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Post by sandyr on Dec 19, 2011 17:17:13 GMT -6
Welcome Bowtruckle. We are here to help you thru this. We have all been in your shoes.
You might also want to sent a copy of your MRI to Dr. George Jallo at Johns Hopkins. He has consulted for many of us, and does it an no cost. You can find his contact information in the Medical Centers and Neurosurgeons forum. A second (or third opinion) never hurts.
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Post by Scared to death on Dec 20, 2011 8:09:31 GMT -6
Hi . . thanks for the replies.
Have just found out now that surgery is scheduled for Jan 26, but if there is any cancellation, I will be bumped up.
In regards to rehab, I know that the hospital where I'm having the surgery, has a in-house rehab center just for neurological issues, so that is good news.
My NS did sort of explain, how the surgery will go with regards to monitoring the motor function and sensation, but I think I was still in shock.
I now know that this is going to be a long recovery, but it has also been a long journey getting here. I know this might sound strange but when the NS told me that it was a tumor, I felt a weight being lifted off of me. I now have an answer to all my years of discomfort and especially the horrible pain I have been for the last six months.
Imnotmaggie, thanks for the welcome. I'm sorry to hear that your recovery did not start off in the right direction but then you were able to get what you needed. Intervention is a great thing. I would still be waiting for my first MRI if I have not pushed doctors and the medical system. I can be a bit of a direct woman. . . lol.. . .guess that comes from being a single Mom for so long.
Bowtruckle, welcome. I also have found this site so valuable. Before they even confirmed that it was a tumor. . .they sort of told me that it could be. . .I was on here trying to get as much information as I could.
I'm also finding it hard to tell friends what is going on, at this time of year. I have decided to hold off to after Christmas to tell my elderly parents and some of my family members.
Positive thoughts only . . . I will be on the golf course again when summer comes.
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Post by imnotmaggie on Dec 20, 2011 10:00:46 GMT -6
That's a good way to look at it. I too am a single mom and my blood family lives 1000 miles away but my friends here truly take their place and I call them my family. They took care of my daughter for the entire two months I was going through surgery and rehab. I waited until Friday before my Monday surgery to tell my blood family just to keep my stress level down. Your positive outlook and goal of being on the golf course if great and will help in your recovery.
Bowtruckle, welcome to the group. I'm happy to finally have people that really know what this experience is like. I wish I would have found them for years ago.
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Post by Scared to death on Dec 22, 2011 17:44:08 GMT -6
Thanks Imnotmaggie for the encouraging words. It is hard to keep being positive, as I am in so much pain now. The NS has put me on Gabapentin to control the nerve pain in my legs, but is not doing much for the back. Does any one have any suggestions on what to do for pain control?
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Post by kansasmom on Dec 22, 2011 18:47:28 GMT -6
My son has found some help from Naproxen Sodium (over the counter 8-12hr NSAID). You can't take it in conjunction with other NSAIDs though. You can take it with acetaminophen.
He was also given dexamethasone by his neurosurgeon before surgery. Dexamethasone reduces inflammation and it helped. Perhaps it shrunk the tumor a little. He did end up getting "stuck" on dexamethasone for several months, but that was unusual. Ask your NS about it because they often give it prior to surgery anyway.
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Post by bowtruckle on Dec 22, 2011 22:36:42 GMT -6
Thanks for the welcome!
I'm currently home in Australia for Christmas, but will definitely look into sending my MRIs to Dr. Jallo for another opinion when I get back.
If anyone has experience with NSs at the Mayo Clinic in Rochester, MN, I would love to hear opinions / thoughts.
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Post by stevieray on Dec 23, 2011 22:35:01 GMT -6
If you are having walking problems I would hope you would be able to have your surgery scheduled sooner than the end of January. Does your surgeon have lots of experience doing spinal cord tumors? Good luck.
Steve
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Post by Scared to death on Dec 29, 2011 8:08:02 GMT -6
Thanks for the comment Steve. I think the reason it is so late in January is firstly because of the holidays, and secondly as the hospital is good hospital that services a large area for neurosurgery. As far as the NS being skilled, I have enquired about his experience and done some research and feel confident that he is experienced. I do agree that I would like this done sooner, as the pain some days is unbearable, and the waiting is a killer on me mentally.
Sharon
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Post by bagelcat on Jan 5, 2012 8:45:23 GMT -6
Hi, I won't share my full story at this time (I'm supposed to be working!) but I will let you know that I had a SCT removed in 2008. I had been suffering from the intense pain many of us feel, but post surgery, I was in hospital for 5 days, back walking a couple days post surgery and back at work in 5 weeks. Now I only have sore back muscles (where I had the laminectomy) when I try and do too much.
Positive outcomes are possible! I know a lot of people on this forum are struggling with some serious and real issues, but for me, I haven't had a single problem once I got home from the hospital. So don't worry too much yet...take it day by day and everything might end up OK.
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Post by Lady of Faith on Jan 5, 2012 18:48:32 GMT -6
Welcome Scared to death and Bowtruckle!
I am glad you both found this group. They have been a lifeline during my recovery. I didn't find them until I was two months post-op. I have found reading the past postings VERY helpful. Lol, so far I have read back through the last two years worth of postings and I am still learning. Your fellow members are here and willing to answer any questions you have or send you to sites that will help.
In my case, my surgery site didn't really cause me a lot of the physical pain I was dreading. My mind had blown everything out of proportion. The nerve pain has been an unexpected side effect. I started on 300 mg Neurontin/Gabapentin one time a day and am now up to 2100 mg per day. The meds have dulled it to a manageable level but I am having trouble with my short term memories and I am quite tired these days. Working on alternatives with my PCP is coming up soon. He is better equipped than I to decide what will work best to let me feel more human and manage the nerve pains.
I tell you these things only to let you know, your physical life may or may not change. You are strong and will get through it with the help of friends you will make on this site...as I have.
Please keep us updated as your new life begins.
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