mat
Junior Member
Posts: 5
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Post by mat on Nov 19, 2013 15:37:15 GMT -6
Hey Jan, I didn't have Dr. Jallo at Hopkins, but my Dr. (Dr. Belzberg)was excellent. He's the director of the peripheral nerve center there at Hopkins and is very familiar with these types of tumors. My tumor turned out to be extradural and was dumbbell shaped. The surgery to get it out and the recovery that followed was actually pretty smooth and uncomplicated. All the worry and anticipation I experienced was WORSE than the surgery and the recovery that followed. Johns Hopkins is an amazing hospital and a great place to have spinal surgery. I was in the hospital 5 days and had two surgeries and actually stayed in Baltimore just three more days before leaving. My experience with travel was uneventful, although I do recommend letting the airline know you will need a wheelchair. You will tire quickly walking and standing in an airport. Our condo we found on VBRO. It was good for us because I wanted something that felt more like home and not a hotel room, but it was much more expensive than a hotel room--but three people came with me (my wife, my father, and my sister-in-law) so the condo really did make sense for us. I'm now six weeks out and have healed up very well. No pain. All good. I hope you have the same experience!
Mat
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Post by dolphintale on Nov 23, 2013 8:58:03 GMT -6
Hi Matt, your earlier post sounded so much like my own issues. I had surgery on July 5...it was to take the same path as yours....mine started with the anterior approach and once the ENT moved everything to the side and they exposed the tumor it was found to be a hemangioma measuring 3.4 cm x 2 cm. It had actually started to grow in the last few weeks prior to surgery. I went in with the diagnosis of a Chordoma and expected to have the two surgeries as yours. You can imagine my happiness when I woke in recuperation with the news of no cancer and the cancellation of the second surgery. I went from a diagnosis of a schwanomma, to Chordoma to ending up with a hemangioma. I'm glad to hear you came out of it with very few deficits....my nerve was also sacrificed with the tumor so my right ear, jaw line and back of my head are numb. When sticking my tongue out it curved to the right which really affected my speech and ability to eat....most of this has been corrected with speech therapy...my speech starts to slur when I get really tired or as my husband says...he can tell when I've talked to much at work:) Do you have ringing in your ears...mine had gone away but has recently returned..some nights worse than others. All is all, I'm one lucky gal. I go for a follow-up MRI of my neck in a couple of months...and am scheduled to have an MRI of my lumbar region in a year because they found 2 nodules 9mm and 4mm around my cauda equina area...I'm in a "wait and watch" mode for that area...it really is a whirl wind of tests, nerves, anticipation, etc. isn't it? I pray for your continued recovery...have a wonderful Thanksgiving...we truly have an abundance to be thankful for!!
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habib
New Member
Posts: 3
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Post by habib on May 10, 2014 10:24:17 GMT -6
Nice attitude Dophintale. I was even more fortunate than you, as my Schwannoma was lumbar, which was further from my brain, so "more better". They sacrificed a few of my nerves as well, as the tumor had grown out through a spinal foramen, and was dumbbell shaped as a result. Some wasting/numbness of the right leg and saddle area, which results in what I can pass off as a swagger at normal walking speeds. Any faster, and the ruse completely evaporates. Significant pain after adhesive arachnoiditis developed, but installed a spinal cord stimulator and a long truce has set in.
Persist! After 26 years it has become a continuous, but minor, annoyance. Technology is our friend!
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