Should I wait or 2nd opinion?

[barbjo]

Hi all, I am in need of help.  My neurosurgeon ordered an MRI  as a follow up to my '03 surgery.  The radiologist found residual tumor growth.  The neurosurgeon has issue with the hospital I had the MRI done (thats another long story) so he refuses to accept the MRI results and wants to wait 6 more months and retest.  He told me as well that he wants to use the Gamma Knife if it is residual, anyone have opinion on Gamma Knife?
Oh, and my neurosurgeon gets quite mad at me when I tell him I have headaches, but from the posts I read it is common.  Really questioning my choice in surgeons.
Thanks!!
Barb

[tsl]

Hi all, I am in need of help.  My neurosurgeon ordered an MRI  as a follow up to my '03 surgery.  The radiologist found residual tumor growth.  The neurosurgeon has issue with the hospital I had the MRI done (thats another long story) so he refuses to accept the MRI results and wants to wait 6 more months and retest.  He told me as well that he wants to use the Gamma Knife if it is residual, anyone have opinion on Gamma Knife?
Oh, and my neurosurgeon gets quite mad at me when I tell him I have headaches, but from the posts I read it is common.  Really questioning my choice in surgeons.
Thanks!!
Barb

Hi Barb,
I've been struggling with making decisions for myself as to what course of radiosurgical/therapy treatment I should do and at what point in time.  (I tend to waffle.) After reading your post re your neurosurgeon, my first reaction was that you DEFINITELY want to get a 2nd opinion and probably a new neurosurgeon.  No waffling!

From the other folks on this site, I've heard very positive things re Gammaknife as a treatment choice, but I'd be reluctant to have your present neurosurgeon do it.

Something I learned from a local AN support group:  When having a MRI, you can request a copy of the radiologist's report.

Take care.

[barbjo]

Something I learned from a local AN support group:  When having a MRI, you can request a copy of the radiologist's report.

You are so right!  I didn't believe everything I was reading from the neurosurgeon, unfortunately no phone call on this matter just a letter.  The letter was to enclose the radiologist report but didn't.  So, I called the hospital where I had the MRI and requested a copy of films and report.  I wanted to see for myself.  And sure enough it shows (granted my limited knowledge) the tumor measured and clearly stated by radiologist.  My concern is waiting 6 months so that I will be facing having conventional surgery again. 

How much growth can occur over 6 months and on a residual does it re-grow faster?

Anyone know of any neurosurgeons at Duke University? 
Thanks!

[FlyersFan68]

I sincerely hope that it's not regrowing. IMO, I think that the advice to wait 6 months is reasonable. There are rare instances where the regrowth happens quickly but I think much could be learned within the first six months or even longer. The blood supply is removed with surgery so even though possible regrowth is generally uncommon. Maybe it's a tiny piece of scar tissue or something?? Are there measurements? Even if there was a tiny piece of tumor left behind does not mean it will regrow. Anyway, If I was faced with the possibility of regrowth I would need to see some descent growth before deciding a second treatment. As for second treatments there are some that state the second surgery being much easier than the first. I guess I would pursue the best in surgery and radiation then decide. If growth is evident and confirmed by more than one then I would choose some form of treatment that suits me. The best institutions will review your films for free. Have your films put on disc with their reports and mail them out! Hoping for the best!   

[HeadCase2]

Barbjo,
  My AN was removed at Duke University Hospital.  If I remember correctly, the AN (Skull Base) team there (there are at least two teams) will review an MRI free for you.  Let me find the URL and I'll send it to you separately, along with the doctor's names.
Regards,
 Rob

[NF-2er]

Hi;

   I think in general one will find the radiologist's report reading more accurate.
   I also believe neurosurgeons are prejudice toward the radiological department in their facility.
   I've had Mayo Clinic reject my local, and smaller hospital's MRI as being inadequate. In follow up with the local hospital, they indeed did miss some things but found an additional thing, "they thought", but it turned out as not so.  : )

   NF-2er

[Betsy]

Hi Barb,

For what it's worth, I think any neurosurgeon who gets mad over a patient having headaches isn't a very good doctor.

I also wanted to share something I read recently about tumor growth.  It's from a International Radiosurgery Association report published in May of 2006.  It's talking about growth of intact untreated ANs, not residual growth, but you might find it interesting.

"Overall, three separate growth patters can be distinguished for vestibular schwannomas: (1) no or very slow growth, (2) slow growth (i.e. .02 cm/year linear growth on imaging studies), and (3) fast growth (i.e.>1.0 cm per year).  While most vestibular schwannomas grow slowly, some grow quite quickly and can double in volume within six months to a year.  While most tumors adhere to one or another of these growth patterns, a small number of tumors appear to alternate between periods of no or slow growth and rapid growth."

Theres a lot more in the report, that's just part of one paragraph about tumor growth.  I suspect it's a very difficult thing to measure since ANs are so sneaky.  Here's the URL for those who want to read the entire report:  http://www.irsa.org/AN%20Guideline.pdf

Why not get a second opinion while you're waiting?!?

Betsy

[TP]

When I first started having problems with my neck and shoulder I was treated by a chiropractor. Eventually I saw a pain Dr and he scheduled a neck MRI (January 2006) at the smaller beaches hospital. The neck MRI showed I had some issues with my neck and my pain Dr treated accordingly. Several months later (May 2006) as I was losing hearing and started to get head aches, my pain DR ordered a brain MRI from the smaller beaches hospital. That MRI showed my AN which was about the size of a golf ball. When I picked up both MRI's from the hospital the MRI for my neck was not included in the envelope so a trip back to the hospital to pick them up. As it turned out the neck MRI clearly showed my AN on the brainstem, it appeared the radiologist missed it back in January 2006. So bottom line, I won't be having any more MRI's at the smaller beaches hospital. I now have all my MRIs at the larger downtown hospital in the office next door to my neurosurgeon.
   

[barbjo]

Thank you all!
Everyones input has been useful and very comforting.  My husband and I have really felt lost in all this, and seaching for a directing (or sense) where we currently find ourselves.  There is a measurement on the MRI, you can clearly see the area where it is measured.  I am very impressed with what I read about Duke University and will be having my doctor (GP) give me a referral. 
I wish you all the best!!!!!!!!!!!!!!!!!
Barb

[yardtick]

Hi Barb,
I too I'm going for a 2nd opinion.  Bruce and Windsong have both encouraged me to do so.  When I called my GP's office yesterday his receptionist was all for it.  Since I live in the Toronto area and so does Widsong she recommended someone.  Today I had a follow up with the original Neurosurgeon.  I waited 70 mins before he saw me.   I asked him about the Gamma Knife.  At first he told me my facial neuroma was too big to have the proceedure.  I asked how big is the tumour and he said 9mm x 5mm.   I also asked were on the facial nerve is the tumour and he rambled it off.  Than get this he said oh the Gamma Knife might work, I've got you mixed up with someone else!!!  My internet is down and I couldn't pull up your complete file.  I almost fell off the chair.  Than I asked him how many nerve grafts has he done and he said a few.  A few is that 3, 20 or 100.
OKAY, I really have confidence in this joker now.  The neurosurgeon Widsong recommended I emailed Sunday evening and he emailed me back yesteday telling me he would take me on in his clinic and to have my GP fax or email the referral.  Amazing, but true.
Do what your heart tells you.  You know deep down inside when something isn't right.  You also know deep down when a Dr is giving you the run around or not being forthright with all of the facts surrounding your health. 
This forum is like a life line for me.  I can't wait to come home from work so I can read all of the new posts.  I have to beg my sons to let me on the desk top or lap top.
All of you newbies like me and all of you junior members, senoir members and heros, I am so grateful you are out there.   I also wish everyone the best with there journey.
Anne Marie

[pearchica]

Barbjo: for what it's worth, I got 4 opinions prior to my final treatment.  It was this website and all the support I got from the gang to give me the courage to keep going for more information.  I hope all is somewhat well with you given the circumstances.  Take care of yourself.  Annie