1. < Brain Tumor

Clivus meningioma brain tumor

Posted by isab1980 @isab1980, May 14 4:39am

April 30th is when my mass came to light after over a month of excruciating headache. The tumor is putting significant pressure on my brainstem. My consultation with Neuro is today in Toronto. I know they said they cant take it out in one shot as it is too big. Anyone have experience with this? Im very nervous and not sure what questions to ask. This was a 6 hours drive for me to come to Toronto with my 4 kids, i hope recuperation isn't too intense as i am a single mom 😬

Interested in more discussions like this? Go to the Brain Tumor Support Group.

mkoch | @mkoch | May 15 1:39pm

I am so sorry to hear about your diagnosis. My girls were on their own when I had to deal with meningioma issues so my heart goes out to moms with kids still at home having to negotiate this. I just saw this post and it indicates it is a day old, and you are seeing the neuro doc today. So please let us know how the consultation went. Are they suggesting taking part of it out and radiating the rest? I've never heard of a clival meningioma that develops in the bony structure at the base of the skull. I hope you got answers and reassurance at your appt.

REPLY
arb29 | @arb29 | May 15 9:27pm

@isab1980 @mkoch
I was also recently diagnosed with a clivus meningioma. It is being suggested that we do surgery to get as much out as safely possible and then follow with radiation. Scary risks associated with the surgery.

REPLY
isab1980 | @isab1980 | May 16 10:25pm

I was told they will remove as much as they can, but it will be a tricky and risky procedure. Radiation is not an option because of where the tumor is. 95% survival rate but ALOT of other risks unfortunately surgery is the only option. 1 week in ICU, 2 weeks in hospital, 3-6 month rehab if all goes well.

REPLY
3 replies
arb29 | @arb29 | May 16 11:31pm
In reply to @isab1980 "I was told they will remove as much as they can, but it will be a..." + (show)
@isab1980

I was told they will remove as much as they can, but it will be a tricky and risky procedure. Radiation is not an option because of where the tumor is. 95% survival rate but ALOT of other risks unfortunately surgery is the only option. 1 week in ICU, 2 weeks in hospital, 3-6 month rehab if all goes well.

Jump to this post

That sounds intense. I don’t think I’m close enough yet to the actual surgery to have those details, but yes I’m told the risks are significant, with 10% odds of a transient impact, 5% permanent impact. When will you have the survey? And where?

REPLY
jasonl1012 | @jasonl1012 | May 17 9:01am
In reply to @isab1980 "I was told they will remove as much as they can, but it will be a..." + (show)
@isab1980

I was told they will remove as much as they can, but it will be a tricky and risky procedure. Radiation is not an option because of where the tumor is. 95% survival rate but ALOT of other risks unfortunately surgery is the only option. 1 week in ICU, 2 weeks in hospital, 3-6 month rehab if all goes well.

Jump to this post

@isab1980 @arb29 I was diagnosed with an meningioma and a superior posterior clivus last May. I had excision through the sphenoid sinus approach. They told me they could get 75% and the rest would have to be treated with radiation. This was because it was pressing against the carotid arteries as well as the optic and my pituitary gland. He stated as too risky to try to remove the tumor wrapped around the internal carotid arteries so he left a cuff of tumor around them.On my follow up postop exam, the surgeon said he was able to remove 95%. My surgery was nine hours long and I was in the hospital overnight three nights. I had double vision for a month. Just stay positive. be patient with yourself after surgery as it takes a while to get back to normal self. You guys are going to be fine. You’ve got this!

REPLY
1 reply
arb29 | @arb29 | May 17 9:06am

@jasonl1012 Thank you for sharing your story! Reassuring.

REPLY
isab1980 | @isab1980 | May 18 8:06pm
In reply to @jasonl1012 "@isab1980 @arb29 I was diagnosed with an meningioma and a superior posterior clivus last May. I..." + (show)
@jasonl1012

@isab1980 @arb29 I was diagnosed with an meningioma and a superior posterior clivus last May. I had excision through the sphenoid sinus approach. They told me they could get 75% and the rest would have to be treated with radiation. This was because it was pressing against the carotid arteries as well as the optic and my pituitary gland. He stated as too risky to try to remove the tumor wrapped around the internal carotid arteries so he left a cuff of tumor around them.On my follow up postop exam, the surgeon said he was able to remove 95%. My surgery was nine hours long and I was in the hospital overnight three nights. I had double vision for a month. Just stay positive. be patient with yourself after surgery as it takes a while to get back to normal self. You guys are going to be fine. You’ve got this!

Jump to this post

Thankbyou fornsharing....thats's amazing ❤️

REPLY
zaguanes108 | @zaguanes108 | May 19 7:37am

I was diagnosed with a complex meningioma in 2005. Had surgery at the Barrow Neurological Institute followed by cyberknife treatments. The course of treatment worked well although over the years I have had some deterioration in my visual field in one eye and hearing loss (now profound) in the ear on the same side. This is considered the result of the cyberknife radiation treatment rather than any tumor regrowth.
I too had some pretty strange visual after-effects from the surgery & cyberknife which lasted about 6-8 weeks but did in the end resolve. I also had to take steroids for a number of weeks during my recovery period to stave off inflammation.
Hope this info helps...
treatment & recovery are inconvenient but things do smoothe out. Oh, additionally in my case I had (expected) short term memory loss problems that took me at least 6 months to resolve.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 27 1:48pm
In reply to @isab1980 "I was told they will remove as much as they can, but it will be a..." + (show)
@isab1980

I was told they will remove as much as they can, but it will be a tricky and risky procedure. Radiation is not an option because of where the tumor is. 95% survival rate but ALOT of other risks unfortunately surgery is the only option. 1 week in ICU, 2 weeks in hospital, 3-6 month rehab if all goes well.

Jump to this post

@isab1980, when will you have surgery?

REPLY
arb29 | @arb29 | May 28 3:27pm
In reply to @zaguanes108 "I was diagnosed with a complex meningioma in 2005. Had surgery at the Barrow Neurological Institute..." + (show)
@zaguanes108

I was diagnosed with a complex meningioma in 2005. Had surgery at the Barrow Neurological Institute followed by cyberknife treatments. The course of treatment worked well although over the years I have had some deterioration in my visual field in one eye and hearing loss (now profound) in the ear on the same side. This is considered the result of the cyberknife radiation treatment rather than any tumor regrowth.
I too had some pretty strange visual after-effects from the surgery & cyberknife which lasted about 6-8 weeks but did in the end resolve. I also had to take steroids for a number of weeks during my recovery period to stave off inflammation.
Hope this info helps...
treatment & recovery are inconvenient but things do smoothe out. Oh, additionally in my case I had (expected) short term memory loss problems that took me at least 6 months to resolve.

Jump to this post

Thanks for sharing. Sounds daunting… but you managed through it. That’s a long recovery.

REPLY
Please sign in or register to post a reply.