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.
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????
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.
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.
I've been off work now for 7 weeks and will continue to be off work while I start my new treatment plan. If this does not work, we are considering Radiotherapy.
I will still be on Sandostatin (lower dose 40mg every 4weeks instead of 60mg) and will be introducing Somavert daily injections starting at the lowest dose 10mg and see how that works???? I really thought that the increase of Sando to 60mg was going to do the trick but sadly no. I have been off work (off and on now) for approximately 4 consecutive years because of my active Acromegaly.
Hopefully, this time around, with this new treatment plan, I will see/feel long lasting results where I can go weeks/months/maybe years without returning symptoms!!!