Finally heard from the doctor late yesterday afternoon. The conversation went like this:
Nurse: “The MRI is normal. There is a small cyst but it is nothing of concern. So, yeah. Everything is ok.”
Me: ” Ok, but she is not doing well at all and is getting worse. Can he refer us to a neurologist or something?”
Nurse: “What are her symptoms?”
Me: (Thinking, exactly the same as I told you one week ago except worse) ” Massive, horrible headache – her head feels like it is going to explode; dizzy, lightheaded, nauseated to the point of not being able to eat, pins and needles in her feet. Extremely light and noise sensitive. She is spending her days in a darkened room because her head hurts so bad. We have to do something…”
Nurse: ” I will talk to him and call you right back.”
I am trying really hard to not be angry but I am steadily simmering at this point. How dare they ignore symptoms that are potentially serious and tell us everything is fine? What do we have to do to make them understand how bad it is? Does she have to be neurologically impaired before they do something?
She cried yesterday when I woke her up to go to her OT appointment. Sobbed in agony. She doesn’t cry. In the year and a half since she dislocated her knee, I can count on one hand the number of times she has cried. She didn’t even cry when she dislocated her knee – she looked at it and knew something was wrong and popped it back in without shedding a tear. Her teacher didn’t know anything had happened until Emily told her, after trying to continue with class! Then she walked over to me to tell me she needed to go home. She does not cry easily. But she sobbed yesterday, saying she just couldn’t do it. I am actually worried about her mental health. I have heard stories about people attempting suicide to get away from the pain of certain types of headaches and that scares me. The pain she is in is unbelievable and she gets no relief.
How can it possibly be better for her to be in endless pain than to give her something to relieve her pain?
So, the nurse called back an hour and a half later to ask if we could talk to Dr Tinkle on the the 14th because the Reid neurologist was going to be leaving and it would be complicated. I tried to explain what I thought was going on and she said she would try to get us an appointment and would call in the morning.
At 8:45 she calls to let me know we have an appointment on the 15th at 8:30 – a day after we go to Cincy. It is better than nothing but still not great. So, now I guess we wait. If Em gets too bad, I guess we could call and try to get a quicker appointment or head to the ER. Maybe Dr Tinkle will take her symptoms seriously and move us forward. Somebody has to, before she slips away entirely.
(Note to self: Andrew took her pulse and BP when we stopped in to see him yesterday after the OT appt. Her ox level was 100; pulse jumped around from 80 to 97 while she was just sitting. Her BP was 97/58, pulse 84. This BP reading was lower than normal. This seems to support my theory because if her brain stem is being compressed, it can cause BP to be low, in addition to POTS symptoms.)