Stage 2 Surgery

[msuscottie]

Hi Guys,

I haven't posted for awile, but I read posts and still feel a lot of support just by relating from afar. Anyway, a lot of you don't know my story, so here's the abbreviated version. 3.5cm AN discovered last July, surgery last October. Spent 3 weeks in ICU, brain swelling almost took my life. I was in the hospital for about 31 days total, the last week on the rehab floor trying to relearn to walk, eat, shower and all that good stuff. Was off of work for almost 5 months, now about 13 months post-op, have balance issues, coordination issues, dry-eye, SSD, face is numb, major confidence issues, you know, the usual. Anyway, with surgery #1 they had to leave risidual tumor (about 8mm) because my brain was already swelling and risking my vitals. I just, on Saturday, had an MRI which I need to take into my Dr's next week to see what's happening. As of my last appt. in June the Dr's said that there was no growth, but it hadn't shrunk which meant that it was still getting blood from somewhere. Where they left it was "to be prepared at the appointment in December to schedule the next surgery to get the risidual tumor out." I thought having been through this once might make it easier, but now that the time is approaching it actually makes it harder because I had such a rough experience the first time. They both seemed to rule out radiation because of it's proximity to the brainstem, but I'll ask again when I go in. What other questions should I be asking at this point? I'm not looking forward to going through all of this again. Any thoughts?

I also have a full account of my first surgery (about 12 pages), if anyone would like to read, just email me at sryan@villagegreen.com and I'll send you a copy.

Thanks,

Scott
3.5cm AN Partially Removed 10/7/2004
Providence Hospital, Southfield, MI
Dr. Pieper & Dr. LaRouere

[Jeff]

Hi Scott,

My first question would be "Why do I need to have surgery now?" - especially if the MRI shows no growth. I had a very large tumor partially resected. For a number of reasons, I decided 21 months later to have the remaining 2.3 cm removed. Compared to the first, my second surgery was a breeze. I was out of the hospital in just under 72 hours. Had I not developed a CSF leak, the experience would have been great. I didn't have any balance or nausea problems either. All in all, the second was a much easier experience.

Best wishes,

Jeff

[jamie]

Hi Scott,

If you are curious as to whether radiosurgery is an option for your residual, I would suggest consulting a specialist in that field. Surgeons who only practice surgery are not going to give you an honest, unbiased opinion. I have heard the "proximity to the brainstem" caution before, however gamma knife and CyberKnife are capable of treating tumors that are on the brainstem, I think for most situations, the "proximity to the brainstem" concern is another scare tactic to promote surgery over radiosurgery. If you are seriously considering radiosurgery to avoid another open surgery, check with a specialist. Good luck.