Newbie!!

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Newbie!!

Postby Frannie » Wed Oct 10, 2012 3:34 pm

Hi everyone,
I am very new to this site and feeling quite lost at the moment.
I got diagnosed with Migraines when I was about 16yrs old, now 46yrs old. Have had various symptoms all my life but nothing that got put together. Main things were the "whoom whoom " in my head on straining, coughing etc. Thought everyone had this!
So after some bizarre incidents last year I had a CT scan and a moderately large brain tumour was diagnosed in my left temporal lobe. Had this removed via Craniotomy November last year, but headaches persisted. So onmy first post-op MRI a Chiari was diagnosed. Had full Brain and Spine MRI done 3 weeks ago and met with Neurosurgeon the following day. Have appt with Neurologist tomorrow for sensory testing. Neurosurgeon told me it is serious, but at present we are just setting benchmarks. Got the written report through yesterday and on reading it I have scared myself. Think it is more serious than the N is letting on. "Dysplastic cerebellar tonsils projecting 14mm below foramen magnum. Near complete effacement of CSF on T2W imaging and up to 9mm diameter syrinx extending from C3 to T9".
Would love some input from those of you who are living it.
Thank you so much for taking the time to read this...I am a little overwhelmed at the moment. Thought a brain tumour was the worst I would ever have to deal with.
Frannie
Frannie
 
Posts: 3
Joined: Fri Mar 23, 2012 5:59 pm

Re: Newbie!!

Postby pmaxwell » Thu Oct 11, 2012 10:13 am

Hi Frannie, I know you will find good support on the message board and other ASAP outlets like facebook. The good news is that many find relief of symptoms through decompression surgery. I think it is important to receive a full diagnostic evaluation of your condition since there can be other things going on besides the Chiari and syringomyelia. Surgery needs to be tailored to the individual so they need to know everything that could be responsible. Finding a neurosurgeon who has treated hundreds of Chiari patients is important especially since you have already had surgery to remove the tumor. They will want to make sure scar tissue is not a culprit aggravating the Chiari.

Hey you have already survived brain surgery to remove the tumor, you are a lot tougher than you give yourself credit.

best wishes,

Patricia
Together We Can...
pmaxwell
 
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Joined: Mon Jan 31, 2011 2:20 pm

Re: Newbie!!

Postby Pugster » Sun Nov 04, 2012 8:17 pm

I am a Newbie also. Found out I had developed a syrinx in April after a follow-up MRI for arachnoiditis. The syrinx is 6 x 7 x 30 mm located at T8 and T9. I developed arachnoiditis in 2009 following a ruptured brain aneurysm. The neurosurgeon who performed my craniotomy in 2009 is the only doctor I have seen. Does it help to see a neurologist as well? The NS is in Austin, Texas which is a two hour drive from where I now live. Can anyone recommend a doctor in San Antonio?

Thanks,

Melissa
Pugster
 
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Joined: Mon Aug 06, 2012 9:19 am


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