GK, AN regrowth

[Vincent87]

It appears from Mom's most recent MRI (almost two weeks ago) that her AN has increased in size.  We were verbally told by the GK doc's nurse that it had shrunk in size in November.  Now it appears that's not so.  We've yet to be notified by Mom's GK doc or neurosurgeon of the results.  (Kinda makes sense now on the day of discharge from the hospital that the neurosurgeon resident couldn't answer my questions on her edema or status of her AN.)  In a word, we are heartbroken.  I've no clue how to proceed.  I doubt we'll find any doctor that will treat Mom-this most recent MRI notes necrosis, a phrase that everyone of Mom's doctors were always hesitant to use.  Pro-ton beam, cyberknife...the AN is now too big for that and it's not like the family is quick to have Mom's brain exposed further.  It just keeps getting worse. 

[SuzeAN]

This is heartbreaking news, I have read your posts my prayers are with you and your family. 
Is there anyway she can be seen by new team of doctors elsewhere?  Can you try to contact some experts in the field? I am sorry if these suggestions redundant, just grasping here. 

keep the hope,
Sue

[kat]

 Dear Vincent

I just went on line in library and saw your latest post . I am so sorry to hear that your moms AN has grown it must be devastating news after all she has been thorugh . Surely the specialists who were responsible for her treatment must now come back with some
answers and give you all the support that you  now desperately need. I suppose that they have ruled out any chance that this is
temporary swelling of the AN due to treatment. Give your mom a hug and my best wishes . I will keep checking these pages whenever I get to a library or an internet cafe

Best regards Kat

[Vincent87]

Sue and Kat (how's the sailing going?)

Tomorrow Mom and I are meeting with her ENT who initially recommended the GK doc.  I won't be calling the GK doc ever again.  I'm still waiting for him to return my call from 12/13/05 and then there's his ever caring and empathetic RN who grew impatient with my 10 questions and said "it's not life-threatening."  "No," I told her, "only life altering."  I've not told Mom yet; I'll get with the doctor first and tell him or rather show him the MRI report since I'm still waiting for the GK doc and her neursurgeon to call us with the results.   Funny how they ALL disappear when they screw up.  Not one of them has any backbone.  I just want Mom better than she is-that's all the famiily wants.  I guess we're asking for too much.  My sisters and I are greatly concerned (sick over it) that no doctor will see us and help.  We don't have a lawyer.  We don't think in terms of malpractice (though this seems to be pretty clear cut).  We just want Mom to be what she was prior to the GK and sadly that's not a possibility.

Thanks for the good thoughts...Mom sends them all right back to you.

[GM]

Vincent,

I am sorry to hear of your mothers complications.  How large is your mothers tumor?  As you can see in my footnote of my post I too am a Gamma Knife patient.  My tumor swelled from 1.8 - 2.1 after treatment...over a 2 year time.

Are you sure it has grown?  I ask that because I recently went through a similar situation (you may want to scan my posts here) where my tumor was read as growing by the University of Virginia (UVA), but read a stable at Portsmouth Naval Hospital (the last 2 MRI's).

UVA suggested retreatment or surgery after my 2 year anniversary MRI.  I dove in and asked a lot of questions.  I must admit that I heard quickly from UVA's  Dr. Steiner who performed my GK treatment called me directly after I emailed him questions.

UVA was actually looking for shrinkage...it's how they measure success.  I told Dr. Steiner that I didn't want to do anything unless I was ABSOLUTELY sure I needed to do something.  I am aware that the MRI's have a error rate...and it is increasesd when the MRI is done one place (Portsmouth Naval Hospital) and read at another (UVA).   

Short and skinny is...don't fret over a few mm change.  Unless it is showing a steady growth over a period of time.  Dr. Steiner told me to go ahead and hold off unless I develop new symptoms.

So for me I'm waiting for another MRI and plan to do nothing unless I'm absolutely sure I need to.  By the way I asked Dr. Steiner about retreatment rates and growth limits.   No limits on size after first treatment...and 80% success rate on retreatment.  UVA's link is in my footnote.

I hope this helped...

Gary

[Larry]

Vincent,

Our thoughts are with your mother, you  and your family. I just hope that the medicos can find something to help. It must be so hard for you.

Larry

[kat]

Hi Vincent

I just got to a e mail booth in Nassau and picked up your latest post .I hope that there will be some help cominh your way soon as far as the malpractise goes it seems that there must be some answers needed there . the best thing might be not to rush into anything now too soom from the frying pan intto the fire so to speak.  The sailing is going ok and i have almost forgotten about my AN for long periods and worried about the hazards of sailing instead .

Best regards to you and your Mom Kat

[shoegirl]

Vincent,

Hi, I have read some of your previous posts and hope that your Mom gets some positive news soon.  I too was wondering about swelling due to radiation versus regrowth?  Have all the MRI been at the same place?  I had two MRIs very close together at two different locations and got two different measurements.  I have been told that some machines give more accurate measurements (open MRI versus closed MRI) - not sure if this is true?

How much has it grown?  I hope there is some kind of error.  I'll keep your Mom in my prayers and send good wishes your way.

Suzanne

[Vincent87]

Hey Gang!

I faxed Mom's MRI and CT scan reports to two big city doctors including a time-line and personalized notes.   It has been three weeks.  I've not heard from them.  I call each once a week, very polite; their secretaries promise me a return call.  (We're only an hour's drive from their respective hospitals.)  I just think that ALL these doctors have pushed themselves away from the table.  I was told that neurosurgeons dole out about $275,000/year in malpractice insurance.  My mom is very complicated-so why should they risk it?  I'm willing to pay for the out of pocket office visit-about $400-and have said just that.  Mom can't tolerate an ambulance ride-plus, all I'm asking right now is for someone to read her films.  Her local doctors (GK and neurosurgeon) still remain silent.  Her vertigo is off the chart; today she said she feels like she's on a boat, a small one, in the Atlantic, during a winter storm.  (FYI:  Mom's neurological history is at only one hospital.  I know it's really important for consistency.)  My sisters and I don't know what to do anymore. 

[Larry]

Vincent,

A shocking situation and you have all of our support here. If nothing else, keep venting your anger, we will listen.

All I can suggest is to further explore other doctors / hospitals until you strike someone that will progress with something. I know its far easier for me to say it than you to physically do it but you gotto keep trying, for your Mom's sake. It is really important that she gets some quality of life back and also for you too.

perhaps, you share the workload with your sisters and put a standard set of documents together, which you pretty well have already including copies of the latest MRI's and radiologist reports and a standard letter outlining the history and current situation and where you'd klike your Mom to be - eg, little or no vertigo etc.

have these ready on your computer - it would be great to scan these reports and images into your computer so you have an "e" file of it all. Have your standard letter ready to just change the name and address.

Between yourself and your sisters, get a list of hospitals and names and ring them all up. Hopefully you'll find one that will take a further interest.

I know its hard yakka but don't give up.


Laz 

[shoegirl]

Vincent,

I continued to be amazed at your Mother's situation.  I just don't understand how her doctors can be so irresponsible?  I really like Larry's suggestion.  Maybe it will help reduce your stress alittle. I was also wondering if you have sent her file and films to any other centers.  It sounds as though your Mom can't travel far, and I am not sure where you are?  But perhaps an opinion from another center would be helpful.  I know alot of centers will look at your case and give you a recommendation over the phone.  Not ideal, but atleast something?

[ppearl214]

Vincent,

I know not what to say... medical malpractice lawyer may help in the long run, but for immediate assistance, are you and your sister able to communicate with dr's outside of your area to consult?  I know your mum cannot travel distances now (maybe a train? Amtrak is a possibility???)

I wish I had something helpful to say... I'm at a loss... only hoping that you and your Mom and family/friends know that we are here for you anyway we can. 

Phyl