Nick
Full Member
Posts: 26
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Post by Nick on Apr 16, 2010 15:59:21 GMT -6
Thankyou Teresa and Todd. Well There is at least one of you walking around with one of these little fellas going along for the ride..
I completely agree Teresa, many of them go undiagnosed and live peacefully, keeping my hopes up for that scenario.
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Post by tc on Apr 16, 2010 19:27:45 GMT -6
Thankyou Teresa and Todd. Well There is at least one of you walking around with one of these little fellas going along for the ride.. I completely agree Teresa, many of them go undiagnosed and live peacefully, keeping my hopes up for that scenario. "Bobmiami" is another person in the "watch & wait" category in this group. He does not have any symptoms, even though his tumor is bigger than mine. Just a side note - when my husband had a business trip to Florida last January, we got to meet Bob in person. Such a nice man. It's been such a blessing to have him as a friend through this. I really appreciate him and all my online friends! You're a godsend. Teresa
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Post by bobmiami on Apr 18, 2010 6:31:53 GMT -6
Nick, Your question lands squarely on my doorstep. My ependy is at C6/7 and I have "known about it" since Aug 2007, so I'm pushing 3 years of "co-existence".
GO CAREFULLY - and GO SLOWLY - and DO YOUR HOMEWORK! That would be my advise to to anyone with newly diagnosed spinal cord tumor, ESPECIALLY IF your symptoms are not incapacitating or extremely painful.
I am the "poster child" for "WAIT and SEE"
Looking back, the ONLY reason I know I have a spinal cord tumor, it turns out, is that a bulging disk at C5 caused left hand tingling, left arm funny-bone feeling, and I could produce a sharp pain when I "stretched my chin up" while shaving my neck. After the 2nd night of left hand tinging I was thinking heart attack symptoms so I went to the Doctor.
Nick, Look up "Post Laminectomy Syndrome". - It's what you get FROM the operation (that you didn't have before). - Todd's described afteraffects are a good approximation, but they vary.
And here's the value of our group. NO DOCTORS told me my symptoms were caused by the bulging disc! TODD DID! Later the NS's agreed.
There were OTHERs, on this group, who carefully counseled me. (One memorable quote: "I would go slow about deciding about the surgery because this operation really kicked my ass!".
Thank God for The good counsel I received. Herek's the scorecard of opinion's i received: A/ UofMiami NS - CUT Oct '07 B/ VA Miami NS - CUT Nov'07 C/ Dr. Jallo - WAIT - May '08 D/ Dr. Fessler# - WAIT - July '08 E/ Dr. Pryzyzblyski #- WAIT - Oct '09
B & F/ VA Miami NS - NOW agrees to WAIT - and MRI's move fm /6 mo to /12Mos.
# = indicates Minimally Invasive specialist NS would offer to remove Intramedullary Spinal Tumor WITHOUT a Laminectomy.
The BEST prognosis, after 2.5 years of waiting and worrying, was from Dr. P in New Jersey who told me in oct "My gut feeling is that you will outlive it".
Nick, I confess to a certain amount of guilt, after having heard some many stories of those with far more serious symptoms and affects, and I am inspired by the courage, perseverance, and wisdom I see on this site. I am one of the "lucky ones".
However, I think I can be considered a "success story".. at least so far, and so i give counsel for caution and optimism.
Bob C6/7 Ependy since Aug 2007 - Wait and See (No surgerys yet)
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Post by scared on Apr 20, 2010 13:42:51 GMT -6
Dear Bob, I enjoy reading your posts. I am newly diagnosed, January of this year. I have been advised of the risks of not having surgery. I do not believe they outweigh the risks of having surgery. Not at this time anyway. I feel great now, better than I have in years. I don't know why, but I truly believe for me that stress has a heck of alot to do with pain. I notice whenever I am stressed out the pain in my back increases. I have come to terms with the knowledge of having a spinal cord tumor. I leave it in God's hands now. When and if it is ever time for me to have surgery, I will know. For now though, I am going to enjoy everyday to it's fullest. I am in the process of getting my MRI to Dr. Jallo for his thoughts. Believe me, I am not going to put my head in the sand. I am going to look up Post Laminectomy Syndrome. I have never done so much research on one subject in my life! Keep posting! Scared
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Post by bobmiami on Apr 21, 2010 15:32:11 GMT -6
Dear "Scared" / Well informed.
I agree with Betty. You should think about changing your online name from scared to something she said " well informed" or "hopeful"., or ... (surprise us).. something that inspires US (as well as you.).
From your last post, you are no longer scared, and yes. - you are becoming well informed. We have all gone down that road.
As you 'metamorphasize' from scared to well informed, there is also something else that happens... something good. There is an awareness, an appreciation of what we have. Lot of folks on this and other sites mention it. it's kind of of a feeling of "I woke up (or slowed down) and smelled the flowers.
AND.. we need a new thread. ... So folks can relate to your circumstances. Right now it's mixed in with Nick's "New diagnosis". - that's fine - we all share . but a new post will be good too.
Bob C6/7 since 2007 - wait and see.
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Post by betty on Apr 21, 2010 20:37:31 GMT -6
Bob, Your posts always inspire me. I am so glad you are in the "outlive it category" which I will believe for with you. I like that! I have never seen (though have experienced:)the Post Laminectomy syndrome so that's something I will check out now!
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Nick
Full Member
Posts: 26
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Post by Nick on Jun 7, 2010 15:17:51 GMT -6
Hello All, I want to give an update as to how things are progressing for me. First I want to say THANKYOU!!! to all of you that watch this board and give hope and information to those of us unfamiliar with the little monsters that reside in our spinal cords.
As some of you may know I went for my 6 week MRI in mid may, this was after 2 previous MRIs to verify the tumor. The 6 week was ordered by my NS, Dr Morrill at Southwestern Medical Center in Dallas. The center has its own facility with 4 state of the art magnets. I took my family on vacation with the follow up visit on 6/3 to the NS after I got back.
The results of the MRI are the little ependy at C4/5 is not growing and I am to get my next MRI in 3 months and then 6 months if no change. Interestingly enough the tumor was 1mm smaller in the transverse plane. I don’t know why, either a difference in machines, radiologist, or maybe he did actually shrink which is what I like to think. I did not get to ask the Dr, this question as I received the report after the consultation. Doc gave me the choice to either go in and get em out or watch and wait.
So I am in the “watch and wait” category
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airhead2day
Full Member
Sometimes good things fall apart so better things can happen
Posts: 38
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Post by airhead2day on Jun 8, 2010 3:47:23 GMT -6
Nick, I'm also one of the wait-and-see people. My SCT was dx after an auto accident where my lower lumbar was injured. The tumor is at T12 (found by mistake). The radiologist noted right away that it was a suspected meningioma due to the borders and such. Other drs concur. That was in March 2007. For the most part I'm doing well.
One of my NS ordered a full spine scan to check elsewhere for tumors because some conditions are known to include mutliples throughout ones spine/brain. (I cant remember if you said they've scanned all of you or not.) And also, I opened my MRI disc and downloaded it to my computer and emailed a few select pics to Dr Jallo. He confirmed both of my dx's and advised the watch/wait for the SCT. Like someone else said, "he responded within hours" -Amazing man!!
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Paula
New Member
Posts: 2
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Post by Paula on Jun 26, 2010 7:40:07 GMT -6
Hello everyone I am so glad I found you all and the SCTA web site !!! My head is still spinning after my initial diagnosis three days go. I had my MRI on Monday 28th June and was called back to my Neurosurgeon's consulting rooms on Wednesday where he told me that I had a 2.1cm Intramedullary Ependymoma at C6/7. He has suggested that I have another MRI in three months to see if the tumor is growing and then possibly another MRI in six months. I have found reading everyone's stories helpful and reassuring but it's going to be hard and frustrating to play this waiting game. The search for answers to my symptoms started 2 years ago where I was referred to another Neurosurgeon who could not find a reason for the numbness on my back, on the heal of my foot and pins and needles in my hands. He assured me that there was no reason for my symptoms and sent me on my merry way. I returned to my GP in February and explained that my symptoms had increased and now included intermittent numbness on the side of my face and neck, a greater area of numbness on my back as well dizziness, problems with my eyes, difficulties at time with speech, pain in the lower back and tenderness of the intestines especially when I wake in the morning, as well as bowel and bladder issues. She referred me to a different NS, Dr Ian Rossborough, Melbourne, Australia, who I am now under the care of. When he gave me my diagnosis he said that all of the symptoms that I was experiencing from the shoulders down was due to the tumor but all the others from the shoulders up he could not explain. Can anyone let me know if they are also experiencing such symptoms and any other advice or guidance that members can give me would be much appreciated. Thank you and looking forward to your replies. Paula
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Post by Todd on Jun 26, 2010 20:06:46 GMT -6
did you have a brain MRI?
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