I found this via google and have ready some of the most touching postings. I feel comfortable now, sharing my story and ongoing fight with my tumor. I was diagnosed in 1992, with a blood test for prolactin and then an MRI. It was a Macro Adenoma and the Dr at the time put me on pills. It was not unitl 1995 that I had my first surgery in san diego. I did not know then to find the absolute best Neurosurgeon in teh Country for my ensuing nightmare. The surgeon told me and my parents that he 'got it all' and that I would be fine. Well, in 2000, I found out I needed surgery again as it had 'grown back', or so I thought! It meant another week in the Hospital and recovery was rough. After this I was determined to do more research on my tumor and went to the Internet. I found the Skull Base Institute in Los Angeles and told myself that if I ever had to have another surgery, I would go there-their focus is on minimally invasive approaches, where you wouldn't need any packing. Thinking back now, I probably didn't have the greatest Endrocrynologists and have had to learn alot of lessons on the way. So, in 2004, the tumor was pushing on my optic nerve and I actually lost vision in my right eye...I was terrified! The SBI did the surgery and I had perfect vision the minute I woke up in ICU. I even went home the next day....but what this surgeon told me was awful: he said that the two previous surgeons didn't appear to have tried to get all the tumor out!!
So, now we come to the 4th one...after my 3rd surgery, my Endo strongly suggested I begin taking HGH injections after determining that my body was no longer making GH. I felt great and was convinced that the tumor would never come back. I am meticulous about getting regular contrast MRI's and had them done every 6 months-no fail! The problem is that I thought the Army Docs in El Paso (where I was stationed), would actually be accurate in their reading of my MRI!!! Well, that was not the case....just this May, after getting an MRI in Houston and then forwarded to my new Endo (which is where I live now), he called me promptly and it showed my tumor back and all around my left carotid artery now!! I was horrified and very angry! I now have had 4 surgeries for my tumor and am DONE!! I have had several hiccups since as well. (Gosh I know my post must read like a horror novel)
3 weeks after surgery I had blood streaming out of my nose and down my throat-turns out my surgeon knicked my carotid artery during this last tumor surgery and after being taken to the ER by ambulance (my first), they said I had a pseudo aneurysm!! All I knew about those is that they tend to be FATAL!! They had an IR do a coiling procedure and it was successful.
Well, I'm so thrilled to be alive and feeling better...I thank God every day for feeling ok! I'm a very active person and a Soldier who has a busy and very demanding life....I would say to all of you out there who have been diagnosed with a Tumor the following:
-Get an MRI asap-do not allow anyone to dissuade you from that
-get with the best ENDO and Neuro that you can possiblyafford-please travel if you have to-to a large city!!!
-be vigilant and educate yourself as much as you can!!
-question EVERYTHING!!! I didnt' early on and above is perhaps why...
It feels good to know there are others out there with some of the same issues...I have felt very alone for very long!
I am so glad that you wrote about your experience. It does pay to do research.
I attended a conference recently and the surgeon there told us that endoscopic is so much better than microscopic surgical techniques as the surgeon as a greater field of vision. Packing is something that is left up to the option of the surgeons - some do it and some do not.
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