Dynamic contrast-enhanced MRI

My husband and I finally travelled to Toronto today.  To and from home, it was about 10 hours in the car.  It was a draining day but sunny.  Met with Dr. Gentili and his team.  Overall, the appointment was positive (my husband's words).  I was trying to think positive because at this stage of the game I am so damn fed up.  I was going into this appointment determined NOT to have another MRI and have a "yes I will operate or no I will not" kind of appointment.  Well, you think I would get the drill by now...off I go for another MRI.  Dr. Gentili is sending me for a Dynamic contrast-enhanced MRI (which I have never had in the past).  He has requested these images and stated his reasons very clear.  They do make me more comfortable.  He needs these  before he makes his final verdict on possible surgery again?.  He did explain that he does not go in blind and needs a target.  I get that.  Also, my pituitary is intact (which I want it to stay that way).  He also went on to say that he does want remission for me YAY  (what does that entail?!?!).  So, now I wait for my MRI appointment and a follow-up visit with him (all in Toronto).  Wait, wait, wait, is what I do. 

 

Thinking of you all,

Julie



COMPLETE BREAKDOWN...But Not Giving Up!!!

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!!!

Timeline Photo

No Radiation For Me (at this point)

Had my visit with Dr. Agbi and we both decided that surgery is my best option.  No Radiation. The residual tumour is not near the cavernous sinus and is not close to my optical nerve.  However, it is near my carotid artery.  He is confident about the surgery.  I told him that I am concerned about loss of pituitary function (it is always a risk).   I must go for more test and meet another Neurosurgeon before we prep for Transsphenoidal surgery again.  There is no date scheduled.  I am a little apprehensive but believe that this is my best option as medication is not helping me. 

Rarely Feeling Good

Hi fellow followers,

I'm just wondering if any of you have these following episodes?  I just got back from a walk (well 1hour ago) with my son around our block.  When we got home I had to go straight upstairs as I was vomiting again and feeling quite dizzy.  This has been my "normal" for many years of and on.  Does this happen to any of you?  I know it is all related to Acro either directly or secondary to it and its meds.  I'm trying to feel/be healthy but am usually faced with the above.  Now, the way I feel right now will last most of my morning grrrr.  Am I alone in this????

Surgery Again or Radiation???

I've visited my new Endo and am very happy with her.  As of today, I am back on Sandostatin.  However, I am at a lower dose of 30mg every 4weeks.  The Somavert injections were not agreeing with me.  I am so relieved to be off of the daily self injections for so many reasons.  Now, I am in the "waiting game".  I have seen a whole new set of doctors from new Endo and 2 neurosurgeons and 1specialist in Radio.  All of whom are part of my new "team".  I am so grateful for this.  From now until my final decision, I will have a team to work with.  I have already had several consultation meetings and am now awaiting my appointment with my neurosurgeon. 

Somavert daily injections

I'm sick and tired of this disease and its meds.  The daily Somavert injections of 10mg has dropped my IGF-1 levels to a dramatic low of 180 but let me tell you I feel TERRIBLE all the time.  I'm nauseated, fatigued, dizzy to mention a few and can not even go for a walk to the corner store without almost passing out and vomiting (literally).  I'm being followed with a new Endo and am in the process of meeting another new doctor to consult on Radio hopefully soon.  I really think that all these years with the meds have had a toll on my body and mind.  I'm still off work (since February) and will continue until all this is sorted out. All I want to do is get back to life with my family and get healthy.