Update on the doc appointment

So after waiting 1.5 hours for my appointment (Dr B was taking care of 2 emergency walk in from urgent care) I finally see him and we discuss the cisternogram and MRI. Both which came back with reports as negative for CFS.

However, after our discussion I pull out my IPad and tell him that I did finally go back to Dr E for my vision concerns. I told him we pulled up my MRI and While Dr E was looking at the orbits, I noticed this thing in the sinus (I showed him the picture on my iPad., it has the same color white as the CSF I’m the brain vault. He was very interested in what I had found and was concerned that the report stated nothing. I told him it did not surprise me since they did not mention the rain in my sinuses after the eye surgery.

He asked that I email him the mi study so he can forward it off to my neurosurgeon and get his opinion as to what is showing on the scan.

Dr B. said that sometimes recovery can take up to 2 years for the headaches and the brain pauses, and the feeling like I am ADD because I can no longer multi task, for that matter I can not stay on any one task for more than a few minutes before my attention is diverted. When the attention has been diverted I sometimes forget to go back and finish what I originally started. This is highly unusually for me. I use to be the multitasking queen. He mentioned that it will take time and not to worry about the state disability running out in march. If we need to put me permeant disability until I get better we can do that. Ugh I hate this. I really do, just want my old boring life back.

The dilemma: I really do not want to complain because I never ever want to have to have my brain vault cracked open again. In fact i have told my family and all of my doctors basically a DNR as far as i am concerned when it come to having a craniotomy again. It was too hard on me and i had too make lasting issues. However I also want my life back. Meaning no more headaches, able to exercise, fly in a plan etc… I have been in a little bit of a funk these past few days. I’m tired of being sick. I would love to be off all of my pain Meds, however right now that is not an option. Also I am in a funk because I am blind in the right eye, my left eye is bugging me, and I am sick and tired of feeling like I am looking through a fish eye lens. Ok I will get off my soap box.

Why I need to do to fix the situation I am in? Who knows. I will wait and see f this gets better f not I will be making another appointment.

Well, I have fresh pumpkin pies ready to come out of the oven. Have a great night.


About Just Jules

USCG Vet, wife, daughter, recently blimded in one eye from brain surgery, using my passion for 3Gun as my rehab.
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4 Responses to Update on the doc appointment

  1. Man oh man. I hear you loud and clear! If I was presented with another surgery (mine was a craniectomy) – man. I tell you. I just don’t know what I’d do. I wish I had some great words of wonder for you but I don’t. I just hear you and I understand. Unless you’ve had a crani – you really don’t get it. I get it.

  2. Cat says:

    Jules I’m rooting for you! I think it is beyond awesome that you found something on the MRI that your docs need to see, even with your compromised vision you have great perception. Sending positive vibes and prayers for you.

    • Just Jules says:

      Thanks Cat! I really do think Doctors um… Surgeons are way too busy now a days to really look at things. The radiologist at the facility miss read my films back in April. He missed the brain in the sinuses completely on his report. Since then I have done numerous research on training websites for radiology which has helped me to understand what is normal in the head MRI and what is not. LOL

      Anyways, since I know for a fact that the surgeon only had time to read the report and not actually look at my films in depth. I took it upon myself to ask the hard questions. My surgeon is like a best friend, he enjoys that I challenge him. The look on his face was priceless.

      Now what will become of this new info, is up in the air. But at the very least they are looking into my concern of a continued CSF leak. Only time will tell now.

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