2nd Opinion results

Ok, first of all, I'm sorry for taking so long to get the results published.  So, we had my appt last Tuesday, and went to Dr. Mapstone at Oklahoma University Medical Center.  He is actually a pediatric neurosurgeon who also specializes in adults with chiari and syrinxes.  He took a look at my MRI films and said that the first thing is he wants to get 2 more MRIs, of my Thoracic and Lumbar spine.  He said that 10% of individuals with Chiari, also have a tethered spinal cord.  That is basically where the spinal cord has attached to the vertebrae, and this is actually pulling the cerebral tonsils down into the spinal canal.  So, I have that MRI scheduled for May 7th, the Monday before we go back to O'Fallon for my niece's graduation.  Hopefully they will call me before and/or while I'm in O'Fallon so I can fill everyone in while I'm there.  Other than the additional MRIs, he said that the syrinx concerns him, however since I'm not exhibiting any symptoms and they syrinx is so small, he doesn't feel that surgery is a necessity at this point.  So that was good news, at least we knew that we had options.
So, armed with this new information, we talked about things a little more after this appointment.  We've actually decided that we are going to go ahead with the surgery for a few reasons.  Without the surgery, I feel like I would be living life waiting for symptoms to occur, and each and every little thing, I would worry about.  In addition, we are in a position right now that would make surgery easier than if we waited.  We are in a location where there are plenty of neurosurgeons nearby, including the chiari specialist.  A year from now, who knows where we might be, we may be very limited on our neurosurgeon options.  We also have a great deal of family in the immediate area, and a significant number more within a days drive.  This could potentially change dramatically with our next assignment.  The last influencing factor, is insurance.  If we were to wait, and I needed surgery after I got out of the military, the insurance question would be up in the air.  Whereas right now, Tricare covers EVERYTHING.  I don't have to worry about being out of work for 2 months without pay, and I don't have to worry about any copays.  I realize, cost is an awful reason to consider having brain surgery, but it has to factor in to an extent.  This alone, I'm not sure would push me to surgery, but this in conjunction with everything else, it just seems like the right thing for us to do.
We are still waiting to get the results of the MRIs on the 7th, as findings from those may influence things as well.  Once I get the results from this, I will also hopefully find out if the specialist is willing to do the surgery, or if we will have to consider going back to Dr. Robertson.  Hopefully we will also be able to schedule the surgery at that point.  Definitely more to come on that.

Decision on 2nd opinion

So, after discussing things with Tish and my primary care doctor, Tish and I decided to get a second opinion.  Of course, the toughest part is dealing with the insurance company.  I did an online search for chiari specialists in the Oklahoma City area, and found a doctor at Oklahoma University Medical Center.  The next step was that I went to the Tricare website to see if he was a network provider, and of course they didn't list him.  So, I decided to give him a call anyway and ask his office directly.  Turns out they do accept Tricare, so I'm not sure if they charge more than your random strip mall neurosurgeons that they sent me to or what, but for some reason they don't like to let people know he takes Tricare.  Anyway, after talking with my PCM, she got me a referral to the specialist....which turns out to be a pediatric neurosurgeon that also specializes in adults with chiari and syrinxes.  So, my first appt with Dr. Mapstone is this coming Tuesday.  Not sure what I'm hoping for....On one side, he might say I don't need the surgery right away, but then I would still risk further injury or deterioration.  On the other side, if he agrees that I need surgery, I'd have a second option for the surgery, and a chiari specialist at that.
My headaches have been getting more frequent, luckily the severity is still pretty low, about a 3 on the pain scale, and 800 mg of motrin usually takes care of it pretty quickly.  They are occurring about 4-5 days a week now, sometimes multiple times a day.  Still no concerns with numbness or tingling other than 2-3 times since my diagnosis.  My current NS thinks those instances are unrelated to the chiari, so we will see what the specialist has to say.  I'm sure I'll post some more after the appointment on Tuesday.  I'll let you all know.

Thoughts on Work

     So, I estimated today at work that my concentration was maybe 50%.  Everyone assumed that my pain level was that high, although I did have a headache all day, that was the least of my concern.  It's knowing that I'm going to have to have surgery.  I play it down quite a bit, mainly because what else am I supposed to do.  When I wake up in the morning, I think about the looming surgery....when I go to sleep at night, I think about the looming surgery.  Not just the surgery itself, but what's going to happen after the surgery.  How will my recovery be?  Will there be any complications?  Will my family be alright while I'm laid up and not able to do anything?  How long will I be in the hospital?  Will everything be taken care of at work?  Will I be returning to a complete disaster after the surgery?  Will I be able to stay in the military after surgery?  Will the surgery help?  Will I have to go through a Medical Evaluation Board (MEB)?  Will I be on a permanent profile for running?  Will I still be worldwide qualified?  Will I ever be able to deploy with Chiari?  Will the syrinx resolve itself, or will I have it for the rest of my life?
     As you can see, the pain is the least of my worries right now.  Unfortunately, I won't know the answer to most of these questions until after the surgery.  So, for now, I just vent on here, and press on.  I have decided that beginning in May, I will be taking quite a bit of leave to spend time with the family, and get some honey-dos done before I'm laid up for a month or two.  Luckily, the Air Force provides that extended leave, and my leadership is great and very understanding about what is going on for me.
     I have an appt with my primary care manager tomorrow morning to get her take on things, then an appt on Wednesday with a neurologist.  I'm anticipating both of them saying that surgery is my best option since that is what I've read online, particularly with the syrinx.  If that is the recommendations I get, I will schedule a follow-up with my neurosurgeon to schedule the surgery and get some last questions answered.  I will keep you all informed when I find out more.