Thursday, September 30, 2010

TBI Troubles

We are just about to reach the 27th month of my husband's care since he was wounded. It's been a long road and certainly stressful at times, but more recently it's the lack of being able to plan for anything that I'm finding the most difficult - for me anyway. I like to have some control of my situation and be able to have a plan and obviously that is something that doesn't mesh well with military life. I've also learned to let a lot of things go that are out of my control and in turn that seems to ease some of my stress and frustration a little.

It doesn't always work that way though.

One thing that really bothers me is when you do everything that you can and someone else drops the ball. I have an example as recent as yesterday when my husband went for his quarterly visit to the pain clinic. He has degenerative disc disease and a disorder of his tailbone so naturally sitting and standing for long periods of time are really painful for him. He was saying that it's getting hard to stand in formation even for a few minutes but that he's refusing to complain because there are amputees who stand there with him and if they can do it, then he's determined to do the same.

At the appointment, they gave him a shot of cortisone in his back again to help temporarily ease the pain. Mind you, they don't always work. Normally they call in a prescription for pain medication but this time the doctor forgot. He realized before the appointment was up and tried calling it in to the pharmacy but couldn't get ahold of anyone and now my husband is left being the one to jump through hoops to try and get the medication that he needs. That left him not being able to sleep for much of last night and just being in a lot more pain than usual. I felt bad for him because he's not one to want to take any kind of medication unless he absolutely needs it and now that he needed it, he didn't have any to take. I hope it gets straightened out soon for him.

Something that has really been a thorn in my side throughout the two and a half year process of recovery, has been getting a diagnosis of TBI. From day one, I have felt that my husband suffered a mild TBI from the IED blast. I have a picture of the giant crater that the IED left under their vehicle which was not light by any means. I think at least 10 of the surgeries he had were to dig shrapnal out of his wounds and he has several scars all over from where it pierced him. His paperwork even says he suffered a concussion but by the time he got from Bagram, Landstuhl, WRAMC, to BAMC, not much was said or done about TBI. In fact I've felt for a long time that they just glazed over it and didn't take his symptoms seriously. I've mentioned that on several occasions but some of his doctors have just said that it's just part of his PTSD or related to something else going on.

My husband has since admitted that early on he withheld information about what was going on with him because he didn't want to be labeled as being crazy or raise enough red flags that he should be admitted for psych evaluation. One thing that I've stressed to him that I was reminded of again over the weekend, was that everything he does is a normal reaction to an abnormal situation. Most people don't go to war at all or sustain traumatic injuries. I think he thought that by confessing that he was having some of the TBI symptoms that he felt like something was wrong with him, like he was inadequate. I have to admit, I was happy that he was forthcoming early on about dealing with his PTSD that I didn't even push the issue with TBI until a few months later.

I don't remember if it was a doctor or a nurse who did a simple exam on him and within 5 minutes determined that he didn't have a TBI. What some people don't realize is that some of the symptoms don't show up right away and sometimes they can take months to come to light. If the military does an MRI or CT scan and nothing shows up, in their eyes, that means it doesn't exist.

I started doing more research and realized that there definitely could be a link to the symptoms he has going on and TBI so I encouraged him to talk to his doctor about it more in depth. I went to a few of those appointments with him and explained what I had noticed and apparently it was enough to get him a referral to the TBI clinic at the VA. Normally at this point out, my husband goes to his appointments on his own, but if I tell him that I'd like to go with him or be his second set of eyes and ears, he's perfectly fine with it. There's a lot of stuff he doesn't remember or forgets to write down and he says it's nice to have me there to help him remember what to ask.

I happened to not go with him to the first TBI visit. The first thing they asked him was why are you here and why didn't BAMC take care of this for you? He said that BAMC kind of glossed over any desire to test him for TBI and that he doesn't schedule any of his appointments, his case manager schedules everything for him. They informed him that because BAMC didn't handle it that he might end up being billed for this appointment. Fortunately that didn't end up happening, but the lack of communication just really got under my skin. When it pertains to his injuries that were caused by enemy fire during his service to our country, he shouldn't be billed for anything. Unfortunately it happens more often than not.

While he was at his appointment he filled out a big long questionnaire about his symptoms, etc. Turns out he answered yes to about 80% of what they asked which did finally raise a red flag, or at least enough concern for them to warrant further in depth testing. Hard to believe a 5 minute once over didn't suffice isn't it? I am just glad that things are being taken seriously. I don't want him to have a TBI but if he does I definitely want it to be addressed and to be addressed prior to his medical discharged. If there's anything that can be done while he is still active duty, versus fighting with the VA later on, you'd better believe we're doing just that.

He has another appointment at the TBI clinic tomorrow so hopefully it goes well. I would like to be present for this one but it was scheduled right around the time that our daughter gets out of school and is way across town so I'm not going to be able to be there. In the meantime I've made a list of his symptoms for him again and armed him with some info from my retreat this past weekend to show him what he needs to remember to mention.

I went with him last week to talk to his PCM as well as a legal representative from the SFAC (Soldier & Family Assistance Center) and mentioned to both about how I feel about getting a TBI diagnosis. In the meantime, his PEBLO (Physical Evaluation Board Liason Officer) has been pushing for him to sign his VA claim so they can get it submitted ASAP. Believe me, I would like nothing better than to push this process along, but I am determined that it will be done correctly the first time. I don't want him to have to appeal and start the process over, I want to get this show on the road as much as the next person. Like I said, it's been almost 27 months. I personally would like to get off of this roller coaster. That being said, don't push him to sign something when he feels he needs to wait for the results of this TBI appointment and we have a chance to go over everything with a fine tooth comb with JAG next week. The legal rep from the SFAC told us that the attorney may request a hold to be put on the paperwork/PEB process pending the outcome of the TBI stuff. If that's what it takes, then I'm all for it. I just want things to be done right and to have him evaluated fairly. After all of the sacrifices that he's made, I don't think that's asking too much.

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