Author Topic: Just recently diagnosed  (Read 11188 times)

KathleenMary

  • New Member
  • *
  • Posts: 18
Just recently diagnosed
« on: August 06, 2010, 05:39:35 pm »
Hi,
  I have just recently been diagnosed with AN. I saw the neurosurgeon last week who does not recommend surgery...we are on the same page.  He is recommending CK.  We did not speak much about side efects.  I'm really concerned about swelling and steroids.  My tumor is 2.5x2.7 cm.  I am almost 65 years old (in another month or so).  I have a second opinion with a neurosurgeon from the U of Colorado in the Denver area on the 18th of this month.  The neurosurgeon I saw this week seems to have experience with CK but I don't have a feeling for how much.  Should I be more concerned that the radiology oncology guy is more experienced that the neurosurgeon.  I want the best, but I don't really know what that is when you are looking at credentials.  Any information would be appreciated as well as info on steroids, etc.  thank you
KathleenMary

free2be

  • Full Member
  • ***
  • Posts: 149
Re: Just recently diagnosed
« Reply #1 on: August 06, 2010, 05:55:10 pm »
KathleenMary,

I can't offer much information or advice, but I can tell you that there is a wealth of information on all these questions as you explore the forum. Do a search for some of your key word concerns from the main page of the forum. You'll find lots of discussions on these issues. It has been invaluable to me. It is important to feel comfortable and confident in your doctor and your decision. Additional opinions are always helpful and making sure you find someone well experienced in treating ANs is also very important. My tumor is much smaller than yours, but after much research, reading, and contemplation, I have recently made the decision to go to Stanford for CK treatment.

I'm sure others will be chiming in soon.

Best wishes,
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

KathleenMary

  • New Member
  • *
  • Posts: 18
Re: Just recently diagnosed
« Reply #2 on: August 06, 2010, 06:57:37 pm »
Thank you Connie for your information.  I have been looking over this site for a number of days.  How far are you from Standford?  I guess my other concern is that my employer is switching health nsurane from Anthem Blue Cross/Blue Shield to Kaiser, which really has a terrible reputation here in Colorado.  Thanks for your input
KathleenMary

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: Just recently diagnosed
« Reply #3 on: August 06, 2010, 09:52:38 pm »
Kathleen Mary,
Welcome to the forum, please do not hesitate to ask or express anything you are feeling.  We're here to help you through your journey.  I just want to say that I'm happy you are here as we have many "experiences" to share with you as well.  Getting second opinions are very important in you decision making process, but it seems you are well on your way.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Just recently diagnosed
« Reply #4 on: August 06, 2010, 11:56:16 pm »
Hi, KM.  Welcome to the Forum  ;D  Sorry about the AN.

To answer your question, no, you should not be concerned that the radiation oncologist knows more than the neurosurgeon about CK.

CK is the job of the radiation oncologist - neurosurgeons generally do surgery, and in my experience, often don't know much at all about radiation.

I don't know how things work in your neck of the woods, but in Illinois where I live, a team consisting of a neurotologist and a radiation oncologist typically perform radiation procedures, while a neurotologist and a neurosurgeon typically perform surgical procedures.

Dr. Chang @ Stanford has a stellar reputation when it comes to CK.  If you are not opposed to going to California for treatment, I'd definitely consult with him.

You should also contact the ANA for their informational brochures.  You'll find they are an excellent resource and will explain a lot about both radiation and surgery.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Just recently diagnosed
« Reply #5 on: August 07, 2010, 02:09:49 pm »
Hi,
  I have just recently been diagnosed with AN. I saw the neurosurgeon last week who does not recommend surgery...we are on the same page.  He is recommending CK.  We did not speak much about side efects.  I'm really concerned about swelling and steroids.  My tumor is 2.5x2.7 cm.  I am almost 65 years old (in another month or so).  I have a second opinion with a neurosurgeon from the U of Colorado in the Denver area on the 18th of this month.  The neurosurgeon I saw this week seems to have experience with CK but I don't have a feeling for how much.  Should I be more concerned that the radiology oncology guy is more experienced that the neurosurgeon.  I want the best, but I don't really know what that is when you are looking at credentials.  Any information would be appreciated as well as info on steroids, etc.  thank you.

Welcome, although I'm sorry your AN diagnosis brought you here. 

As Jan stated, a radiation oncologist should be better informed about radiation procedures than a neurosurgeon and, conversely, you would expect a neurosurgeon to be better informed about AN surgery than he is about radiation.  I would go back and ask the first neurosurgeon you saw why he recommend radiation.  I expect it may be due to your age.   

Whether you chose radiation or surgery, you want to ask the doctor how much experience he has with acoustic neuroma patients.  Many neurosurgeons do a lot of operations on the spine but have minimal experience with skull-based tumors.  Radiation oncologists often treat various forms of cancer but have little experience with acoustic neuromas.  I was very fortunate to have a neurosurgeon that had decades of experience removing ANs and a radiation oncologist that also had experience with using radiation on acoustic neuromas - and they worked as a team, because my neurosurgeon had a good grasp of radiation procedures. The result was a complication-free AN surgery that debulked my large AN  from 4.5+ cm down to 2.5 cm, then used FSR (Fractionated Stereotactic Radiotherapy) to destroy it's DNA and, effectively, kill it (stop it's growth - forever).  Today, four years later, I'm doing great and highly recommend the debulking/radiation protocol for AN patients with large tumors, when their doctor approves.  Whether that applies to you is unknown, only a doctor can tell you that.  However, should you chose radiation, it has an excellent chance to be completely effective.  Many of our member's have undergone one of the 3 forms of radiation treatment for their ANs; FSR (Fractionated Stereotactic Radiotherapy), GK,(GammaKnife) or CK (CyberKnife).   I underwent my successful FSR treatments (all 26) when I was 63 years old.  I suffered no ill effects - but my AN did! (it 'died' - R.I.P.:)  I trust that you'll have a similar experience.  Please try to stay connected here because we want to help and support you. Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

KathleenMary

  • New Member
  • *
  • Posts: 18
Re: Just recently diagnosed
« Reply #6 on: August 07, 2010, 05:30:37 pm »
Thank you all so much for your kindness and encouraging words.  I really appreciate the information shared by all of you.  Jim, my neurosurgeon did not suggest surgery and I do suspect it is my age and I was on the same page as he.  What his recommendation is the CK and I will ask when I meet with the radiologist (August 26) what experience he has with AN.  One can get those reports about Drs. on the internet and did look at his and it does not state that his expertise is in AN nor does it mention anything that would make me think he has done CK with AN...so definitely will check that out.  However, the neurosurgeon does have experience with AN, however limited.  It is just tough to know what the right choice is but am hopeful I will feel it when I know it is the right person.  I will check back and keep in touch.  I see the second neurosurgeon next Wednesday at the University so we will see what he has to say.  Thank you all again.
Kathleen Mary

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: Just recently diagnosed
« Reply #7 on: August 07, 2010, 06:52:22 pm »
Hi Kathleen Mary,
A late welcome, looks like you have gotten some great advice, and are on top of things, so that is good!
No rush, the tumor is benign, very slow growing (the majority of them anyway), and you can get as many opinions as needed, depending on insurance.
So we are a good sounding board, let us know what you continue to find out.
Hopefully you can go the radiation route and avoid surgery altogether.
Best wishes during this journey of yours,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

free2be

  • Full Member
  • ***
  • Posts: 149
Re: Just recently diagnosed
« Reply #8 on: August 08, 2010, 07:59:02 pm »
Thank you Connie for your information.  I have been looking over this site for a number of days.  How far are you from Standford?  I guess my other concern is that my employer is switching health nsurane from Anthem Blue Cross/Blue Shield to Kaiser, which really has a terrible reputation here in Colorado.  Thanks for your input
KathleenMary

KathleenMary,

To answer your question, I am across the country from Stanford. I live in GA. But after my research and assessing my situation and options, that is where I feel most comfortable going for CK. I also considered other places that have been mentioned many times on the forum. The options I was offered in Atlanta and my gut impressions, just did not make me feel comfortable. It's a long way to go, but as someone here has said many times, this is my brain we're talking about; so, it is important to feel confident in your decision. The consult was free and done remotely; so, I haven't even been to Stanford yet, but I talked to Dr. Chang after he looked at my MRI. Others will do the same. So, you many not have to worry about insurance for a consult, but obviously you'll need to get treatment where you can use your insurance. Sometimes there are additional benefits that insurance doesn't always advertise. I found out that while my regular PPO network would not cover the process in CA, I can use an alternative network through my insurance that will cover it as in network. So, that was a great relief.  Keep exploring and it will become clear to you what you need to do. Most people on the forum will say that making your decision, the what and where and with whom, is the haredest part. 

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: Just recently diagnosed
« Reply #9 on: August 10, 2010, 11:44:33 pm »
Welcome, KM, I do apologize for weighing in so late. My joy for meeting you, my regrets for meeting you HERE. I have found great comfort and wisdom on this forum. I won't repeat what every one has said before me, just know that this is the place to come for answers from those who have experience.

I did what I believe is a lot of research: Internet, print, consultations with three Doctors (Blevins, Gibbs, and Chang - all of Stanford) and received an opinion from Dr. Loeffler at Boston's Massachusetts General. I was advised that, in my situation, I could choose my option: (surgery, radiosurgery, watchful waiting). W & W was never an option I wanted to consider - attack that sucker - so I was totally for surgery - then radiosurgery - then surgery - then radiosurgery . . .   ???  I found it all very confusing at first; each option seems to have it's own unacceptable risk. But I've come to decide to do CK with Chang and have found peace and confidence in this decision. Everyone says that getting here is the hardest part and for that, I cannot say because I've not gone the distance, but I'm willing to take their word for it.

Good luck in your journey, you're not alone.  :)

Mark
« Last Edit: August 11, 2010, 04:35:28 am by 6pick »
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

KathleenMary

  • New Member
  • *
  • Posts: 18
Re: Just recently diagnosed
« Reply #10 on: August 11, 2010, 06:44:49 pm »
Thank you Mark for your thoughts.  I do know that neurosurgeon in Colorado Springs does not recommend surgery; CK seems the choice.  I spoke with a friend of my son's who happens to be a pathologist at University Hospital in Denver.  He pointed out to me that ANs ar enot common by any means and that I do want to make sure the radiologist team has experience with ANs not just brain tumors and CK.  I meet with the radiolgosit here in thespirngs on the 26th of August.  I guess one of my concerns for myself since everyone is very high on Dr. Chang, what does one do about follow-up if there are problems, fly to California or what?  He sounds like an excellent physician.  I have done some but not alot of looking at the Rocky Mountain Cyperknife Center.  I will see what the neurosurgeon from Denver says next week.  Again, thanks for your input.  I'm hoping to find that peace!!!!
Kathleen Mary

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: Just recently diagnosed
« Reply #11 on: August 12, 2010, 07:54:49 am »
Kathleen Mary,
If you do go to CA your aftercare and follow ups can be done over the phone and in tandem with your current neuro. I know plenty of people who traveled for their treatment used this method for after care. Not sure how they found it to be, but I'm sure they worked through it.  If you find your current Dr has a problem with this method I say find another one...

Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

KathleenMary

  • New Member
  • *
  • Posts: 18
Re: Just recently diagnosed
« Reply #12 on: August 18, 2010, 09:05:08 pm »
Just an update from me and if any one wants to comment, please do so.  I went to see the neurosurgeon at the Univ. of Colorado Medical Center today for my second opinion.  He recommended Gamma Knife.  He stated he would give me conscious sedation so I would not come completely unhinged.  More importantly he has had 24 year of experience and direct experience with 400 people who have had ANs.  He also felt that the literature did not support fractioned SR as being any better than one time Gamma.  I am more inclined to go with this physician, since he is associated with  a teaching hospital, has the experience and won't have issues with my insurance.  the company I work for is switching insurance companies as of the 1st of September to Kaiser...which really has a very bad reputation.  My husband says..."people who are concerned with ObamaCare have not had to deal with Kaiser" and I watch the reaction of medical professionals when I mention I will be having Kaiser.  I will be covered under Anthem Blue Cross until the end of this month.  Anyway, I think I can get through this now since I am significantly more clear about going with this physician and the gamma procedure.
KathleenMary

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Just recently diagnosed
« Reply #13 on: August 18, 2010, 11:16:45 pm »
KathleenMary -

I've said it before, and I'll say it again.  Go with your gut.

If it feels right to you; you are comfortable with, and confident about, the doctor; and he's/she's qualified and experienced in treating ANs (sounds like he is); then follow your instincts.

Choice of AN treatment is probably THE hardest part of the AN Journey and when you get to the point where you find what is right for you, IMO, you just know it.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: Just recently diagnosed
« Reply #14 on: August 19, 2010, 09:22:26 am »
Kathleen Mary,
I agree with Jan, nobody else can make this decision for you and only you will know which avenue to take.  Congrats on making your decision!  And please keep us posted on your progress and whatever date you are scheduled so we can put it on the calendar.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt