I have not had surgery. It has been a very draining wait. I’m still off work and am now waiting to meet a new Neurosurgeon, on May 12th, in Toronto, Ontario Canada. I already had a Neuro who was going to do the surgery, but to my complete surprise, he is not. I did not have any explanation as to why not either. I had a complete breakdown in his office. I was alone for this appointment as my husband and I are so used to the routine. We were under the impression that the appointment was to discuss pre-op, book a date for surgery etc hence the reason I went alone. Instead, he sent 2 of his fellow residents to speak with me and they would not stop talking about my bloodwork telling me that my level were fine. I explained that my recent bloodwork was taken just a week after my Sandostatin injection. This has been my nightmare since 2006. The meds don’t last and I get my Acro symptoms creeping back. Boy, was I ever in a huff and was so confused because I could not understand where all this was going? At that point, I was shaking and on the verge of tears. I told these resident doctors that I’ve had my consultations with Dr. Agbi and his fellow surgeon and they both confirmed that they felt confident to operate. Well, then Dr. Agbi finally walks in to the room and just looks at me and says...SO! I lost it. I replied back “so?, what do you mean so???” he then just said to me: “tell me about your symptoms?” Oh my goodness, I grabbed my coat and purse and was so in shock. I started to cry and could hardly speak. I just managed to say: “I don’t want the operation”. What I was trying to say was how could you get my hopes up? You said you would operate! I just had enough strength to walk out and while I did, I heard him say: “OK”.
It is still unbelievable to me how, as a patient, you really need to take control. Here I go again. Still not giving up hope. Truthfully, my wish is to not ever be a patient again!!!
New Clinical Trial: ORAL ocreotide!
9 months ago