First of all, I am thankful for the existence of this group. Reading others similar experiences has been so healing and encouraging, just to know others are going thru something similar and on their own journey of living with tumor, effects of craniotomy, finding their new normal and adjusting to all this implies with no frame of reference for their life getting turned upside down.
I had another very frustrating visit with my NS on monday and am trying to decide if the best thing is to get another NS, or just fall off the medical grid. The only one of my doctors at Cleveland Clinic who seems to get our situation is my neurophalmologist, he is so kind and genuinely caring. NS and NO just seem like they don't even see me, just the tumor. It is beyond frustrating to extract any information about my own condition from them. With the neurologist/neuroncologist, I kinda get what's wrong: he is also a researcher and cancer biologist, and having a benign tumor, he's just not interested.; that man needs to go back to his lab. But this does not help me when, in needing to change AED's, he throws out a suggestion of 4 meds. to try, literally tells me nothing about them, then wants me to pick one, and just stares at me, like "well..." Even his nurse was shocked, when I later asked her if it was just me. This is like a microcosm of my experiences there.
My tumor, a cavernoma in rt. cavernous sinus, required a skull base NS for craniotomy, and mine is technically recognized as one of best anywhere. My neurophal. told me that he is best surgeon he has ever seen, and I was in good hands. This was a week before my surgery(10/14/11), and his comments literally got me thru the last stretch of time before surgery. It sure wasn't my NS being helpful, explaining things, or even his caring beside manner. His definition of "informed consent" and mine are worlds apart. I found out more by reading parts of his textbook on menigiomas and skullbase surgery . NS nurse set appt. so I could ask questions I had about tumor, current side effects, ect that she felt unqualified to answer. I told her to first ask him for his permission to do this, because I didn't want it all to be another frustrating waste of time. Our previous encounter had been quite confrontational, as I backed him into corner to get some info. and a big admission from him, that he did feel tumor was a hemangioma before surgery/biopsy, but would only tell me he didn't feel was a meningioma, and give me a laundry list of possibilities. He knew I was only wanting his best quess before the biopsy. But as an RT. I know that if one has a good image and knows what they are looking for(he def. would fall in that category) one can differentiate between the two. It was huge that he admitted that" the path. report confirmed what he suspected all along." but now he is angry and not talking, and this may be the last bit of anything I get from him. He was reluctant to look at latest MRI. When I asked about a specific concern about carotid, as report said tumor was causing "slight narrowing of it's lumen", he said" Why don't you just let me interpret the MRI and radiologist's report". He knew I had both MRI disc and report then. His saying that was like a verbal slap. I think I intimidate him, having some medical knowledge, not near his own, but enough to ask the right questions. He has complained to nurse that I ask so many question. Well, my brain, my tumor, so yeah! She says to just continue to trust him and let him take care of me, that he does care about his patients and wants only best care for them. But I feel as though I can not continue to do this, crying from anger or frustration after almost every visit. Still having questions from the past Fall even.
I will try to get some answers from neurologist in early June and if not, am so ready to be done with the lot of them. I never plan to have another surgery , had a 40% resection, and in fact how I feel now is that I regret having that surgery. I may in time feel differently about that, but since my surgery, I feel I made huge mistake to have craniotomy; I do not want to make an emotional decision, but it is hard to be objective when it is your tumor.