ken
Junior Member
Posts: 6
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Post by ken on Feb 2, 2016 18:13:28 GMT -6
Ya of course. Dr. Mccormick at Columbia Presbyterian in New York. It doesn't seem like they have an expert at UCLA or USC. The barrow institute in Arizona also has top spinal doctors that you could check out. I have been asking on this forum if anyone else knows of the top surgeons but the only response I have received is Dr. Jallo at John's Hopkins.
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cd
New Member
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Post by cd on Feb 2, 2016 18:52:46 GMT -6
Hi Ken, I have seen Dr. Jallo at Johns Hopkins and Dr. Rhines at Md Anderson for consults. I thought they were both good. One of my local drs. mentioned Dr. McCormick too. Sounds like you will be in good hands.
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moa
Junior Member
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Post by moa on Feb 2, 2016 23:20:25 GMT -6
I've been told Dr. Johnson at Cedars and Dr. McCormick at Columbia. Haven't heard a specific name for Barrow.
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Post by dmdgood on Feb 9, 2016 1:09:13 GMT -6
Dear Mac. I just had my 6 monthly MRI, and the news is great. I can identify with that elated feeling that you had following your last result. I hope that it lasts for a long time to come! The news is that my lesion has reduced in size. Only by a few millimetres, but going in the right direction as far as I'm concerned! The reason that this is possible is that my lesion is a cyst, and my NS hypothesises that it is the fluid within it that has been absorbed. My hope is that it will involute, but I have only heard of that happening in relation to people that have neurofibromatosis (and only very rarely too), which I don't have, but there's no harm in hoping (that it will involute that is, not that I have neurofibromatosis!). Nevertheless, I am OK for now. The reduction in size has also alleviated some of my symptoms. I feel noticeably better than when I was diagnosed a year ago. I had put that down to me learning to live with my symptoms, but there are symptoms like nausea and dizziness that I can't even remember when I had last, which is a great thing.
As I'm writing this I am feeling bad about being excited about this news as I fear that I am setting myself up for hitting rock bottom if my symptoms exacerbate or this thing starts growing. But I guess that one thing I have learned from this condition is to take what good news you can get and feel happy about it, so that's what I'm going to do!
Although the jury is still out about the nature of the lesion, it is looking more likely that it is an ependymoma - it is clearly in the centre of my spinal cord.
My NS tends to focus on the negative, and he still talks about "when" I have surgery rather than "if", but I caught him today say "if and when", which I felt super excited about. I may be able to live with this thing for a while to come!
Thank you for your support, and I hope that you are doing well with your DEX-free body.
DM
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mac
Junior Member
Posts: 10
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Post by mac on Feb 10, 2016 6:38:18 GMT -6
DM, That's great news! You should definitely be very happy with those results.Hopefully it will continue to shrink and all your symptoms disappear. Hopefully surgery is just and if and not ever a when. I am still enjoying my positive results and i hope you can continue to enjoy yours for weeks to come. I am with you on the feeling that your setting yourself up. I am usually the one who likes to play the devils advocate but i have since changed the way i look at things. I now am going to take everything positive i can and use that energy to live a positive life and enjoy every second. I wish you the best of luck for the future and hope everything continues in a positive direction. If anything changes or if i have anything new to share i definitely will and i'm sure you will do the same. Until then enjoy your positive results.
MAC
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moa
Junior Member
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Post by moa on Feb 15, 2016 16:17:38 GMT -6
Appreciate everyone sharing their experiences here. Been pretty in a pretty bad place the last few weeks after looking at all the literature on astrocytomas, particularly with respect to survival rates, so it's good to hear others having decent outcomes.
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Post by funnywalk on May 23, 2016 6:36:40 GMT -6
Hi there Moa. To add to the wisdom you've already had from the community, first of all congratulations on acquiring one of the rarest tumours out there. We SCT people are a small but highly intelligent band! Your prognosis sounds really good and positive. Astrocytomas can be very hard to tackle. If it has 'edges' then it can be debulked or removed. And your motor nerves seem to be fine. I hope you will find you can live with this; I just accept that mine is there for the rest of my life [could not be removed, see notes at foot of post] but even though mine is completely blocking my spinal cord at T9-12 I can still walk and be myself. My worst problems are neuropathic pain and lack of balance. After four years I know that it hasn't grown at all, thanks to radiotherapy. In ten years, who knows? Not even my consultant knows. So I wake up each day and do whatever my body and mind let me - and that covers a whole lot of activities. Very good luck, Moa. Stay in touch and let us know how you're getting on. I've had great support and advice from this group. Blessings, FW.
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