How long have people waited for surgery?
Hi, I was diagnosed with a 48mm pituitary macroadenoma a month ago. I've been having lots of symptoms, including severe and frequent headaches, nausea, dizziness, loss of vision (peripheral vision check done and my left eye has lost much of its peripheral vision, as well as some loss in my right eye), palpitations, and pain in my joints and bones.
It's been a month now since they found the tumour on an MRI, and it's compressing my optic chiasm as well as having spread into my cavernous sinuses and internal carotid arteries on both sides as well as into my sphenoid sinus.
I'd presumed that, on discovering the tumour at the size it is and with my symptoms getting worse, I'd have been prioritised for surgery, but am still waiting to see the consultant - an appointment is booked for tomorrow, which will be a month since the MRI results, but I'm wondering whether I'm likely to have another long wait before surgery.
Life feels very much in limbo as I'm off work because am struggling to concentrate and am experiencing headaches and sickness but my sick leave only covers me for a couple of months so think I may have to go back, despite feeling rubbish, while I wait for a surgery date.
Anyone got any thoughts/experience/advice?
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Hello..I am sorry you have to go thru this. I found out about this 3 mm tumor that I have back in October. I have been waiting after 5 long months of numbness tingling in my face, ear and nose. My insurance keep denying me to get a second opinion outside of my network. I see a surgeon on the 25th so hopefully we will schedule for surgery at that time cause I'm tired of waiting.
Just a suggestion for those about to turn 65 and go on Medicare. If you choose a Medicare Advantage plan it is usual to run into this problem of being hassled about getting second opinions outside of their network. Also, there have been many complaints about the timeliness of getting prior authorization for needed procedures. I attended a seminar about the different options when one is eligible for Medicare and chose traditional Medicare with AARP supplemental. Prior authorizations , for me, for the most part happen the same day that I meet with the doctor. I don't have to meet a deductable nor make a co-pay. You do pay a higher premium each month but for me it's worth it to be able to choose my own doctors outside of a Medicare Advantage network with no hassle.
i AM a former renal sw who dealt alot with medicare insurances because dialysis is paid at 80%y and the are responsible for the remaining 20% for a months of treatments this could be well into the $600. range. When we turned medicare elgilble, i told my husband who is now diagnosed with Glioblastoma , that we were going to get medicare and aarp supplement, yes its costly but the monthly premium is still less than the copays that accumulate with any serious illness as well you are their mercy re; doctors and hospital choice. I urge anyone to heed what the person above says, We have not had a bill, he is now at 13 months, unfortunately the spot was not operable, not could it be biopsied , the latter precluded us from seeking any other options, we are happy with our team, he had radiation/chemo, incenter chemo and oral. Unfortunately he looks better on paper than he feels in person, and now it is the ? of toxicity with txs so with nothing to loose he has stopped treatment. for the past 6 weeks, his appetite has just returned but his mental functioning and mobility are declined but stable at present but the fatigue remains overwhelming and disabling. we take one day at time, we know that it was slow growing, when first started, as i noticed symptoms as early as 2 years before dx, but he minimized them until i put my foot down. Also tried the other tx , with putting electrodes on for 18 hours a day, that was chaos between the lack of good support and it having several interruptions with alarms, he stopped that As it was we were getting it reimbursed by medicare, and they went up to several appeals with the final decision this past dec, 4 months after he stopped it, Medicare was clear we are not on the hook for it, some people swear by it, others not so much, but nevertheless a personal decision.
sorry, typo, we were NOT getting the 2nd tx reimbursed by medicare, they denied claims for several months .
dbcondrey: I am very sorry to hear of your husband's diagnosis. It is such a challenging situation for him and also you, his primary caretaker. Hang in there. You're his go-to support person and he appreciates it. (I know just a little about about the caretaker part as I had my dad come live with me the last year of his life after he was diagnosed with inoperable lung cancer.)