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Post by Todd on Apr 9, 2010 8:54:06 GMT -6
mine was an egg sac looking tumor as well, generally thought of as classic ependymoma. these take a long time to grow. if you aren't suffering ill effects from the tumor, there might not be a reason to remove it at this time.
mine was at C7, sexual function has been different but not bad (since you brought this up - it's not a topic discussed much on the forum - not all sensation issues post op are a loss of sensation, some sensation issues are hypersensation. this has the effect of turning a person from being the "master of ones domain" to being a one minute wonder. My apologies if this analogy offends anyone I am not trying to be vulgar, I thought less of the scientific terms) in fact, it's getting back to where it was before surgery, it's one of those time to heal issues.
I don't want to provide more anxiety than you already have at this point, but the C5 area is right there with the nerves that affect your breathing. you are going to want to keep an eye on that as well. Although, I have read stories of folks with tumors higher than that who have surgery and everything worked out fine.
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Nick
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Post by Nick on Apr 12, 2010 9:31:27 GMT -6
mine was an egg sac looking tumor as well, generally thought of as classic ependymoma. these take a long time to grow. if you aren't suffering ill effects from the tumor, there might not be a reason to remove it at this time. Thanks for the reply and I appreciate your candor with regards to my concern. The more and more I have learned, the more I agree with what your saying, maybe wishful thinking, I don't know. All I can say is the thing may have been there for the last 20 years. I never had a cervical MRI before. I am currently waiting to see Dr Morrill at UT Southwestern and awaiting word back from Dr Jallo. The oncologist said most likely nothing to worry about but lets do some testing to make sure.
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Post by Tmasgio on Apr 12, 2010 11:40:28 GMT -6
Sexual function has been discussed and has also been done in an articulate way on this forum from what I can tell. It certainly has its place among us folks. I know the hypersensitivity can be a problem but for men it can be controlled with some OTC products.
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Post by Todd on Apr 12, 2010 13:25:15 GMT -6
my apologies. I hadn't searched the forum for the topic. It hasn't been discussed since I joined.
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Post by Tmasgio on Apr 12, 2010 14:05:05 GMT -6
I dont think apology is needed at all. I think we should have a special forum for it because I know there are alot of questions about it. I know I had many as I was 34 years old when I had my tumor taken out and I was scared to death that the feeling would not return. I think the two things I am grateful for is that my Bowel and Bladder work 100% and than sexual function is working as good as it did before minus the sensory issues.
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Nick
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Post by Nick on Apr 12, 2010 16:04:57 GMT -6
Sexual function has been discussed and has also been done in an articulate way on this forum from what I can tell. It certainly has its place among us folks. I know the hypersensitivity can be a problem but for men it can be controlled with some OTC products. I used the search function but didn't come up with any hits so maybe I searched it incorrectly?
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Post by Tmasgio on Apr 12, 2010 17:31:59 GMT -6
Most likely they are in the archives as I know the site has changed over the years. Robert has them somewhere on here and I know there is also a teleconference with a sex therapist.
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Post by scared on Apr 12, 2010 17:43:25 GMT -6
Hello everyone. I too am newly diagnosed. I stumbled across this website by sheer accident. Well, maybe the powers that be led me here. Anyway, I need help. I am in the wait and see category cause I'm too scared to do anything else. I have seen a neurosurgeon nearby in Springfield, Mass. He sent me to Boston, Mass. Both of them diagnosed the same thing. Astrocytoma or ependymoma at T8-T9. Won't know till a biopsy is done and that means surgery. I have had back pain for at least 12 years. Maybe longer. Last summer I noticed weird feelings in my feet. Tingling and numbness. Now it's in my hands. I have been told the hands can't be related to where the spinal tumor is but it's happening. I also get crazy headaches. Those I've had for years too. Pain is bad when lying down. When I drive for more than 10 - 15 minutes my foot gets numb. What I need is another opinion. I would love to speak to Dr. Jallo but getting to Maryland is not gonna happen right now. I wonder if I could send him my MRI to look at and maybe he could give me his opinion. I would also like to see if he's heard of my neurosurgeon in Boston. Does anyone know how I can reach him? I would truly appreciate any help. You all sound like wonderful people. I'm sorry we have to meet under these circumstances. Thanks.
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Post by betty on Apr 12, 2010 18:47:37 GMT -6
Hi, SO sorry you had to find us. I believe you can send your mri to Dr Jallo to review. It sounds like you have had symptoms for awhile. My NS who had done over a 1,000 told me I could be paralyzed from the site of the tumor down and it would be best to take care of it before I had any serious symptoms. I had had neck and shoulder pain for years but then my thumbs started having numbness and tingling and that is what brought me to the MRI. I know it is a very scary thing . I encourage you to get the MRI to Dr Jallo. We are here for you to ask anything and to encourage you so please keep us posted. I pray God gives you wisdom and directs you tot he right Neurosurgeon. Betty
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Post by stevieray on Apr 12, 2010 20:45:43 GMT -6
Dear scared,
I had similar symtpoms with the feet, back pain and worse at night due to laying down. Dr Jallo will read your MRI for free if you can send it to him, a CD is quickest, his contact information is on this website, I will track it down for you if you don't find it. He can also recommend someone in Boston or closer. My tumor was T12-L2. Good luck, keep asking questions. Steve
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