post treatment Gamma Knife

[betty]

Dear ANA members,

I have been post Gamma Knife for almost two years. My AN has increased from 2.1X1.4X1.4 cm to 2.4X1.7X1.7 cm at one year and now is at 2.6X1.8X2.0 cm. The growth seems to be slowing down, but has not stopped. I have a darkened area of necrosis in the tumor center. I also am feeling fine except for hearing in my AN ear has always been poor. No new onset of side effects. Has anyone had this experience? My thought is to wait and watch. I know many tumors take longer than two years to shrink.

Thanks, Betty

[ppearl214]

Betty,

I am 3 mos post CK, not GK... but I know of others here that have had GK, some recent (Like Sue... we had our treatments at approx the same time) and others.. have you checked the Radiosurgery forum for GK updates?  I know tumors have to swell before the implode but that does seem like quite a while.  Glad to hear signs of necrosis but curious about the GK and how they aimed the beam at it's edge. Can you get any notes from your radio team on this? What are the thoughts of the neuro- and radio-oncologists?

Hang in there!
Phyl

[Derek]

Hi' betty'...

I am into my fifth year of 'wait and watch' and had an initial consultation re GK treatment in the UK thiis week.

 My recent MRI scan in April indicated 'no change' albeit my ENT consultant said that there HAD been signs that the AN had enlarged since my previous MRI scan in 2004!

The GK neurosurgeon confirmed that there had in fact been slow enlargement over the past THREE YEARS whereas my annual MRI scans since diagnosis in 2002  (confirmed by my ENT consultant) had always indicated 'no change'.

 It is now apparent that you cannot totally rely upon the neuroradiologist reports and I am afraid that I have lost confidence in my ENT consultant for not having detected the slow enlargement over the past 3 years hence my second opinion sought from the GK neurosurgeon.

The size of my AN is presently 2 x 1.2 x 1.6cm and is now contacting with the brain stem. I am inclined  to agree with the advice of the GK neurosurgeon (who has instiiled me with confidence) that there is no merit in continuing with 'wait and watch'.

 I am fortunate that I have a choice in treatment options and I do not wish to go down the microsurgery route. I am contemplating GK treatment in the near future albeit my only symptoms are single-sided deafness and very minor tinnitus. I am also aware that there are also risks attached to GK treatment which is why I have preferred to opt for 'wait and watch'.

 I just wondered if, in retrospect, you would still have opted for GK?

Best Regards

Derek

[bfriedman]

I thought the GK experience was very good. The pin sites were no big deal. My doctor at UCSF is excellent as well as the whole team that I worked with. UCSF is a Brain Tumor Center that recommends GK over CK because they think the radiation dose is more accurate only because it has been around longer and there is more data to back it.

I keep copies of my MRI scans as I bring them between Kaiser and UCSF. Thanks to MRIs we can see a lot of what  is going on in our own heads without a doctor. I have heard that the accuracy of the MRI is within 1 mm. Derek, take a look yourself and see if your AN looks much bigger. If it is about the same, why not keep waiting.

[Derek]

Hi there 'B'...


Many thanks for that response. When I went for my second opinion with the GK neurosurgeon  I was given access to my MRI scans. At the GK consultation my four MRI images from 2002 to 2006 were compared side by side on the light-box and I took no convincing that there had been a degree of enlargement over the past 3 years which was obvious even to a layperson. That is the reason why I no longer had confidence in my proposed microsurgery team.

I would like to remain on 'wait and watch' for as long as possible and the GK neurosurgeon has stated that in his opinion I WILL require some form of treatment within the next 3 years.

 I am tempted to remain on 'wait and watch' until the 11th hour! but realistically I cannot see what the advantage would be...I presume it can only get bigger?

I just wondered how long you had been diagnosed and on 'wait and watch' before your GK treatment; what was the size of your AN when treated; when did you have your treatment and did you have any initial post-treatment problems etc.


Best Regards

Derek

[bfriedman]

Hi Derek,

I was diagnosed in 2004 with a 2.1X1.4X1.4 cm. I had treatment within two months because of the sudden hearing loss I experienced in my AN ear. I felt I was getting symtoms and should take some action. Now my AN has increased to 2.6X1.8X2.0 cm but the swelling has slowed from my 1 year MRI at 2.4X1.7X1.7. I have had no other side effects from GK. I should add that  my AN does not seem to be pressing on anything in the area that seems to concern my doctor.

You should ask your doctor if you will experience hearing loss post GK. Mine was already poor, but many people do lose some hearing with GK in their AN ear.

I thought the GK experience was good. I was able to go to a restaurant for lunch after the treatment and go right back to work .

Best wishes,

Betty

[Derek]

Hi Betty...

I am responding to the post by 'bfriedman' (Betty) not to be confused with 'Betty' who commenced this particular thread!

I should have mentioned ( Betty) that my only symptoms are already total single-sided deafness on my AN (right) side and very mild tinnitus. I do hope that your excellent recovery continues and that your next MRI scan produces a good result for you. GK was obviously the right choice for you.

Hi again Bruce...

Thanks for your input which I greatly appreciate and I take on board everything that you have stated. The actual overall increase in the size of my AN since original diagnosis in March 2002 is in the region of 5mm in about four and a half years and it is for that reason that I am inclined to want to continue with 'wait and watch' but since my GK consultation this week I now feel that I am delaying the inevitable?

Being in a similar situation to me Bruce,(albeit I am 62)  I am interested to know if you intend to continuie in that mode until (if your AN continues to enlarge) you approach the 3cm' barrier' which is what I would prefer to do having regard to the salient fact that there are risks attached to GK treatment as you quite correctly point out?

Do you not then run the risk of reducing your potential success rate re the increased size or risk other symptoms becoming apparent by which time they may be permanent such as the SSD and tinnitus which I currently experience?

I should also state that my GK consultant is also a practising neurosurgeon who now specialises in GK therefore at the back of my mind I am still considering whether his advice is truly impartial albeit I would still opt for GK if or when treatment becomes absolutely necessary.

He has also stated that he has personally carried out in excess of 1,000 GK treatment procedures throughout the past 6 years with an overall total success rate of 97% i.e. no adverse effects such as facial nerve damage and the other well documented side effects associated with AN treatment. I quite like those odds!

It is quite a dilema Bruce and whilst it is a personal choice based upon information gleened and what decision the individual ultimately feels comfortable with, it is nevertheless interesting to know the views of others who also have to make the ultimate choice particularly when you only have one opportunity to get it right first time!

Regards

Derek

[bfriedman]

Derek,

Betty and bfriedman are one in the same. I apologize for the confusion as I was having trouble with my password. I wish you all the best..

Betty

[Derek]

Hi again Betty...

Thanks for sorting out that minor confusion and for your good thoughts.
My very best wishes to you for a full recovery.

Derek

[GM]

Betty,

I had GK treatment on my AN in November of 2003 at the University of Virginia (UVA) (Dr. Steiner), my tumor was actually discovered at the Portsmouth Naval Hospital (PNH) here in Virginia.  My tumor originally measured 1.8 cm and it was discovered when I kept failing my annual hearing examination at work. 

I decided to go the GK route because it met my personal criteria:  1) Least amount of trauma as possible, 2) quick return to work, and 3) preserve facial function.   I really didn’t have many symptoms other than tinnitus and the hearing loss. 

After treatment my tumor eventually swelled (over a 2 year period) up to 2.0 cm.  I still have the tinnitus and hearing loss but that’s about it.  My hearing and speech recognition is still about the same as it was before the treatment.  I am currently on an annual
MRI / Hearing exam routine. 

My plans are to watch and wait until I am sure there is something to treat.  I endured much stress dealing with two versions of the MRI reading ( between UVA and PNH), each read the MRI slightly different…just about drove me crazy!!  So, I researched and got a piece of good advice from another doctor that I’d like to pass along:  “I would require absolute proof that your tumor is definitely growing.  I can't tell you how many times we have seen things that were called growing tumor that actually were not in retrospect. A couple of millimeters would not do it for me. We do not require tumors to shrink to call it a success since not all do. If a patients’ is 5-10 years out from treatment with no evidence of tumor growth, I think it is highly likely that the tumor is not going to grow and that is an operative definition of success. I would not be in any hurry.� 

This is the advise that I personally plan to take.  I’ll need definite proof that it’s not “playing well with others� before I decide to re-Zap or take another route.  My gut tells me to re-zap if necessary.  That’s been seconded by the installation of a GK machine in a hospital near my home.  They are working with…yep you guessed it…UVA.

Live your life, and keep an eye on the intruder!   I exercise, run, and enjoy life the best I can. Good luck on your monitoring and keep the faith.  

Gary

[bfriedman]

Dear Gary,

Thanks for your reply. I actually had read your other posts and was very interested in what you had decided to do. It is so important for us to become involved with our own health care. With an AN, terms are not consistant, MRIs are not read the same way etc.—things the uninitiated do not expect from the medical profession. Thanks also for the quote from the doctor you spoke with. I think it is very true.

I am also feeling great and plan to stay that way!

Best wishes,

Betty

[bfriedman]

Dear ANA membes,

I had my yearly appointment at UCSF yesterday and received fantastic news. My doctor (who gamma knifed me) reviewed my MRI film and told me that my tumor was the same size as last year and had not increased in size. He said that my HMO read the MRI incorrectly. They said it had increased and had a surgeon schedule an appointment for me. I actually measured my film the day before and came to the same conclusion.

I would like to back-up Gary's comments about measuring and making sure your tumor is growing or not. I like the idea of getting film instead of a CD because one can physically measure the tumor on the film. It may be an old fashioned method, but it sure works! We all should be able to measure our own scans.

Best wishes,

Betty

[Derek]

Hi Betty...

Congrats on your great news and hope your excellent progess continues.

I'm still 'wait and watch' pending sorting out matters with my medical insurers but I hope to wait until my next scheduled MRI scan next April before making the ultimate decision re the proposed GK treatment.

Best Regards

Derek

[GM]

GREAT NEWS BETTY !!   

  I'm happy that you got such good news.  One thing about having a "AN" is that you quickly learn that having a passive role in your health care decisions is a bad idea.  I actively give input and ask many questions when I see doctors now...for any reason!

Again great news!

Gary

[jreggied]

I am two years post Gamma Knife at Mayo clinic.  My tumor was 2.1 x .8 x 1.8 two years ago, and if you lay the original MRI over the six month over the one year over the two year films there is absolutely no change.  There is also no necrosis in the tumor shown on these films.  I have experienced additional hearing loss, mid range....the audiologist told me the loss was not "statistically significant" but to me it is......have experienced some minor vertigo issues and although it is not visible to look at, I feel some facial weakening around the mouth/cheek and I am drooling at night......anybody else have this?