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Post by 8338 on Sept 6, 2008 7:57:54 GMT -6
Hi Sara,
I agree with Linda, contact Dr. Jallo.
Welcome to our group, we are all here for each other.
Barb
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Post by susan on Sept 6, 2008 18:51:49 GMT -6
Oh Sara,
I wish your sister would reconsider and go to a medical center in the city! I have a sister too and I know how much it would hurt to see her be sick or worse.
My mom lives in another state and insists on getting medical treatment in her rural area. She said to me "not everyone has to get treatment in a big university medical center" and I said "just the ones that want to live!"
I really think your sister needs to get evaluated in a medical center. She is too young to risk anything else. They have access to so many newer treatments and cutting edge therapies.
I know it is her decision and you want to support her in whatever she decides, but I wish she would reconsider.
Smaller centers are OK for basic things, but her case sounds way more complicated. I went to a large medical center with a busy neurosurgical service and my doctor told me they only see about 15 primary spinal cord tumors a year, they are that rare. It is a matter of numbers, the more cases a center sees, the more they know about how to treat the condition. Your sister has a lot of years to live and she needs the best outcome possible for both of her issues.
Susan
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Post by saramomofmany on Sept 7, 2008 21:24:32 GMT -6
Hi Sara, I also live in the Twin Cities metro area. I had a subependymoma 90 percent removed that ran from C5 to T3 with a syrinx at C4. I was never told that it was to big for surgery. I had a very good surgeon at the University of Minnesota. Unfortunately he has backed up his bags and headed for Chicago so I can't recommend him. But there is a surgeon at Abbott Northwestern, his name is Dr. Nagib, who would be very good person to talk to. I'am very curious, where is your sister being seen? Best wishes to you and your sister. Tyler Hi Tyler, Thanks for your response & recommendation. I'm not sure which clinic my sister was seen at, but the Neurosurgeon she had met with uses Abbott Northwestern for his surgeries. Take care, Sara |
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Post by saramomofmany on Sept 7, 2008 21:38:53 GMT -6
Oh Sara, I wish your sister would reconsider and go to a medical center in the city! I have a sister too and I know how much it would hurt to see her be sick or worse. My mom lives in another state and insists on getting medical treatment in her rural area. She said to me "not everyone has to get treatment in a big university medical center" and I said "just the ones that want to live!" I really think your sister needs to get evaluated in a medical center. She is too young to risk anything else. They have access to so many newer treatments and cutting edge therapies. I know it is her decision and you want to support her in whatever she decides, but I wish she would reconsider. Smaller centers are OK for basic things, but her case sounds way more complicated. I went to a large medical center with a busy neurosurgical service and my doctor told me they only see about 15 primary spinal cord tumors a year, they are that rare. It is a matter of numbers, the more cases a center sees, the more they know about how to treat the condition. Your sister has a lot of years to live and she needs the best outcome possible for both of her issues. Susan Hi Susan, The Neurosurgeon my sister saw is in Minneapolis, and practices at Abbott Northwestern, which is rated #35 in Neurosurgery of hospitals in the U.S. The Neurosurgeon said he was very comfortable with doing the surgery(when they first talked in the beginning and had planned to do the spinal cord surgery). I'm sorry if it seemed like I was saying she was going to a small rural hospital. I have 5 kids, so I'm pretty well constantly typing with a little one on my lap or interupted, so I might have lost my train of thought before!! ;D Thanks, Sara |
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Post by susan on Sept 8, 2008 6:13:06 GMT -6
That makes me feel better. I still think she should think about a second opinion, on both issues, especially since she is so young.
Although, maybe they decided the spinal cord tumor can wait until they treat the salivary gland cancer.
Are they going to continue 6 month surveillance MRIs of the spine?
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Post by saramomofmany on Sept 8, 2008 10:03:33 GMT -6
That makes me feel better. I still think she should think about a second opinion, on both issues, especially since she is so young. Although, maybe they decided the spinal cord tumor can wait until they treat the salivary gland cancer. Are they going to continue 6 month surveillance MRIs of the spine? Hi again. From what I understand, they will do another scan I thought I heard in 2 months(of the spine). She is also supposed to keep an eye on her symptoms. They are hoping the radiation will shrink the spinal cord tumor enough to relieve much of her original symptoms and hopefully give her relief for many years. If her symptoms come back she is supposed to contact them right away so they can reevaluate her situation. I think because the salivary gland tumor was a high grade, aggressive cancer they felt that needed the #1 priority. The Neurosurgeon's best guess is that the spinal cord tumor is a slow growing tumor. I guess it's just so odd that they go from we're doing surgery on her spinal cord, to no, we'll do radiation and maybe buy her 10 years before having to do sct surgery!?! Apparently, the Neurosurgeon and the Radiologist Oncologist, Medical Oncologist and NeuroOncologist(if I got all the names right) consulted together and with several other doctors to come up with this plan of treatment. I believe it was the NeruoOncologist that said the tumor was too big to do surgery on, and that her likelihood of getting paralized would be too great because it was so big!?! (My Mom seems to think they were trying to say it was almost positive she would get paralized if she had surgery right now...and I wonder how can they possibly know until they get in there and see what it is like inside? ) Who knows, and I definately hope this isn't the case, but maybe they think she won't survive the salivary gland cancer so they aren't as worried about the spinal cord. I don't know. I've tried to encourage a second opinion, but apparently she's set that she's going with what these Drs say. I'm not sure if I can talk her into at least consulting with Dr. Jallo long distance...I don't know how he would get her MRI's to look at(wonder if they can be sent through the email as they gave her a disk with them on there). Sara |
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