new here

[jane]

Hi,

I have just found this forum.

I had a cavernous heamangioma removed from c4 in sept 2005, post op i was completly paralised and now have limited mobility and sensation, however, i can walk short distances. recently my neurosurgeon has suggested that i may need a further op as i am deteriouraing and there are still evidence on mri of more heamangioma with possible bleed.

obviously i am concerned as i dont' want to be any worse and the surgery is risky and having already not had a good outcome from surgery i am less reluctant.

i am now starting to get pain in my neck = aching pain rather than muscular, and my gp wants me to go back to consultant.

does anyone else have any kind of experience

thanks
jane

[qhcrazy]

First of all, welcome here and we're glad you joined! I wish I could have some advice for you about your condition. My tumor was an ependymoma, so I'm not familiar with what you have. But, I can offer lots of prayers and support!!!! This forum has been a wealth of information and support for me during my whole ordeal and we can ALL relate to one another in some form or another. Please keep us posted on your condition.

[Joel]

Like in many other threads, I will say that you should start with Jallo at Hopkins. Send him an email, ask him to look at your case, then go from there. But I think he is always the best place to start.
Joel

[Rena]

I'm new here too. I had a 5.5cm intramedulary ependymoma from middle of L3 to middle of L4. I had surgery on 6/4 in Asheville, NC. The surgeon reported that he "got it all".
My mother had an intradural tumor in the late 1960's that
was on L4 and was excised. She had a complete recovery
and lived to 82 years old.
Currently, I've got numbness on my right "butt cheek" and
down into my thigh. Some tingling in my farthest right toes.
I'm done with PT for now....I'm on my own at the gym and
have worked up to 30 min on the eliptical, along with doing
core strength exercises. So far, I've done great and it sure
nice to get a night's sleep. For a year and a half, I was scared
to go to bed, knowing that I'd get the searing pain during
the middle of the night. Other than getting tired quickly...
(I see others reporting that their legs feel "heavy" -- I can
relate to that) I feel so much better than I did prior to surgery.
I have a followup MRI in September and we'll go from there.