My brain is a little wonky today, so I did not read back on my last page so here is a quick run down what what got us to today.
2 weeks ago I had and MRI, I texted Dr B the next morning asking for the results. I was texted by my surgeon a week ago. “You need to see Dr U either Monday or Tuesday because of inflammation”. Wow ok, there were a few more texts between us then he had to go to his second case of the day.basically he stated that Dr U was aware and wanted to see me and to just call his office. So I called Dr U’s office left a message on Wednesday then on Thursday, then again on Friday. Each time I was told by reception, he was in surgery his schedule was double booked and they can schedule me until they talk to Dr U. I receive a call back a few minutes after the Friday message. There is a cancellation on Monday 9am.
I texted Dr B, he said he wanted to be at the appointment. I Al’s reminded him I had an appointment with him the same day at 1 pm if he could not make the short notice for Monday morning appointment with Dr U.
Dr U walks in stating Dr B is with patients today and will not make it. He brings up my MRI and basically stated that there is inflammation on the dura (inflammation can also be from auto immune disease like Lupus and MS, or brain infection) now I know why dr B wanted me to see Dr U. He did a few neuro tests like stand up eyes closed and he could see the balance issues I was having. Checked my strength, had me put my finger to my nose etc… He basic illy stated that it looked like it was just inflammation from surgery and that is normal. However if I get a higher fever or a worse headache to call him and I will have a spinal tap. He broached the subject of a shunt again. I stated NO THANK YOU once again. I told him remember you had enough issues going in the first time and you really don’t want to open up that can of worms again do you. He slightly shook his head in agreement. We discussed the MRI report where is states that there is fluid in the sinuses but since CSF was ruled out by the cisternogram. I posed the question about a false negative from the cisternogram and he agreed that if it is intermittent then yes that is a possibility. Also because of the eye muscle in my sinuses could be blocking it but he was highly doubtful. They are putting their eggs in the basket that the test was correct. He said he would talk to Dr B about our appointment and that he wanted to see me again in 3 months.
I had a few hours to burn before Dr B’s appointment so I went to a favorite breakfast joint then down to the beach and watch the tide roll out. It was too beautiful of a day to waste sitting inside.
I went back to the clinic about an hour before my appointment and remembered that the Endo last week ordered a female hormone test to see what might be causing the funky sweats that I am having. So I popped in had blood drawn and should have the testing back tomorrow or the next day. The joys of being a woman pushing 50. Is it or isn’t it hormones causing some of my issues.
Dr B’s appointments are always fun. Even though we are discussing tough subjects like CSf leaks we always seem to laugh. He pulled up my MRI started looking at them with me, he said he talked to Dr U. I brought up the subject about the false negative of the cisternogram and he is in the same boat as Dr U, highly unlikely. We discussed that he wants me to go to a headache specialist up the coast not associated with his clinic. I explained that my new insurance if I get it won’t be until July 1st. So I might have to figure out a way to pay to go earlier.
During our appointment my headache started to rear it ugly head. He asked me what was going on and I explained that I usually do not stay up right this long and the headaches come on when I have been upright too long. He said “you never said it was positional” ummm yes I did, where you not listening? I told him I had the taste of CSF and the eye leaking about and hour before so I was expecting this headache. He offered me Meds I said nope I have them in the purse I just can’t take them because I drove myself.
He asked about the fluid from my eye , we made a deal to have it tested. I told him I have not been able to collect it because of being blind in one eye makes I difficult to get to with out poking myself in the eye. He goes You mean nose! I said no I mean EYE. You could see a light bulb go off. He said how when and what does it happen. So we discussed that if I drink a lot of water and bend over I just comes out on its own. He said come in next Monday or Tuesday and sit in his office while he has clinic that day and they will try to collect it to have it run in The lab next door for CSF.
I walked over to Kimberly’s desk scheduled Tuesday for my day of Eye fluid collection. She said what time will you be here? I said early about 9 she said how long will it take i told her until I leak. I promised that I would bring the girls at the front desk some kind of goodies. I’m thinking the berries and marscapone with balsamic caramel sounds good.
Dr B and I have both agreed that if the fluid can be collected and tested and it comes back negative we have exhausted all testing and I will just live with the taste and smell of CSF and know that the repair was a success. If it does show CSF then he will reevaluate my situation and will discuss what to do from there.
So there you have it. Now l just hope there is eye fluid that day.