andys
New Member
Posts: 1
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Post by andys on Sept 10, 2015 16:11:21 GMT -6
Good afternoon everyone. Found this forum last night while frantically googling for information. So signed up today & figured to introduce myself.
My wife & I live near Pensacola, FL, in our mid-fifties and modestly early-retired. We have pretty decent health insurance. My wife had been having progressively worse back pain for the past month or so. Yesterday had an MRI. Within an hour the radiologist had called our family doctor who called us in & told us she has a tumor compressing her spinal cord at T-11 and there were some other smaller lucencies in her lumbar region. So naturally this was pretty frightening news for us. At present my wife cannot stand for more than a minute or two & has been pretty much on her back the past week or so. She has some numbness in one hip. Her lower extremity reflexes are good. She has all other bodily functions. The local MD's up to now have been pretty stingy with pain meds.
8 years ago my wife had a lumpectomy & round of radiation for breast tumor. As I recall it was stage zero ductile and no spread to lymph nodes was found. She has had clear mammograms since.
After doing a little research & consulting with some family members who are doctors, we decided to forgo the local neurosurgeons/hospitals here and got an appointment with MD Anderson Spine Center in Houston who will be getting us in Monday for an eval. She will be seeing Dr Claudio Tatsui. We have a sibling in Houston who has plenty of room for us to stay ... and MD Anderson is within our insurance plan's PPO network. So, seems to be kind of a no-brainer to go there instead of local.
So that's the intro. Hope to learn a lot from others on this forum as we go through this and will be grateful for any advice/info anyone can share with us ... as we are pretty much newbies to this.
Thanks, Andy
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Post by Matt on Sept 10, 2015 18:38:30 GMT -6
Hi there,
I was diagnosed with a spinal cord tumor(INTERMEDULLARY) from T-10 to T-12. I had severe back pain prior to the surgery and had urinary issues as well. My surgery last 6.5 hrs. It wasnt a total resection but it was about 90% removed. I spent 5 days in the ICU and then was transported to an acute rehab facility for 3 weeks. After the surgery the pain in my back was gone about 100%. There was a lot of swelling in my legs and it took me almost 3 weeks to stand with a walker. I eventually progressed to a cane and about 5 months after surgery didnt need any devices. It has been just over a year since my surgery and I'm getting closer to being back to my usual self. My left leg is weaker than my right leg and I still have some numbness although it has gotten better after surgery. My doc told me it takes about 1 year to recover from this procedure and I feel Im mostly there. I go to physical therapy 3x a week to build strength.
I'm sorry to hear about your wife and I know it's tough. I found a great neurosurgeon who was confident and compassionate. Im grateful to be walking and my urinary function returned about a month after surgery (Thank God!).
The key is to stay positive and work hard with the recovery. If you have any other specific questions I would be glad to answer them for you.
Best,
Matt
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Post by Guest on Sept 11, 2015 7:27:16 GMT -6
Matt, did you have any further treatment (radiation) for the residual tumor? What grade is the tumor and how often do you get MRI's?
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Post by dawn on Sept 12, 2015 7:15:32 GMT -6
Hello Andys, I'm glad you found this forum. I have found it very helpful and people are very supportive on it. I know this is hard time for you and your wife. I chose MD Anderson in Houston and have been very happy with the care I've received there. I see Dr Rhines, but will be having a consult with him and Dr. Tatsui on 9/30 during their patient education conference. If you don't know about the conference, here is the info. There is great information and presentations and Q&A sessions with their specialists. www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/neurosurgery/events/2015spineconferenceweb.pdfand file:///C:/Users/Tony/Downloads/2015%20Program%20Updated7%20(2).pdf I, along with others, are happy to help. I have not had surgery yet but do know that picking your medical team that is right for you is the most important thing we can do for ourselves. For what it's worth, I'm happy with MD Anderson. Dr Jallo at John Hopkins will review the MRI and give an opinion for free and he gets back to you right away. Here is his email: gjallo1@jhmi.edu
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Post by Matt on Sept 22, 2015 12:20:05 GMT -6
Matt, did you have any further treatment (radiation) for the residual tumor? What grade is the tumor and how often do you get MRI's? I was told after my surgery that I would need radiaton within 6 months of the surgery. The oncologist wanted to give me time to heal since radiation would cause fatigue and slow down my recovery. I have had 2 MRI's since my surgery and tumor has not grown. My neurosurgeon said I dont need radiation but to continue getting an MRI every 6 months to 1 year to watch it. I had a grade 2 ependamoma removed. He is not certain but he believe he cut off the blood supply to the tumor so i will not regrow. The tumor was about 4cm in length. It's possible that I may need radiation in the future but its not likely.
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Post by Matt on Sept 22, 2015 12:20:50 GMT -6
Matt, did you have any further treatment (radiation) for the residual tumor? What grade is the tumor and how often do you get MRI's? I was told after my surgery that I would need radiaton within 6 months of the surgery. The oncologist wanted to give me time to heal since radiation would cause fatigue and slow down my recovery. I have had 2 MRI's since my surgery and tumor has not grown. My neurosurgeon said I dont need radiation but to continue getting an MRI every 6 months to 1 year to watch it. I had a grade 2 ependamoma removed. He is not certain but he believe he cut off the blood supply to the tumor so i will not regrow. The tumor was about 4cm in length. It's possible that I may need radiation in the future but its not likely.
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Post by Matt on Sept 22, 2015 12:21:57 GMT -6
I was told after my surgery that I would need radiaton within 6 months of the surgery. The oncologist wanted to give me time to heal since radiation would cause fatigue and slow down my recovery. I have had 2 MRI's since my surgery and tumor has not grown. My neurosurgeon said I dont need radiation but to continue getting an MRI every 6 months to 1 year to watch it. I had a grade 2 ependamoma removed. He is not certain but he believe he cut off the blood supply to the tumor so i will not regrow. The tumor was about 4cm in length. It's possible that I may need radiation in the future but its not likely.
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Post by Matt on Sept 22, 2015 12:22:21 GMT -6
I was told after my surgery that I would need radiaton within 6 months of the surgery. The oncologist wanted to give me time to heal since radiation would cause fatigue and slow down my recovery. I have had 2 MRI's since my surgery and tumor has not grown. My neurosurgeon said I dont need radiation but to continue getting an MRI every 6 months to 1 year to watch it. I had a grade 2 ependamoma removed. He is not certain but he believe he cut off the blood supply to the tumor so i will not regrow. The tumor was about 4cm in length. It's possible that I may need radiation in the future but its not likely.
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dana
Junior Member
Posts: 6
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Post by dana on Dec 12, 2015 0:10:58 GMT -6
HI, I am also a new member. Sorry, I don't really have something to contribute to the previous subject, but I want to introduce myself. I am a 49-year-old woman who is undiagnosed and needs help. Over the past three years I have been seen by four neurologists who scratched their heads and gave me no diagnosis. Other doctors have tried to convince me that my problem is in my head. Meanwhile my symptoms have gotten a lot worse. Now, I am extremely weak: from a woman who, until half a year ago, was going five times/week at Yoga, I have become someone who can barely stand on her feet. My legs, especially, feel very strange and weak. I am only able to do physical therapy now and even that for no more than 15 minutes. My legs feel as if they are made of wood, very strange. At night--every night!--both my hands and feet are getting completely numb, and during the day I have constant weird sensations in my body--burning sensations that move all over, and a feeling as if I am being touched with a cold/wet tip in various places. I have no pain as such--well, actually I do: the muscles in my lower back, the soles of my feet and sometimes the knees--but I am in great discomfort constantly. Also, I have been dizzy since mid-April and have severe insomnia. I would greatly appreciate it if any of you could tell me if my symptoms could be a sign of a spinal cord tumor. Someone told me that I would me in much greater pain if I did have a tumor, but judging from what I read on this site it doesn't always seem to be the case. If any of you would like to send me a private message or call, please let me know.
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