ improved 6 points on the pre and post tests. There are areas that can't be learned or practiced and he improved vastly in these areas. He improved in the peg board, auditory memory, and verbal (the biggest thing that improved).

Bryan's depression index went down 19% and this is the biggest they have ever seen. His anxiety also went down considerably. His PTSD also went down and his symptoms of depression and anxiety went down.

Finally he said that there will be residual problems and suggested 40 more treatments to improve his brain. He said that Tricare has been paying for these and if he needed help let him know. Aging, like I mentioned in my last depressing post, can become quicker with cognitive problems. He said that don't let the doctors think he is crazy when he starts having problems and demand more HBOT. Right now we will be shooting for 40 more treatments with a random 6 or so maintenance treatments per year.

Sorry if this is confusing (I don't understand a lot of it myself) but wanted to share to let other's know there is hope. Things can get better and there is a treatment for this without eating a bunch of pills. I am so thankful and have been quite emotional since we went over all this yesterday. With his Alive Day coming up and being validated and knowing this helped. I feel so blessed.

Breathe

The 28th it will be 4 years since Bryan was seriously injured. Before that he was deployed for 10.5 months. I feel like I haven't truly breathed in 5 years. I feel like I was holding my breathe for his safe return, I was holding my breathe that he would stablize and make it home alive, and I was holding my breathe waiting for the next explosion or anger outburst.

While things have been for the most part great since January I still feel like I am holding my breathe. I wonder when the ball is going to drop, when he is going to go back to his reclusive exsistance. I wonder if he is going to come home one day and say he quit his job, or he had another wreck, or he wants to move. When am I ever going to be able to let go and breathe? I think that anyone that has sustained a similar trauma feels like things will never stabilize. That you are constantly in this state of limbo.

I am not naive however I know that something can happen at any time. We don't know everything about his injury or if something is going to come up one day. I know his life is going to be shortened from this. I made the mistake of going to this alzheizemers seminar once. They said that those that have a TBI can start showing symptoms of alzheimers as early as 40. That is 7 years away for Bryan. The natural aging of people who are healthy, have strong bones, all their pieces start very late in life but is it going to start earlier for him? He is already eaten up with arthritis. I am not sure how I started thinking about this but I want his quality of life to be good. I don't want him to suffer, I want both of us to breathe.

Brain Scans and Orthotics

Last weekend Bryan got his brain scans from the hyperbaric treatment. We are making a phone appointment with the Doctor to go over them. From what we can tell in some areas Bryan improved as much as 60%. This is great news and I am so happy. Now that we have the results we can take them to his Primary Care Doctor and he will refer him to the hyperbaric center here. Let's just hope that Tricare will pay for it.

Remember the whole ordeal with the Orthotics? It took Bryan three trips to Johnson City before they were finally made. They still have not arrived in the mail. Bryan called his case manager and they forgot to put the order in so she had them submit it. Unreal! That was several weeks ago and they still aren't here. His feet kill him in the steel toe boots he has to wear for work and he could really use them. Always a fight and hurry up and wait.

In other news I have been going weekly for my bee and allergy shots. Remember this reaction I had on Bryan's last Alive Day? Well I got some blood tests done for the bees. They said I was allergy to 4 out of 5. I ended up getting scratch tested for the one, Honey Bee, that I didn't come up positive for. I ended up being positive for that as well. They were injecting me 11 times a week. 9 injections for bees and two for allergies. My arms hurt so badly when I get the bee shots. My muscle feels like concrete, my entire upper arm is red and swollen, and they felt as if they were on fire. I couldn't sleep or brush my arms against anything.

I couldn't take it anymore a couple weeks ago and called the doctor. They said I am having a reaction and put me on steroids and reduced the dose from 9 to 3 a week. I was so thankful to feel better before my trip to DC and have a break from injections. I went Monday for my lower dose of bee shots and it got hot and my muscle hurt again. Apparently I am so allergic that even the mild dose of 0.03 dose is killing me. It didn't last as long and the flaming wasn't as intense. That night I got a migraine. I don't know if I can continue this anymore. I am going to try two more times and if it doesn't get better I am quitting. I am not going to be miserable half the week. However I don't want to be scared of being outdoors or working in my gardens. We will see.

4th of July Weekend

Wednesday before the Fourth I got a call from the Wounded Warrior Project inviting us to a show at the Ryman on Saturday night and the fireworks show on Sunday. I was a bit concerned about the crowds and the fireworks as neither of these things are Bryan's friend. I called Bryan and asked if he wanted to go. I told him they would have a VIP area where we would be away from the crowd and if he didn't want to stay for the fireworks we didn't have to. He agreed!

A couple of my friends from the caregivers retreat were going to be there and our husband's could meet. We have talked so much about our husbands that it was amazing that we had never met.

We headed to Nashville Satuday morning and spent the morning with my Mom and Sister. We then headed downtown for the show and the main artist was Wynona Judd. During the show they talked about the Wounded Warriors and there was a standing ovation. It definately sent a chill down my spine.

Sunday we spent the day at my Dad's house and swam at the pool. Bryan was being very social and we had a great day. That night we headed downtown and got there early enough before the major slew of people came filing in. Bryan and my friend's husband started talking and he spent the rest of the night in the chair next to him telling war stories. I was so glad he didn't flee to the usual corner and not speak to anyone.

We stayed for the fireworks and I was definately concerned. Nashville has some of the best fireworks in the Nation so it is very loud. As they started I reached back and held Bryan's hand and watched the show. Some of them even scared me. I know that Secondary PTSD is something I have and usually I will react when Bryan reacts or in anticipation of a reaction. He did very well. At one point he got this nervous smile. I know he enjoyed them but was also trying to stay calm. I am so thankful for this opportunity from Wounded Warrior Project. If we hadn't had our own area it wouldn't have worked for Bryan. For the first time since he was hurt we got to enjoy the 4th of July together.

I ended up with a migraine that night and Bryan had to fight the traffic to get us home while I was in horrid pain. The next day I asked if he felt OK while watching the fireworks and he said yes. I think he is finally learning some coping skills and opening up to fellow wounded warriors. Bryan even said next time we head to Nashville that he wants to meet up with this couple. Progress! I am so thankful for it.

I am in DC this week. I am off work and my Mom is heading here for a little mini vacation. Everytime my Mom came to visit us when we lived here it ended up being a disaster. I want her to come and enjoy things without the stress.