RDP Braintrust Challenge - CEREBELLUM EDITION

[HNL2LHC]

I have seen many threads in which it is clear that the braintrust is deep here at RDP. Well I hope that my question can prove it is deeper than anyone had thought.

I am looking for advise from anyone that might have insight in the medical field. I have a family member that we just found out they have a brain tumor and we are trying to navigate the health care system. Any advise would be greatly apriciated.

I have no knowledge or exposure to medical terms or proceedures so bear with me. I am just trying to find the way to a solution anyway possible. I can give additional information but thought it would be better via PM.

The area of help or concern is with a brain tumor, Neurologist and Neurosurgeon.
Who and where is the best place to start for help on the mainland?

Thanks in advance!!!

 

[ArizonaKevin]

Barrow Neurological Institute is one of the best neuro facilities. It's where Mohammed Ali had all of his parkinsons treatment and research done late in his life. I believe his estate donated a substantial sum to them as well.

 

[Riverbottom]

Barrow Neurological Institute is one of the best neuro facilities. It's where Mohammed Ali had all of his parkinsons treatment and research done late in his life. I believe his estate donated a substantial sum to them as well.

This is where I would want to go. Probably others, but from what I know Barrow's is the best.

 

[Done-it-again]

No insight here. But Loma Linda Hospital is pretty good.

My wife worked as an assistant at San Antonio Regional hospital and did work with Gamma knife patients. Its an alternative using radiation to target tissue in the brain vs cutting open. But not sure if its an option for your family member or if treats their condition.

 

[HNL2LHC]

One key concern the neurosurgeon has is that a biopsy in the area of the brain has a great risk of paralysis or loss of speech. He would not even do it for his wife or mother. Not sure if that would change depending on a different facility.

 

[nowski]

Loma Linda hands down...

 

[HNL2LHC]

Barrow Neurological Institute is one of the best neuro facilities. It's where Mohammed Ali had all of his parkinsons treatment and research done late in his life. I believe his estate donated a substantial sum to them as well.

Wow, that is a great site and so helpful. It is a great start in our quest. Thanks so much Kevin!!!

 

[HNL2LHC]

Loma Linda hands down...

Perfect!!! Just these two sites are so helpful to know how to search for more specific information.

Many thanks!!!

 

[DrunkenSailor]

I worked for a Neurology group in college as a part time job but that was a long time ago. The doctor I worked for was awesome but he passed in 2014. I would have recommended him in a heartbeat. Sorry I'm not more help. There are multiple facilities across the US that should be able to deliver top notch care. I have to agree that Barrow is a phenomenal facility and is constantly ranked as either number one or two in the country depending on the year. The Mayo Clinic in MN is who they are normally swapping spots with.

The only advice that I can give is be persistent. No one will fight for your family like you will. People who work in the field for the most part are caring, professional and hard working but at the end of the day they are people. Ride them to get the best results.

I am very sorry that this is affecting your family. Stay strong. Your family will be in my families prayers.

 

[HNL2LHC]

I worked for a Neurology group in college as a part time job but that was a long time ago. The doctor I worked for was awesome but he passed in 2014. I would have recommended him in a heartbeat. Sorry I'm not more help. There are multiple facilities across the US that should be able to deliver top notch care. I have to agree that Barrow is a phenomenal facility and is constantly ranked as either number one or two in the country depending on the year. The Mayo Clinic in MN is who they are normally swapping spots with.

The only advice that I can give is be persistent. No one will fight for your family like you will. People who work in the field for the most part are caring, professional and hard working but at the end of the day they are people. Ride them to get the best results.

I am very sorry that this is affecting your family. Stay strong. Your family will be in my families prayers.

Thanks!!! My mother just went through the end of life with my Step Father. She is good at keeping on task. She will most likely make this her new mission. We had lunch yesterday and she said the very same thing.

I also have an amazing conversation with the nurse while picking the CD of scan images. It was like she know there was an issue and was running around trying to help me then said fallow me I will take you to where you should be in the hospital.

Thanks for the prayers we all need them at this time.

 

[monkeyswrench]

There were two neurosurgy hospitals willing to do my last spinal surgeries: Loma Linda, and Cedar Sinai. I went with Cedar, based on logistics, as I was not able to drive. My surgeon was Dr Raymond Chu. As I later found out, my stuff was rather piddly for him. He specialized in more the field you are looking for. This guy was great. He explained things in terms I could understand. The good and the bad, risks and whatnot. He'd make his rounds, dressed in suits nicer than I'd seen before, at 5:30am. He'd see who was awake, and take the time to do more than a chart reading...he'd talk to you. He said the mornings were good because the phone or office didn't bother him then. It was a good experience for a bad situation.
As far as cancer type stuff, my mom had Dr Raul Mena, at St Joseph's in Burbank. He worked with a surgeon who's name escapes me. Very good people to deal with for oncology. Mena hand picked everyone in his "clinic". It was one or two floors at the medical center there. I mean everyone...there were no grumpy or rude people, from the phones to the guy emptying the waste baskets, very compassionate group. A group with a sometimes difficult job.

Whatever the case, good luck.

 

[HNL2LHC]

There were two neurosurgy hospitals willing to do my last spinal surgeries: Loma Linda, and Cedar Sinai. I went with Cedar, based on logistics, as I was not able to drive. My surgeon was Dr Raymond Chu. As I later found out, my stuff was rather piddly for him. He specialized in more the field you are looking for. This guy was great. He explained things in terms I could understand. The good and the bad, risks and whatnot. He'd make his rounds, dressed in suits nicer than I'd seen before, at 5:30am. He'd see who was awake, and take the time to do more than a chart reading...he'd talk to you. He said the mornings were good because the phone or office didn't bother him then. It was a good experience for a bad situation.
As far as cancer type stuff, my mom had Dr Raul Mena, at St Joseph's in Burbank. He worked with a surgeon who's name escapes me. Very good people to deal with for oncology. Mena hand picked everyone in his "clinic". It was one or two floors at the medical center there. I mean everyone...there were no grumpy or rude people, from the phones to the guy emptying the waste baskets, very compassionate group. A group with a sometimes difficult job.

Whatever the case, good luck.

Thanks!!!

 

[HNL2LHC]

The past two weeks have been challenging to say the least. There have been many ups and downs during the time since the thread was created. It is like we have had a crash course inter Neuro Science field. This weekend is an EEG test. Oh what fun that process is. Not a big issue if you are willing to go out in public looking like it’s Halloween. LOL

After this week it looks like we will be heading to UCSF. Turns out while digging up information a friend of a friend had a much more concerning diagnosis with complete success at UCSF. He had Blastoma which is Stage 4 cancer. The things they are doing at that hospital is amazing to say the least.

They will map your brain with GPS during pre op. They use images to confirm the areas of the brain activity. Then they map the tools to GPS as well for the surgery. Then the Nuero Surgon is emersed in 60” monitors of the brain scans. In essence he is in the brain while operating. He will wake the patient during the proceedure and use the images from the pre op to confirm the area of the brain that he is working on will not affect speach or motor skills.

Thanks again for everyone’s input on the topic. Wish us luck!!!!

 

[monkeyswrench]

Science and medicine are both amazing and scary. What they can do with the science is mind bending. Be grateful there are those that got straight A's, and are much brighter than average folks like me.

Good luck to you and your group. The ride will have ups and downs, but you're starting it with some good research up front.

 

[HNL2LHC]

Wow, I can’t believe it’s almost been 2 months since the last post. We have had a bunch of ups and downs. The lastest downer is the butt hurt Neurologist who was nice but too indecisive. So we got a second opinion and he was spot on with all options and clear directions. The butt hurt Neurologist tried to cancel the MRI scheduled for tomorrow. OF course I get the phone call from a crying family member what are we going to do now. The new Neurologist took the bull by the horns and got the appointment set and we are good to go. As least now we can see if the tumor has grown over the last 3 months.

I can’t believe what the Neurologist tried to do. We are so waiting for the MRI to find if the tumor has grown. Putting it off for just two weeks creates unneeded stress.

We ended up going to UCSF in April and met with the Nero Surgeon. He says that he’s got this and not concerned. There is only a 1-2% chance of anything going wrong. We were looking at having the surgery done early 2020. Turns out that it has been decided to move the surgery up sooner. Just got the call this morning the date will be in July. We have a bunch of things to take care of before the travels.

Should be a week in San Francisco and then after the week check up. After that we will have to hang out on the mainland for some time, maybe a couple of months.

Anyway I am not sure why I am posting all of this on RDP being it is not boating related. LOL

Maybe I just need to get it off my chest. Anyway please keep us in your prayers as we move forward.

 

[monkeyswrench]

Wow, I can’t believe it’s almost been 2 months since the last post. We have had a bunch of ups and downs. The lastest downer is the butt hurt Neurologist who was nice but too indecisive. So we got a second opinion and he was spot on with all options and clear directions. The butt hurt Neurologist tried to cancel the MRI scheduled for tomorrow. OF course I get the phone call from a crying family member what are we going to do now. The new Neurologist took the bull by the horns and got the appointment set and we are good to go. As least now we can see if the tumor has grown over the last 3 months.

I can’t believe what the Neurologist tried to do. We are so waiting for the MRI to find if the tumor has grown. Putting it off for just two weeks creates unneeded stress.

We ended up going to UCSF in April and met with the Nero Surgeon. He says that he’s got this and not concerned. There is only a 1-2% chance of anything going wrong. We were looking at having the surgery done early 2020. Turns out that it has been decided to move the surgery up sooner. Just got the call this morning the date will be in July. We have a bunch of things to take care of before the travels.

Should be a week in San Francisco and then after the week check up. After that we will have to hang out on the mainland for some time, maybe a couple of months.

Anyway I am not sure why I am posting all of this on RDP being it is not boating related. LOL

Maybe I just need to get it off my chest. Anyway please keep us in your prayers as we move forward.

It may not be boating related, but you're a boater, and the issue is related to your well being as well. Breath, and vent when you can. We might all be assholes, but all the same, most have been through enough to know where you're comming from

 

[Hydroman55]

I will give my 1 cent...Manage, manage and then manage some more!
I developed and project managed chemical processes and semiconductor capital equipment for living before retiring (said for background). When my wife was diagnosed with cancer I was appalled with the total lack of management from all involved. This was true at 3 different hospitals across 3 states coupled with the best insurance money can buy.
You need to be hands on and set the bar for communication and meeting objectives on time. Once this was understood things were better.

 

[HNL2LHC]

I will give my 1 cent...Manage, manage and then manage some more!
I developed and project managed chemical processes and semiconductor capital equipment for living before retiring (said for background). When my wife was diagnosed with cancer I was appalled with the total lack of management from all involved. This was true at 3 different hospitals across 3 states coupled with the best insurance money can buy.
You need to be hands on and set the bar for communication and meeting objectives on time. Once this was understood things were better.

Thank you for the advise. I think that we have a good team of doctors at the hospitals in Hawaii and Mainland. We had a concern and switched out one in Hawaii and our belief she was not a good fit was confirmed yesterday.

My mother is great at managing people and the process. She had to do it with her parents and my stepfather recently. She is a pit bull that puts our family first and gets thing done. She doesn’t have anything else to do so she fills her life getting results. Hada. Comment from the doctor yesterday that they were impressed by her questioning and capability. They do not have that happen that often.

Thanks again for the input!!!

 

[HNL2LHC]

Ouch!!!!!

 

[wsuwrhr]

Hopefully you never have to write a check for services like that.

I can tell you, those are hard to write out.

Ouch!!!!

View attachment 762731

 

[monkeyswrench]

It's a ton of money, but at least there is insurance. If there wasn't, at least be happy the technology exists. There is always a way to pay for it...I wouldn't be opposed to a bank job or two if it helps family members

 

[HNL2LHC]

So far it has not been that painful. We shall see once we get into the surgery what that will cost.