…Help… Need Medical Direction…Meningioma???…

[Willie B]

… I have a dear friend who Is batteling…Meningioma…which is a form of a brain turmor…

… I believe it has three phases the first being they can do surgery …the second and third phases the outlook is not to great… I could be wrong about some of what I just posted… but it is my take on a couple of things I speed read on the net???…

…My friend is 73 years old and she looks 40… I believe 20 or 25 years ago when she was first diagnosed she had brain surgery… And has gotten by OK since then…

… Well…the tumor has reared its ugly head again …and they are saying more surgery is out of the question …because the tumor is wrapping around various tiny veins… they have also told her she can have no more radiation treatments???…
…And that nothing more can be done… I am more than heartbroken…

… From what I’m hearing it doesn’t sound like the doctors…the two oncologists she saw last week …who gave her the bad news… it doesn’t sound like they are the best in the world… there are some odd issues here …Kaiser did a CAT scan but failed to do an MRI …and they neglected to tell her until last week that there was no MRI done???… at this point I’m not sure that it matters whether there was an MRI done or not???…

… So I am hoping …that there might be a forum member …or some forum members that have had experience with …Meningioma…
… Perhaps a family member who saw a top notch specialist…or group???…
… Things are looking pretty grim right now… And any help or direction would really be appreciated…
… Thank you …thank you… thank you…

 

[monkeyswrench]

I lost a river buddy several years back. He had roughly the same prognosis from a few doctors. Same kind of deal, his tumor had been around the brain stem and encapsulated some of the capillaries near. City of Hope was able to help him out for several years though...the end was pushed off for some time, and still have some decent quality of life. He was also able to watch his young son grow a bit more, and start school

As the evil crap inside grew, his attitude and temper changed. There may have been some issues both from the illness, as well as the fear of the unknown. It can be hard to be a friend at some times, but we take the bad with the good.

Look in to City of Hope. My friend passed 10 years ago, and they were able to do things others said couldn't be done. 10 years is a long time, and some of these people are smarter than we can dream. They make progress every year, so there's always hope.

 

[Ducksquasher]

Prayers to her

 

[rrrr]

Willie, the CT scan is appropriate for investigation of soft tissue structures like the brain. It will show different contrast and information than an MRI, which is useful for bony structures like joints. An MRI is also appropriate in this case, but maybe the doctors discovered what they needed to know with the CT scan.

When a meningioma is malignant and widespread, there isn't much that radiation can do about it. Your friend's age is a complicating factor.

I know this stuff because of my million surgeries and the non-malignant brain tumor that was removed from my now 17 year old nephew a year ago this week.

I wish I could tell you something more encouraging. I'm very sorry.

 

[buck35]

Just had one removed two weeks ago.... prayers for your friend!

 

[rivermobster]

City of Hope

 

[Willie B]

… As of yet I have not contacted city of hope but that is my next phone call… I spoke with Enlo cancer treatment center in Chico California… they have the latest in technology as far as radiation machines… I was able to find out that UCLA has one of these machines… They are either called Mridian or manufactured by Mridian… The machine may also be called…ViewRay…so my next quest is to try and find out whether this latest technology in radiation would be of any use in my friends situation???…
… and thank you guys for your direction… Haven’t given up hope yet…

 

[sintax]

… As of yet I have not contacted city of hope but that is my next phone call… I spoke with Enlo cancer treatment center in Chico California… they have the latest in technology as far as radiation machines… I was able to find out that UCLA has one of these machines… They are either called Mridian or manufactured by Mridian… so my next quest is to try and find out whether this latest technology in radiation would be of any use in my friends situation???…

the problem with radiation is there is only a finite amount that they'll give a human body, typically one really heavy battle with a tumor or cancer can exhaust what they'll do.

My father had/has a tumor (not cancerous, hard stoney) that was/is growing around nerve that runs from his ear drum to his brain stem. They obviously cant operate, so they did some advanced pinpoint radiation, which helped slow the tumors growth. This was done maybe 6-8 years ago now.

This Sept he was diagnosed Hodgkin lymphoma, and they brought up radiation, but were going back and forth on if he was a candidate due to the amount he had previously. He was able to start the chemo and has done really well with it, but just something to keep in mind.

 

[timstoy]

City of Hope is where l would start.

 

[monkeyswrench]

Someone else to try and see is Dr. Raul Mena, at Providence in Burbank. He was the doctor who tried to help my Mom when other doctors had screwed up F'n royally. I can't remember the radiology clinic he used, but it was possibly in North Hollywood. That gentleman was very sharp as well...I apologize, I can't for the life of me remember his name!

Dr. Mena was great though. He was the kind of doctor that explained everything in normal speak, and told you pros and cons of different treatments. He also understood how hard decisions could be, and wanted people to speak with friends and family, or have them there as well.

I should have thought about this earlier. It's fairly close for you. Look up his name, quite a bit written about him...most of it over my head. I can attest to him being a good human.

 

[Willie B]

… My dear friends sister… just sent me a text saying that the tumor is wrapping itself around the carotid artery… she worded it as the vein/carotid artery was running down inside the tumor… And apparently this is having an affect the optic nerve???…
… The sisters are waiting on a referral …hopefully to UCLA… not sure if this is because UCLA does have the new Mridian radiation machine???…
… My dear friend with the Meningioma is in fact my old girlfriend from 1964 who I have posted about before…We have been very close friends ever since…

 

[monkeyswrench]

Hope for the best, pray for the best, but most importantly, continue being the best friend you can.

 

[92562]

At UCLA I would ask to see Dr. Linda Liau. She is a colleague of mine performed a miracle for a good friend 12 years ago who was in a similar situation. She is the Chair of the Neurosurgery department.

 

[Willie B]

At UCLA I would ask to see Dr. Linda Liau. She is a colleague of mine performed a miracle for a good friend 12 years ago who was in a similar situation. She is the Chair of the Neurosurgery department.

… Thank you very much… this information has been passed along to her sister…

 

[Willie B]

… I am not very skilled in the world of prayers… But I guess it would not hurt to ask for prayers and posative thoughts for my dear friend…Helen… she definitely deserves them…
… Everything seemed fine just before Christmas???…

 

[monkeyswrench]

Positive energy is positive energy, no matter what or who you believe in.

 

[Willie B]

Positive energy is positive energy, no matter what or who you believe in.

… oh so very true…

 

[rrrr]

Positive energy is positive energy, no matter what or who you believe in.

I'm sending mine.

 

[dave29]

Someone else to try and see is Dr. Raul Mena, at Providence in Burbank. He was the doctor who tried to help my Mom when other doctors had screwed up F'n royally. I can't remember the radiology clinic he used, but it was possibly in North Hollywood. That gentleman was very sharp as well...I apologize, I can't for the life of me remember his name!

Dr. Mena was great though. He was the kind of doctor that explained everything in normal speak, and told you pros and cons of different treatments. He also understood how hard decisions could be, and wanted people to speak with friends and family, or have them there as well.

I should have thought about this earlier. It's fairly close for you. Look up his name, quite a bit written about him...most of it over my head. I can attest to him being a good human.

Raul is terrific!!!!! I served with him on the board of St Josephs. If you are going to see him you better call today. He is retiring in March. Raul is the head of the Roy and Patricia Disney Cancer center at St,. Josephs in Burbank.
BTW, he saved my wife's life from breast cancer 20 years ago.
On radiology, Raul may have recommended Dr Chris Rose. Possibly one of the finest radiologists practicing. He was located in Beverly Hills but was originally practicing in Burbank at St. Joe's. I don't know if he is still working.

 

[monkeyswrench]

Raul is terrific!!!!! I served with him on the board of St Josephs. If you are going to see him you better call today. He is retiring in March. Raul is the head of the Roy and Patricia Disney Cancer center at St,. Josephs in Burbank.
BTW, he saved my wife's life from breast cancer 20 years ago.

Sad that he is retiring, but good for him. He did a lot of good for a lot of people. Has to be hard though, to do that kind of work and still be as nice as he was.
My "job" is nowhere near as stressful, nor meaningful, and my temperament sucks in comparison...the man is a saint.

 

[Long Way Home]

Check for CyberKnife radiation machine with her doctor, it Saved my wife’ life , not every hospital has them.

CyberKnife - https://cyberknife.com/cyberknife-how-it-works/​

 

[Willie B]

Check for CyberKnife radiation machine with her doctor, it Saved my wife’ life , not every hospital has them.

CyberKnife - https://cyberknife.com/cyberknife-how-it-works/​

… Thank you …thank you ..:thank you…

… As of this point I am not sure if the Cyber Knife radiation machine is a more recent but similar machine to the Mridian ViewRay radiation machine???…

… I just made the initial phone call to Cyber Knife after studying them….some on the Internet… Cyber Knife will be giving Helen’s sister a call either this afternoon or Monday…

… Helen and her sister Karen came over last night… So the three of us could somewhat get on the same page… Helen appeared pretty good… until the headache from the tumor set in…ouch…
… so far she has been offered Tylenol for the headaches from the brain tumor… that didn’t seem quite right because of the immense pain she is sometimes in???…
… her tumor is right behind her forehead in between her eyes… which is where her neurosurgery was done 20 years ago…when they removed a piece of the tumor…and started radiation…

… The doctor that had given them the doom and gloom outlook… but was supposed to give them a referral to another doctor… So far has done nothing???…
… This doctor had a CD of either her CAT scan or her MRI… Did not have with him any other of her medical records that the girls could see…he is the one who told her she had already had enough radiation in her life… not sure how he established this… her radiation treatments were 20 years ago… I don’t know if that time span has any bearing as to whether she could now receive additional radiation???…

…Helens surgery and radiation treatments 20 years ago were done at UCLA…

…Got my fingers crossed…and again thank you everyone…
…

 

[dave29]

MD Anderson in Texas is always rated #1 for cancer. You might make a call.

 

[Long Way Home]

You’re a good friend To go on this journey with them, my wife was in the same boat she had blanket radiation and they said that was enough for a lifetime, when the cancer came back this new doctor (now retired) said this Machine would take care of it , he said that they could split a hair with the laser and not hit any other organs , and it worked, I hope it works for you best of luck.

 

[Willie B]

… Great news… My old girlfriend and long time dear friend Helen has had brain surgery… The input from the RDP members was amazing… I was referred to CyberKnife by a member… My dear friend Helen was examined by them and referred to a neurosurgeon in Santa Monica… His name escapes me for the moment…

… any way a couple of weeks ago this neurosurgeon made a slice right at Helen’s left eyebrow and then drilled a hole through her skull and microscopicly was able to go in and remove the undesired tissue…

… she didn’t really seem like there was much wrong with her before the surgery but now after the surgery I had forgotten how smart she really was… A big thumbs up to Helen and her neurosurgeon and especially to her sister Karen who stayed on top of this program all the way through… this has been a rough one…

… As soon as her blackeye goes away you won’t even be able to tell that there was any surgery…atta girl Helen….

 

[HTTP404]

That is fricking great! So happy to hear things are going in the right direction for your friend. Say hi for me.

 

[coolchange]

Right on Willie. Some good news for a change!

 

[Dan Lorenze]

Great news!

 

[Willie B]

That is fricking great! So happy to hear things are going in the right direction for your friend. Say hi for me.

… I will do that for sure …as she and her sister will be dropping by my house about 8 PM tonight…

… I asked her what her neurosurgeon’s name was and she told me …Garni Barkhoudarian…at Pacific Neuroscience Institute in Sana Monica Ca… this guy gets a triple thumbs up…

 

[musicFunsun]

So great!! We have a long time family friend with brain tumors & a stoke & many other maladies (super strong women dealing with stenosis now) so it’s good to know of others who have a great outcome.

 

[Havasu blue label]

Great news

 

[rivermobster]

Right on Willie. Some good news for a change!

Yep. Excellent news.

 

[HNL2LHC]

What great news!!!! I was shocked to see that I missed the thread. My wife had a lime sized tumor removed 3 years ago. Spent several months at UCSF for treatments and met many with different types of challenges. Everything is stable for my wife. Just learning to Live with the current ability. If you ever have any questions please feel free to reach out. It is a tough journey but there are some many amazing surgeons out there with skills that can change the direction of one’s life. Tell HElen that she is a rock star And to enjoy each day to the fullest.

 

[Willie B]

… Helen and her sister Karen just left my house we had a super great visit… It’s just hard to believe that two weeks or so ago…a neurosurgeon had a drill bit on Helen’s eyebrow…yikes…
… Both girls look really good… But you could see that the stress on Helen’s sister Karen’s face …from having to monitor everything all the way through..it has taken a toll… Now she can get back to taking care of her horses instead of her sister…lol…

 

[LuauLounge]

Great news…

 

[OLDRAAT]

Glad everything worked out Willie.

 

[FreeBird236]

Happy for you and your friends, always a great way to start the morning.

 

[Willie B]

Raul is terrific!!!!! I served with him on the board of St Josephs. If you are going to see him you better call today. He is retiring in March. Raul is the head of the Roy and Patricia Disney Cancer center at St,. Josephs in Burbank.
BTW, he saved my wife's life from breast cancer 20 years ago.
On radiology, Raul may have recommended Dr Chris Rose. Possibly one of the finest radiologists practicing. He was located in Beverly Hills but was originally practicing in Burbank at St. Joe's. I don't know if he is still working.

… sounds like the sisters first consulted with cyber knife… Then we’re referred to Saint Joseph in Burbank where they did some consultation and from there I think they were referred to the doctor in Santa Monica who actually did the surgery… I’m still a little mixed up the sequence of neurosurgeons seen by them???…

 

[dave29]

Great news and a great outcome. So glad she is going to be ok.

 

[92562]

That is great news! I was just thinking about this the other day and was really hoping and praying for this outcome!

 

[Ladsm]

Thats great news, My wife had that a few years ago and had the brain surgery. I always remind her that she has a hole in her head when she does something stupid. My other friend got it and it took his life quickly.