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Post by Todd on Jan 9, 2012 10:55:08 GMT -6
bowtruckle: that, to me, is a fairly big warning sign. For a surgeon to tell a patient a tumor is benign before pathology. No doc can tell you a tumor is benign until after they get a piece of off to pathology and get the report.
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Post by Scared to Death on Jan 10, 2012 23:19:17 GMT -6
Thanks everyone for you thoughts and comments. I guess I will be having a long conversation with the NS when I see him before the surgery. I have to let him know my other symptoms and the pain in the middle of the back.
Bowtruckle, I have a lot of hip pain as well. I think it comes from where we have the tumors. . . L5-S1. Reading all you comments, am I understanding right that you are not seeing anyone until April. That is a long wait. I agree with your comment. . ."Don't worry, it's benign." Well benign can still paralyze me. Grrr! My NS thinks mine is benign as well, but you know what, it is not "Cancer" that scares me to death. . .it is knowing that there is a great possibility that my life may end. . .or drastically change after this surgery. I know that I'm in pain now, and have extreme difficulty walking, but to be completely paralyzed . . . I'm not sure what this will do to me. I have been through many traumas in my life and not sure how much more I can take. I do know that I am a strong woman, but . . . .
Sandy, I do already take meds for anxiety. . have for years. But I think I may have to get the dose uped for this. I was on Gabapentin, but have side effects, it put me into full blown panic attacks, so I have switched now to Lyrica. This has been much better and have had no panic attacks. It was strange having them again after so many years with out. . . . .10 years. I do all of your suggestions, knit, crochet, and embroidery, and have started projects.. . .just can't keep my mind on any of them. . . do them for a bit and then I have to put them down. I have still been doing work from home. . . and that has helped to keep my mind off of everything.
Jefferson, thanks for your kind words.
15 more days till surgery. . .
I thank everyone here for reading my comments and sharing their own. I know sometimes I vent on here, but I am sure all of you can understand where I am coming from. . . . this is also my therapy to keeping a sane mind. I must also say that I'm also a little frustrated with the outside world on their knowledge of SCT's.
I had mentioned earlier, that my goal was to be on the golf course again in the summer, but with everything I have been reading. . . I will change my goal first to be able to drive again. . .I could not live without my freedom of driving. . .and then my second goal is to be golfing again.
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Post by bowtruckle on Jan 12, 2012 2:02:01 GMT -6
@ Todd - it was the neurologist rather than the neurosurgeon who gave me the "It's benign, so what are you worried about" attitude. The neurosurgeon I saw was a lovely guy, but he just doesn't have much experience with spinal cord tumors. That's understandable I guess, as they're quite rare and Bahrain has a tiny population.
@ Sandy - my discs are all looking good fortunately. My sciatica is definitely being caused my the sct.
@ Sharon - I really feel for you. Especially as you are in so much pain. I hope that everything goes well with your surgery and that you do get yourself back playing golf. I'm lucky, my pain isn't too bad. Nothing that the odd Tylenol and a heat pad can't handle.
I have to leave the country to get a second opinion, which is why I won't be seeing the specialists at the Mayo until early April. I started fretting about whether that was wise, so I emailed Dr. Jallo for his advice. (It was actually more of a mini meltdown - most people here can relate to that I guess!) He was really lovely, and replied almost immediately. He said that because my neurological symptoms are quite minor at this point in time, and I'm not in a great deal of pain, there is no problem waiting for the appointment. He also thought that scheduling my surgery for the summer would be fine. He said that if I develop bladder issues or debilitating pain, then I need to get to the US sooner. It took a weight off my shoulders, as trying to schedule surgery in a different country, with a substantial amount of time off work for my husband (to care for me), is a bit of a logistical nightmare. At least I'll get to enjoy (kind of) a Minnesota summer.
Please let us know how you get on telling your surgeon about your other symptoms. As my tumor is in the same area, and a similar size (well ~ 7 cm, so not as big as yours), I'm pretty much glued to your posts. I think I would be going nuts if it wasn't for all the great information and advice on this site, not to mention the support.
Hugs,
Kirsty
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Post by mmarion3 on Jan 14, 2012 12:27:05 GMT -6
Dear Newbie, When I was 39 years old I had surgery for a t10-l2 tumor.95% of the tumor was removed. I'm 57 years old now and am doing well. I take no pain meds. I've recently retired and am enjoying life. Prior to my surgery I had excruciating back pain, bowel problems, and blatter problems. After surgery I had some pain but after physical therapy I got to a point of very little pain. All is not perfect, but I'm really happy. I have a great marriage and a wonderful ten year old son. I hope things work out as well for you.
Mike
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Post by bowtruckle on Jan 22, 2012 10:28:47 GMT -6
Dear Sharon / Newbie,
Your surgery must be coming up very soon. I hope that all goes well. You'll be in my thoughts & prayers.
Please keep us posted and let us know how you're doing.
Sending healing, positive vibes your way!
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Post by sharon on Jan 24, 2012 7:24:32 GMT -6
hi newbie, i know exactly how you are feeling as just being diagnosed 3 weeks before xmas 2011 myself. they have said i have a 4.5cm ependymoma in c3-c6 and a 6.5cm syrinx above that nearing my brain and that i should have an op asap. i hope you are getting lots of support at home from family and friends, luckily i have a great support system around me but its still hard too deal with especially as i have 2 young children 7 & 10 who only know mommy has to have an op but not why. some days i just want to sleep the day away so i dont have to think about it others im ok. im hoping that i will feel better once ive decided on my surgeaon and the op is booked. fingers crossed for us both that it all works out well,sharon
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Post by Scared to Death on Jan 24, 2012 16:34:45 GMT -6
Hi Everyone. . . . surgery is two days away - Jan 26. . . and still scared to death.
Haven't been here for a bit, as I have not been feeling the greatest. .. .not sleeping . . . headaches. . .pain when I sit or even lie down. . . can not stand for more than a minute and then I am weak and can not move my legs. . . .something has to be better than this.
Kirsty (Bowtruckle), thanks for your kind words. I did have a quick chat with the NS and told him about some of the other symptoms and he wants to wait and see how they change after the surgery.
Sharon, my name is also Sharon, I'm sorry to have to meet you under these circumstances. Let me tell you that the waiting game is the hardest to handle, so find a NS as soon as possible and book your surgery. I also sleep a lot just to get through the days, and try not to think about it all, as it is still like being in a dream to me. I do have lots of support from family and friends, and my son is being a real trooper through all this, as he now has to take on the role of caregiver. This is hard for me to have him do, as I do not want to burden him as he is trying to expand his wings. As for your children, my suggestion is that you should only tell them what you feel comfortable telling them. . . .there is no right or wrong on this. . .and only you know how much they can comprehend.
I will let everyone know how it all turns out.
God Bless, Sharon
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Post by bowtruckle on Jan 25, 2012 8:12:49 GMT -6
All the best for your surgery tomorrow Sharon. I'm sorry to hear that you've been in so much pain. Tomorrow is Australia Day - so as an Aussie, I'm going to take that as a good sign for your surgery! I will be sending all my positive, healing energy your way for a successful surgery and a speedy recovery.
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Post by sandyr on Jan 25, 2012 9:35:16 GMT -6
Good luck with your surgery tomorrow Sharon. You will be in my thoughts. Hopefully you will wake after surgery and not have the pain you do now. That is how it was for me.
Sandy
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Post by sharon on Jan 25, 2012 15:50:35 GMT -6
Good luck with your surgery i will be thinking of you and hoping that everything goes welo for you sharon x
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