Top Tips For The 'Watch & Wait' Brigade!

[LisaM]

Hooray!

[Mickey]

Thanks Guys....  Derek, You have made a big impact on me starting this W+W Brigade board.  Your nice way of writing and explaining things was very helpful with me in choosing this way of treating my condition.  I thank you! and hope whatever little bit I may have said here may have helped someone as much as what you have helped me.  Best wishes, Sincerely, Mickey 

[MG]

Hi everyone,

I saw my doctor this week and he said that I should have radiation because my AN was getting close to the brain. The words he used were" not quite kissing the brain but close". I asked him how soon and he said he would do it within a year. I am getting a slight fluttering in my lip on the AN side and he was concerned with that.
I am very sad that I can't remain on W&W but that's the way it goes sometimes. Now my journey begins in looking for the right radiation therapy for me. Combing the internet and ANA forum for answers.

Good luck to all!
MG
 

[keithmac]

Hi everyone,

I saw my doctor this week and he said that I should have radiation because my AN was getting close to the brain. The words he used were" not quite kissing the brain but close". I asked him how soon and he said he would do it within a year. I am getting a slight fluttering in my lip on the AN side and he was concerned with that.
I am very sad that I can't remain on W&W but that's the way it goes sometimes. Now my journey begins in looking for the right radiation therapy for me. Combing the internet and ANA forum for answers.

Good luck to all!
MG
 

I'm really sorry to hear that outcome and I expect I may also be in a similar situation one day.  Good luck researching which treatment to go for - there's lots of information and experience on this website to help your eventual decision.

[Derek]

Hi everyone,

I saw my doctor this week and he said that I should have radiation because my AN was getting close to the brain. The words he used were" not quite kissing the brain but close". I asked him how soon and he said he would do it within a year. I am getting a slight fluttering in my lip on the AN side and he was concerned with that.
I am very sad that I can't remain on W&W but that's the way it goes sometimes. Now my journey begins in looking for the right radiation therapy for me. Combing the internet and ANA forum for answers.

Good luck to all!
MG
 

Hi Cathy...

So sorry that you did not get the news you hoped for but on the positive side you still have a year to monitor your situation. Did your Doctor actually confirm that there was a definite growth spurt on this occasion and verified by your recent MRI scan and neuroradiology report? If you have been unduly stressed of late then the 'fluttering' lip syndrome may well be attributable to fatigue and anxiety which is fairly common. With regard to your AN apparently 'getting close to the brain', in my personal situation the AN has been contacting with my brainstem since diagnosis over 13 years ago but not compressing it. This aspect has not caused me any particular problems.

Do keep your options open Cathy and perhaps consider a second professional opinion to assist with your deliberations. Very best wishes for an eventual successful outcome.


Best Regards

Derek 

[MG]

Keithmac,
 Thanks for the good luck. I wish that for you also. Maybe you will be able to remain on W&W.

Best of luck,
Cathy (MG)

[MG]

Hi Derek,

   In answer to your question , yes, the doctor did note that there had been 4 mm of growth in this last year. He showed me my first MRI and then the recent one. Quite a difference in size. Your comment about your AN being close to your brainstem was enlightning to say the least! Plus the lip quivering due to stress made me feel better also.    I appreciate your positive comments. I think I will stop worrying about this now and keep it on the back burner for awhile. Thank you Derek.

Best Wishes,
Cathy

[Derek]

Hi Derek,

   In answer to your question , yes, the doctor did note that there had been 4 mm of growth in this last year. He showed me my first MRI and then the recent one. Quite a difference in size. Your comment about your AN being close to your brainstem was enlightning to say the least! Plus the lip quivering due to stress made me feel better also.    I appreciate your positive comments. I think I will stop worrying about this now and keep it on the back burner for awhile. Thank you Derek.

Best Wishes,
Cathy

Hi again Cathy..

Apologies if I misinterpreted your post on the 27th June re your recent visit to the Doctor whereby I believe I mistakenly thought that your Doctor had indicated in his comment that your AN was 'getting close to the brain' indicating there had been an increase in size ADDITIONAL to the 4mm which you had previously referred to in your post dated 3rd June. If there has been no such further increase then I would definitely (as you say) 'keep things on the back  burner for awhile' and you may well get a hopefully pleasant surprise at your next scheduled scan which will greatly assist with your ultimate treatment deliberations. No need to respond to this post Cathy.

Best Regards

Derek

[Derek]

Hi all...

Regular 'forumites' will be aware that upon diagnosis in 2002 my AN measured 2.5cm and that following extensive research and acting upon professional advice, including assessing the risk factors, I decided to opt for the conservative ( W & W ) treatment strategy.

Throughout the ensuing years my AN has not had any increase in growth, I have had no increase in symptoms and indeed there has been an abatement of my symptoms and a decrease in size to it's current 1.3cm as of the MRI scan earlier this year.

I had a recent review with my consultant who indicated that the significant decrease in the size of my AN had not occurred until the 7th year following the initial diagnosis. For those currently subject to W & W and those contemplating  this course of action I thought it may be helpful in furtherance of your deliberations if I enlightened you as to the actual timing of events particular to myself. I firmly believe that professional guidance, a strong will power / self belief and a healthy lifestyle / diet have worked for me notwithstanding perhaps, an element of luck as I head towards my 14th anniversary   

Best Regards

Derek

[ANGuy]

Thanks for the informative followup and continued good luck.

[Sheryl]

Great News Derek - I'm still chugging along ahead of you.  Year #14 in November!!!

Hubby, though, had a stroke and is currently in rehab.  Improvement signs are slow but steady.  Hopefully he will return to baseline.  At least the recurrent meningiomas are behaving.

Sheryl

[MG]

Good news Derek!
 After seeing the Radiation specialist this past week, I have decided to stay with W&W for another year. My balance in this past year has gotten much better and I now can drive again without getting dizzy!   I guess my right side is taking over for the left. I will have another MRI in about 6 months to see if I have anymore growth. My quality of life is okay right now and I know once I get treatment my quality of life will go downhill fast.

Sheryl, sorry to hear about your husband. I hope he has a good recovery. Wow, 14 years ! Keep on going!


Best Wishes,

MG

[LisaM]

Wonderful news Derek.  Had you not started this inspiring thread, I shiver to think what path I might have taken.  2.5 to 1.3.  FANTASTIC!

[Derek]

Thanks for your collective kind comments....even us 'long termers' still need the motivation, encouragement and support of those who really know what this constant battle is all about

Sheryl... so sorry that Larry is having such awful problems but pleased to note that he is making steady progress in his recovery. My thoughts and wishes are with you both for an eventual successful outcome.

Best Regards

Derek
 

[mcrue]

My quality of life is okay right now and I know once I get treatment my quality of life will go downhill fast.

MG

MG....I've heard from local AN support group members your age who had successful Cyber Knife radiation with Dr. Chang with no complications other than "being prone to fatigue."

Your quality of life may stay the same or improve as well.

Thinking positive.