Craniotomy is 2/21/2025. Could use some encouraging words.

Posted by mlew @mlew, Feb 16 12:16pm

My meningioma was an incidental find this past December. Details: an extra-axial mass in the midline to the left superior and posterior parasellar region measuring 15 x 14 x 11 mm. Still small but located in a tricky area. Was able to get in pretty quickly with Dr. Laligam Sekhar at Harborview Hospital, Seattle. He gave me the option: watch and wait or go ahead and remove it since it is so close to a nerve and artery. At the moment, it is just touching the basilar artery. Given my age, 57, and excellent health, he recommended removing it. I know that Dr. Sekhar is one of if not the best neurosurgeon for the job, but I'm still a nervous wreck and could use some pep talks, please and thanks!

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

@radmom

I’m wondering how deep into the brain tissue was your meningioma? I was told 5 yrs ago that mine was too difficult to get to w surgery but now it has grown larger. Does that make it any easier to reach now for removing it?
I’m in Texas. How do I research to find a great surgeon? Not sure where to begin. Could use suggestions please.

Jump to this post

You want an academic center. I was operated at UCLA, a slick tem. MG Anderson would be a good place to start. Mayos also has a talented staff.

REPLY

The inside of the brain does not have pain causing nerves. The scalp is the issue. My surgeon used local anesthetic on the wound site at the start of surgery and repeated it as they closed. I have no fear of further surgery if it is needed. My surgery took 7.5 hours, so all about a surgeon who is n no hurry and works meticulously

REPLY
@mkoch

M.D. Anderson clinic in Texas is renowned as one of the best cancer clinics in the U.S. Given that, it would seem they have excellent neurosurgeons who operate on both cancerous tumors, and meningiomas, which are benign tumors.( 97% of the time) I had a meningioma in the sphenoid wing of my brain and 2 doctors said that nobody would ever operate in that area of the brain as it was too dangerous. Then I saw a neurosurgeon at UCSF who said, "No problem, I do one or two a week in that location." I had the surgery a little over a year ago. I feel fine. The hysterectomy I had over 20 years ago was far worse than the craniotomy. Unfortunately, bigger doesn't necessarily mean better. Sometimes as the meningioma grows bigger it will wrap around arteries and/or other structures which makes its removal more difficult. Were you having symptoms 5 years ago? If you were, it seems radiation would have been offered to stop the growth. Perhaps you have been on the watch-and-wait protocol, leaving things alone and waiting to see if will grow. But now that you know it is growing you need to get a referral to meet with a neurosurgeon.

Jump to this post

I had stereotactic radiation which was supposed to zap the tumor preventing growth however here we are 5 years later and it has grown bigger. I have had severe dizziness and headaches that doctors continue to claim are not related. I never had these symptoms previously.

REPLY

How is recovery going?

REPLY

Where is USCF located, needing a second opinion

REPLY
@amazingsw

Where is USCF located, needing a second opinion

Jump to this post

If you mean UCSF it's in San Francisco. (University of Calif., San Francisco) It's not downtown in the craziness of the city, but more of a residential area surrounds it. Stanford Neuro Center is about 40 minutes south of San Francisco. That would be another good option. Though UCSF is rated a bit higher in neurosurgery. If you fly into SFO (San Francisco Airport) taking an uber would be just about equal distance to either one. If you flew in through SJC (San Jose) it would be about the same 30 minute drive to Stanford. Second opinions are really important so I hope you find a neurosurgery department that is reputable and not too inconvenient.

REPLY
@radmom

I had stereotactic radiation which was supposed to zap the tumor preventing growth however here we are 5 years later and it has grown bigger. I have had severe dizziness and headaches that doctors continue to claim are not related. I never had these symptoms previously.

Jump to this post

Radmom: What recent scan did you have that shows it has grown since the stereotactic radiation? I had a CT scan in 2017 for chronic sinus issues, left sided forehead tenderness,
(it was suspected I had giant cell arteritis-something one doesn't want) blocked ear sensation, and intermittant double vision. The radiologist's report just said "chronic sinusitis." 5 years later a neurologist I consulted looked up the CT scan from 5 years prior and found a meningioma that had not been cited by the radiologist. Yes, I had "chronic sinusitis" but that was because of the presence of the uncited meningioma causing the inflammation. My point is, since the doctors keep telling you that the meningioma that was radiated is not causing your symptoms, perhaps there is another meningioma that is causing them. Probably not, but it did happen to me. Radiologists read a lot of scans and I can see how maybe something is overlooked. I've had one meningioma removed but have since found out I also have 2 others. If you develop one, for whatever reason, you're more inclined to develop others. Keep pushing for answers as I don't want you to suffer for 5 years like I did.

REPLY
@mkoch

If you mean UCSF it's in San Francisco. (University of Calif., San Francisco) It's not downtown in the craziness of the city, but more of a residential area surrounds it. Stanford Neuro Center is about 40 minutes south of San Francisco. That would be another good option. Though UCSF is rated a bit higher in neurosurgery. If you fly into SFO (San Francisco Airport) taking an uber would be just about equal distance to either one. If you flew in through SJC (San Jose) it would be about the same 30 minute drive to Stanford. Second opinions are really important so I hope you find a neurosurgery department that is reputable and not too inconvenient.

Jump to this post

Thanks for your reply ! I’m in GA so that would definitely be difficult. I’m so conflicted!!

REPLY
@amazingsw

Thanks for your reply ! I’m in GA so that would definitely be difficult. I’m so conflicted!!

Jump to this post

amazing: I'm voting for Mayo Clinic in Jacksonville, Florida, given that you live in Georgia. Wishing you the best in your pursuit of quality healthcare.

REPLY

If you choose Mayo Clinic in Jacksonville, FL, be sure to ask if they accept your insurance. Mayo Clinic in Rochester, MN accepted my insurance, whereas Mayo Clinic in Jacksonville did not. I had my meningioma treated at Mayo in Rochester by proton therapy radiation treatment.

REPLY
Please sign in or register to post a reply.