Seeing Neurosurgeon Today

If you all would kindly send a prayer, my friend will appreciate it. She found a NS in Orlando that will (hopefully) help her. All she knows so far is that she has a Glioma near her brain stem and mid brain. Her Onc said it appeared to be low grade. Now, today's appointment, he might be willing to get a tiny piece of the tumor so they can test the cells and provide a more thorough staging and aggression, as well as how much radiation she can take. There is a chance he won't do it because of the risks involved due to the placement of the tumor. Docs are apprehensive due to this tight space and don't want to hit the brain and cause a bleed or worse. She's determined to find a doctor that is willing to try so if this doc decides he won't, she will continue looking for one that will. She's been told that this NS she's seeing today is the best in Orlando.

I'm just so amazed at her strength so far. She went and donated her long blonde hair to locks of love over the weekend.

My question, is it normally this hard to find someone willing to do this type of biopsy? It seems like it's necessary so why not do it? I just want her to get some answers!

I don't understand this. I'm so confused. She says that they will NOT be doing a biopsy at all. Too dangerous. Why? Why not at least try? So they're just going to do the radiation and check again in 3 months? That's not enough. Why can't they do more? I'm so lost.

Im sorry but your friend needs to get a second opinion, and fast. This doctor sounds heartless. Trust us, their are many many NO's out there that will spend more time with her and explain things much better. This is such a shame for her and her loved ones to get such cut and dry answers so quickly.

Hope to God, she finds the " right" doctor for her.

Linda

Hi - I was initially told that they could not operate to get a biopsy as well.  my AA III tumors were located just above my brain stem.  I finally found a Dr at Valley Hospital in Ridgewood NJ - Dr. Anthony D'Ambrosio, who was willing to do the biopsy.  He said he went in through the 4th ventricle and got just enough to do a biopsy.  He's a great Dr.  He also put in a shunt for me to relieve my Hydrocephalus.  Let me know if you need his contact information.

Thank you both for replying. I thought those were kind of harsh things to say to a patient. She's getting a CT today to set parameters for radiation and also being fitted for the "cage" for her head to help aid in the precision. I'm going to have to google that one as I have no idea what kind of cage she is talking about. This all seems to be moving at warp speed since they said it was a Glioma. At first, while waiting to hear what it was, that felt like forever and now things are moving so fast.

As for a second opinion, what can I do to help her do this? We live in Central FL and she has limited means (financially). The NS she met with the other day was supposedly the best and she had such high hopes for getting the biopsy. Something he must've said has her convinced it's "gospel". She is relying on friends to drive her around to appointments due to some of her symptoms. Thank you again.

There are excellent neurosurgeons at Johns Hopkins in Baltimore MD.  I think you can just have reports faxed and then maybe drive up there for an appointment depending on what they say.  They may have reduced or free places to stay (not sure) if you don't have funds.  I would at least check into it. 

On Dec 19, 2012 3:57 PM redskinsfan69 wrote:

Thank you both for replying. I thought those were kind of harsh things to say to a patient. She's getting a CT today to set parameters for radiation and also being fitted for the "cage" for her head to help aid in the precision. I'm going to have to google that one as I have no idea what kind of cage she is talking about. This all seems to be moving at warp speed since they said it was a Glioma. At first, while waiting to hear what it was, that felt like forever and now things are moving so fast.

As for a second opinion, what can I do to help her do this? We live in Central FL and she has limited means (financially). The NS she met with the other day was supposedly the best and she had such high hopes for getting the biopsy. Something he must've said has her convinced it's "gospel". She is relying on friends to drive her around to appointments due to some of her symptoms. Thank you again.

Hi Red,

It sounds like the "cage" is actually a firm mesh "mask"; I wore one for proton.  They let me keep it afterward; I've stashed it out in the garage.  If your friend isn't claustrophobic it shouldn't be a problem.

Good luck to your friend.  We didn't live far from the treatment center (Loma Linda) so getting rides was not a problem.

On Dec 19, 2012 3:57 PM redskinsfan69 wrote:

Thank you both for replying. I thought those were kind of harsh things to say to a patient. She's getting a CT today to set parameters for radiation and also being fitted for the "cage" for her head to help aid in the precision. I'm going to have to google that one as I have no idea what kind of cage she is talking about. This all seems to be moving at warp speed since they said it was a Glioma. At first, while waiting to hear what it was, that felt like forever and now things are moving so fast.

As for a second opinion, what can I do to help her do this? We live in Central FL and she has limited means (financially). The NS she met with the other day was supposedly the best and she had such high hopes for getting the biopsy. Something he must've said has her convinced it's "gospel". She is relying on friends to drive her around to appointments due to some of her symptoms. Thank you again.

Hello - my boyfriend has HNC and we live in Central FL.  He has no insurance but is being treated at county hospital under their catastrophic care program.  What part of Central FL are you in?  Maybe that coverage is available for her.  Send me a private message and we can chat if you'd like.

  

The neuro-oncology branch at the NIH does second opinions for free, and may be able to set up a NS consult as well.

Yes, the NIH should see her free, though they won't cover travel expenses. If she wants to go to Baltimore or somewhere else (how about Duke? It's closer) then you should contact the American Cancer Society. They will cover one plane fare a year for treatment, and they also run Hope Lodges in many cities. We stayed at a Hope Lodge for six weeks while my sister had radiation treatment, and it was free. Not only that, but I've found that if you email just about any of the top neuro-surgeons and neuro-oncologists with your questions, you'll get a prompt answer. The trick is not to contact their secretaries or other gatekeepers, but the doctor him/herself.