So today was alternately nerve wracking/relieving. Marc was scheduled to have botox injections in his eyelids today which we had been told might help his condition. After watching a disturbing video of the procedure and doing extensive research both of us were really not too confident that the injections would work, but since this was the course of treatment for his current diagnosis we were trying to put on a brave face about it.
Marc was silent on the way to the hospital -- and if you know Marc you know that he likes to talk. The poor guy was dreading what was going to happen and personally I was hoping I didn't turn into a wreck during the procedure. Everyone was praying for us and we could feel the prayers.
This time he was seen by two neurologists, a new one we had never met and the one who had seen us in the emergency room 3 weeks ago. Finally, praise God, they listened carefully and the new neuroligist took copitious notes on everything he said. Marc was able to effectively communicate all of his symptoms to the doctors and they ran a series of tests to see how his muscle function was. After a thorough evaluation of his person and many, many questions this new neurologist told us that she was not going to do the injections because she did not believe they would work.
She ruled out a link between his bells palsy history and the likelyhood that it is connected to his exposure to mortar fire or falling down the stairs. However we were shocked when she said this could be a result of his PTSD. I came home and did some preliminary reseach and apparently they believe that PTSD may alter neurobiological function resulting in a host of health effects. She wants us to pursue treatement through his primary care giver at the VA to see about getting him in for PTSD therapy.
The other cause that it could be (but again they really don't know) is myasthenia gravis, an autoimmune disorder where the body attacks certian neurochemicals related to voluntary muscle function. She ordered a blood test that would tell her if he has this. In the meantime she put him on the medication for that disorder and if it works then we will take it from there. We should know in a few days if he has that condition and if the drug treatment is working.
Both doctors stressed that they hope it is not a neurological disease and we all hope Marc recovers.
Marc was of course relieved that they did not have to inject his eyelid area 16 times with a poisonious substance but is also bummed at the same time that we are back to not knowing what we are dealing with. If it is PTSD and it doesnt go away then he will most likely be classified as 100% disabled. He would not be allowed to work and that throws his asperations at finishing his degree pretty much out the window. If it is myasthenia then the condition is treatable but there is no cure. Of course it could be something else entirely.
I am hoping that by this weekend we will know if the medication prescribed is working. Then we wait for the test results and head back to the doctor probably next tuesday to see about his PTSD stuff. I hope then we will know more and be able to make some decisions about jobs and life in general.
Thursday, October 20, 2011
Thursday, October 6, 2011
Marc's Eye Problems and Update
I know there have been many questions about Marc's condition and we are blessed to have so many friends and family who care. I figured I would give everyone as much info as we have now as well as what happened when.
I believe it was 2 weeks ago that Marc got sick and stayed home a couple days. When he did go in to work on day three he called me on the road saying that he could not open his right eye and there was numbness and paralysis on that side of his face. He was able to make it to work and get to the nurses office before Jim got there to drive him to the ER. After trying to get care at the VA FW outpatient center he went to Hugley ER in burleson and had an MRI, CT scan and bloodwork done before being sent home with a follow up appointment with a neurologist the next day. That neurologist ordered more extensive blood tests and an MRA. All of the tests came back negative for tumors, evidence of stroke or cerebrial aneurysm. So that was good news. However, his eye still would not open.
After a trip the following week to the VA ER due to his condition seeming to worsen in that eye we finally got a diagnosis of blepharospasm. The neurologist there assured us he could drive and prescribed muscle relaxers.
Muscle relaxers only help about 5% of people with this condition and Marc is not one of those 5 %. This past monday Marc was driving to work when his left eye spasmed shut too, rendering him functionally blind. Thank God he did not wreck and was able to safely pull over and call us to come get him. We contacted the VA and the earliest anyone can see him is October 2oth. The next step in treatment is botox injections in his eyelids. These injections need to be done every three months for the rest of his life in order for him to be able to see on a consistant basis. Since it seemed so far away we tried to get an appointment with another specialist outside the VA sooner and the soonest they could see him was Oct 17th. So basically we just have to wait.
So far I have learned that this condition is exsaserbated by light and that we need to find Marc some specially tinted glasses so that we can lessen the chance of spasms when inside looking at a computer or TV and especially when outside. Driving tends to be a huge trigger so we are not sure if he will be able to drive himself even after treatment.
Right now we are just trying to adjust to life. Marc is out on FMLA leave until we can get him treatment an after that we pray he will be able to return to work, even if that means I drive him to and from his job. If not we are looking into his disability benefits and I have started searching for a flexible part time job that would allow me to bring in some income and soften the financial blow.
We are requesting prayer for a speedy recovery and for our financial concerns to be remedied. Also, the emotional toll on all of us has been enormous. Marc is frustrated that he has gone from a fully functioning independent adult to someone who can't even get himself his own clothes or serve his food. My caregiver load has doubled and there really isnt much of a break. Adaline is more emotional since she is unsure what is going on.
Thank you again to all our family and friends who have provided support to us as we face the next challeges ahead.
I believe it was 2 weeks ago that Marc got sick and stayed home a couple days. When he did go in to work on day three he called me on the road saying that he could not open his right eye and there was numbness and paralysis on that side of his face. He was able to make it to work and get to the nurses office before Jim got there to drive him to the ER. After trying to get care at the VA FW outpatient center he went to Hugley ER in burleson and had an MRI, CT scan and bloodwork done before being sent home with a follow up appointment with a neurologist the next day. That neurologist ordered more extensive blood tests and an MRA. All of the tests came back negative for tumors, evidence of stroke or cerebrial aneurysm. So that was good news. However, his eye still would not open.
After a trip the following week to the VA ER due to his condition seeming to worsen in that eye we finally got a diagnosis of blepharospasm. The neurologist there assured us he could drive and prescribed muscle relaxers.
Muscle relaxers only help about 5% of people with this condition and Marc is not one of those 5 %. This past monday Marc was driving to work when his left eye spasmed shut too, rendering him functionally blind. Thank God he did not wreck and was able to safely pull over and call us to come get him. We contacted the VA and the earliest anyone can see him is October 2oth. The next step in treatment is botox injections in his eyelids. These injections need to be done every three months for the rest of his life in order for him to be able to see on a consistant basis. Since it seemed so far away we tried to get an appointment with another specialist outside the VA sooner and the soonest they could see him was Oct 17th. So basically we just have to wait.
So far I have learned that this condition is exsaserbated by light and that we need to find Marc some specially tinted glasses so that we can lessen the chance of spasms when inside looking at a computer or TV and especially when outside. Driving tends to be a huge trigger so we are not sure if he will be able to drive himself even after treatment.
Right now we are just trying to adjust to life. Marc is out on FMLA leave until we can get him treatment an after that we pray he will be able to return to work, even if that means I drive him to and from his job. If not we are looking into his disability benefits and I have started searching for a flexible part time job that would allow me to bring in some income and soften the financial blow.
We are requesting prayer for a speedy recovery and for our financial concerns to be remedied. Also, the emotional toll on all of us has been enormous. Marc is frustrated that he has gone from a fully functioning independent adult to someone who can't even get himself his own clothes or serve his food. My caregiver load has doubled and there really isnt much of a break. Adaline is more emotional since she is unsure what is going on.
Thank you again to all our family and friends who have provided support to us as we face the next challeges ahead.
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