Need P & PT, Neurology Question and 2nd Opinions

[LD92599]

My mom was rushed to the ER yesterday after an MRI picked up large tumor on her brain. The neuro says it's measuring 5" - 6" and it's on the left side of the brain.

She's going to be transferred on Monday to a University hospital close by for surgery next week.

The tumor is a meningioma (?) and there's 97% chance it's benign.

I'm sure mama's here might be experienced in dealing with neuro's, etc and i'm wondering what I should ask the neuro about the surgery, prognosis, etc? I'm hoping to call him tomorrow or Monday or happen to be in the hospital room when he does rounds.

Also what about 2nd opinions? She's in ICU now and being transferred. If we want a 2nd opinion how do we go about doing that since it's inpatient already?

Thanks ladies!!!!

Laura

[cheri]

First, I'm so sorry to hear that your mom (and you) are having to go through this. P & PT heading your way...

With regard to your questions, is the doctor who is seeing her the neurologist or the neurosurgeon? If it's the neurologist, he's not going to be able to tell you too much about the specifics of the surgery. I would wait and ask surgery specifics to the neurosurgeon, as he or she will have a better idea of what to expect (remember, there's some degree of fluidity based on what they see when they get in there in the OR).

A lot of questions regarding prognosis, any additional treatment, etc., are going to depend on what the tumor ends up being. They'll have some idea immediately after surgery, but final information will likely have to wait until the path report is back.

If your mom is having symptoms, you might want to ask about the prognosis for the recovery of this, and about possible rehab down the road. Really, however, they aren't going to be able to give you too much information until they know more about the tumor.

And as far as talking with the doctor, if I were you, I'd try to be in the room when the doc rounds tomorrow--you're more likely to get the answers to any pressing questions that you have.

With regard to a second opinion, what do you have a question about? There's no way you want to have a tumor that large in your mom's head--it has to come out. If they're already planning to send her to a university medical center, you can bet that there's already been quite a bit of discussion and consulting involved, so you've basically already gotten second (and third, fourth, fifth, etc.) opinions.

Best wishes to your mom. Take good care of yourself, too. It's easy to neglect yourself when a family member is ill.

[elektra]

P &PT coming to you and your mom. That's a scary diagnosis but it sounds like the surgery could basically take care of it if it's benign. I'll be praying for the best possible outcome.

[gatorsmom]

I'm praying for your mother and your family. hugs.

[randomkid]

I'm so sorry you and your Mom are going through this. I will try to give you some information that I hope is helpful.

Meningiomas are primary tumors of the brain (meaning they originate there, they are not metastatic) that are typically slow growing. Some can grow faster, but if your Mom's tumor is that large and causing symptoms, then she needs the surgery. Was your question about a second opinion whether she really needs surgery? If she was rushed to the ER, then I'm guessing she's having problems and the answer would be that it needs to come out.

Questions for the surgeon:

-Where exactly on the left side is it located and what does that area of the brain control?
-Does he expect that your Mom will have deficits after the surgery that she doesn't have now? If so, what does he expect?
-Can he tell if the tumor is invasive or not? He may not know this until the surgery. If not invasive, they can sometimes just lift it right out and get all of it with less damage. If invasive, there can be more deficit and increased chance of recurrence as it is more difficult to remove all of it.
-How soon will he order therapy for her? The left side of the brain usually controls speech and language, so be sure Speech Therapy is ordered as well as Physical and Occupational Therapy. I work in our Neuro ICU and Neurosurgical Units as a PT and we see patients first day post-op if there are no medical reasons to defer. Don't be surprised if they come in to see your Mom the day after surgery.
-Does he think she will need rehab after discharge from the hospital? You may need to think about an inpatient stay for rehab. Often, we don't know the answer to this until a couple of days after surgery.
-Based on location, does the surgeon think he will be able to remove all of the tumor. If he doesn't know, be sure to ask about this after surgery - did you get all of it?
-How long does he expect she will need to be in the hospital?

Prognosis will not really be determined until they get the final pathology report. If benign, then surgery is all they usually need to do. Risk of recurrence depends on whether or not they are able to resect the entire tumor. The surgeon will be able to give you more information about this after the surgery, but may be able to tell you something beforehand based on tumor location.

The best advice I can give you is to write down your questions. Those docs are in and out really fast and when you are in this situation, it can be overwhelming to try to remember what you need to ask. At your first meeting, the surgeon should spend time with you to explain everything thoroughly, but follow up visits are likely to be quick. If you have any questions before and after surgery, be sure to write them down. If the doc tries to walk out and you haven't asked all your questions, ask him to please wait because you have more questions. I've also found that the more direct you can be with your questions, the better. Make them brief and to the point. You will likely get a better response. If you don't understand an answer, ask for further explanation.

Just an aside, IME, neurosurgeons don't always have the best bedside manner. Don't let that influence your opinion of the doc as a surgeon. I'd rather have someone skilled with poor social skills vs someone with a glowing personality that isn't as good a surgeon, KWIM? You may want to do some research to find out who the reputable neurosurgeons are at that hospital. You may not need a second opinion, but if you want a specific surgeon, it is your right to have that surgeon consulted.

Also, the nurses should know what time of day the surgeon generally does rounds. This can help you plan on when to be in the room.

P&PT coming your way as you go through this. Just remember that a lot of progress can occur in just a few days. The way your Mom will be a day or two after surgery is not the end result. Surgery causes trauma and stress on the body - she will need time to heal and things will improve.

[MamaMolly]

Huge hugs! :grouphug: Big P and PT for you and Mom on the way!

[LD92599]

Wow these suggestions are fantastic!

I'm writing up a list of questions which I'll somehow get answered by the neurosurgeon!

As of right now they expect her to be in the hospital for a week follow by rebab (inpatient).

I'll update tomorrow or when i have another chance to sit and type!!!

Laura

[ShanaMama]

Hugs.
I have a cousin (young guy) that had something very similar a couple of years ago. He was having disturbing symptoms which led to the discovery of the tumor. Turned out to be benign and since he had it removed he's been completely fine. I hope your mom has an equally good outcome with a smooth recovery.

[Mamma2004]

Huge hugs to you, Laura! I'll pray for you your mom and your family, hoping for a quick resolution to really frightening diagnosis. Please keep us posted!

[heatherlynn]

Lots of P&PTs coming your way! Hugs to you all.

[ThreeofUs]

P&PT coming to your mom. I won't add to the advice you've already received, but emphasize two things:
-be there during rounds if you can, listen and write everything you hear down to ask questions about later; and
-treat the surgeon like a computer, ask for facts and expect no emotion back.

Rehab is where you will be most useful, honestly. Your mom will have to work hard to get functioning back, and your support and presence will mean the world to her.

Here's hoping the tumor is benign, the surgery goes well, and your mom's rehab goes quickly. Hugs!

[bnme]

P&PTs for you, your mom, and family. :grouphug:

[MamaKath]

((((Laura)))) Prayers for you and your mom and your entire family!!!!:grouphug:

My grandmother was treated at HUH for a stroke, and we were very pleased with the care she recieved, so if your mom is going there, it is a good hospital. Morristown is another excellent one if you need to look further. The doctors I can think of off the top of my head are in Morristown and are neurologists. I agree with the posts that said ask for a neurosurgeon.

[JTsMom]

Lots of p&pt coming your way. :hug:

I think the pp's have already suggested a lot of great questions. The only thing I can think to add is a simple suggestion- always keep a notepad and pen bedside. Questions will come to you throughout the process, and often nobody is there to give you an immediate answer. When doctors answer your questions, don't be afraid to take notes and/or ask for further explanation. A lot of times they can even print out pictures if that helps.

[jayali]

My mom had brain sugery at Hackensack a while back. I found that I had to be there when the doctors were rounding or I never had enough time to talk to them. Even though visiting hours start later I used to be at the hospital by 6am. This was before kids so I was able to keep crazy hours. The post about treating the neurosurgeon like a computer is excellent. He/She should be willing to answer factual questions and explain things, but I found once I started to get emotional he shut down.
We did not have a good experience with care at Hackensake once she was "stepped down" so I literally never left the hospital. You must engage the nursing staff so that they know your Mom has a family advocate. The are so short staffed and the hospital is so large that I had to follow-up/get engaged in this as simple as coordinating transportation for tests. I hope that things are better there now. Also prepare yourself for how quickly they will want to release her after her surgery and really engage the social worker in rehab options as early as 1 day post surgery. I felt like my mother was in no shape to be released from the hospital but the social worker walked in one day shortly after surgery and said she was being released that afternoon - I think it was like 3 days post-op.
I will keep you and your mom in my prayers. I know how scared you all most be, but think positively and try to keep her spirits up. It makes all the difference in the world.
Keep us posted on her progress and take good care of yourself. This is a long and exhausting road for you as well.

[dcmom2b3]

Lots of P&PT headed your way. You've gotten great suggestions, I can't add anything. Of course, your mom's own surgeon is the best source of info, but, if you have questions of a general nature, I'd be happy to pose them to my BIL who's a neurosurgeon.

Take care of yourself, too. :hug: