It's growing.... and hanging tough in Boston

[ppearl214]

Hi all... I know it's been a while but things have been so hectic, so thought I'd give you an update from me.

I just had my 3rd MRI done (last MRI was done Aug, 2005, this one, Feb 2006) ... the stupid thing/AN grew from 5mm x 7mm now to 6.7mm x 9mm.   MRI report shows it now extends slightly beyond halfway in the left IAC and now extends into the CP (Cerollopontine) angle region.

I think I am now a walking medical encyclopedia.... 

Anyway, met with Elizabeth Klaus at Brigham and Women's Hospital in Boston back in August, 2005.  At that time, based on the films and size of the growth (not sure if you all remember, but I was also diagnosed with Chiari I Malformation at the same time), we decided on a wait and hold at that time... will meet with her in 3 weeks to discuss this recent scan. 

Had my baseline hearing test done with minimal diminish of hearing in left ear.  Still experiencing some facial numbness but not facial paralysis.

Meeting with Dr. Klaus in 3 weeks to review the films and report.  Now, in 2 weeks, I turn 45.  (terrific bday present, eh?)

Anyway, I've heard that some, at this size, are removed....I've heard that 1cm is usually the point that surgery is determined.  Dr. Klaus and I had agreed that: 1) based on my age, 2) based on the size of the growth back in August and 3) based on the minimal facial numbness I am experiencing, that we would wait and hold.

So, to you all....

1) Has anyone heard of an AN growing fast?
2) Has anyone have/had an AN this size and what treatment (or lack of) have you opted?


At this point, really not sure what to think or what road to take. I have complete faith in Dr. Klaus (I have the CD/films, so will review carefully in 3 weeks) but not sure if at this point, should I contact House Clinic or ?

Any and all thoughts truly appreciated.
Thanks and bless you all!

Phyl

[Kathleen_Mc]

Phyl: Although every doctor I have ever spoken to has told me these tumors are slow growing they also told me that they cannot understand how at age 23 I had one that was so large so I really believe they can have "growth spurts", although I have never read anything to support this. I believe a car accident I was involved in not long before the tumor was found may have cause the tumor to grow at a faster rate but who really knows. My tumor regrowth grew very slowly over the 5 years in was monitored, some years there was not any measurable growth and others .5 - 1 mm. Kathleen

[jcinma]

Dear Phyl,
I had surgery in Nov. 1996 for a 1cm AN, total removal or so we all thought.  A follow up MRI a year and a half later confimed it.  I was diagnosed with a 3cm AN in Sept. 2004, so in approx. 6 1/2 years I went from nothing to a 3cm.  My opinion is that all the hormones I had to take for uterine fibriods had a play in the growth-years ago the medical community didn't think that the AN was hormone receptive, they are now beginning to rethink that according to my ENT
Jane

[targa72e]

Hi Phyl,

I was diagnosis last year with a small AN (2 months before my 40th Bday). The original MRI shows 4mmx4mm and the latest (Dec) shows 5mmx5mm. Based on what I have read the margin of error on different MRI is +/- 1-2mm. I will have another MRI in 6 months and if the result shows continued growth I will plan for treatment. Currently my symptoms are hearing loss (50DB, 68SRT) tinitus, full feeling in ear, dull ache on AN side but no facial problems. I think the general rule is that as the AN approaches 10mm that the risks of doing nothing are similar to treatment. Also the results for hearing preservation with surgery start to drop above 10mm size. I have decided that I would like to keep the hearing I have and if the next MRI shows continued growth I will not wait any longer. With the risk of loosing my hearing with either surgery or radiation running at 30-40% I want to be sure the tumor is growing before jumping into treatment, as it is not risk free. I have not decided what method of treatment I will have but today I am leaning toward surgery. My reason is that emotionally I found the waiting the last 6th months very hard. I am not sure that I would deal well with always waiting for the next MRI to see if there was growth. I personally feel that with surgery I have a better chance of emotionally putting this behind me. 

John

5mmx5mm waiting

[shoegirl]

Phyl,

Hi, I have been told that each AN growth is different and the slow grow quote of "1 mm per year" is more of an average.  I found my AN by accident during a followup MRI for another medical issue.  While researching treatments and drs. I got copies made of an MRI from 3 years ago.  The AN was there but the drs. missed it.  It was very small and grew significantly over the course of 3 years.  My drs. recommended treatment sooner than later based on this established "fast" growth rate.  During the 3 years I had 2 pregnancies and nursed.  I often wonder if this had anything to do with my AN growing so fast.   I have been told no but I am not completely convinced. 

On the flip side I have talked with people whose AN have stayed the same size and others whose AN growths are everywhere in between.  I really think each situation is unique.

I just had Cyberknife done in December.  And so far no hearing loss.  I go for another checkup in March and will get my first post-CK scan.  Keeping my fingers crossed.  My other option of course was surgery but due to location and size I would have lost all of my hearing in my AN ear.  I really wanted to keep my hearing as long as possible - so waiting for the MRIs is a small price for me to pay.  There are no guarantees but I am hopeful.  I wish you all the best in your treatment and recovery.

Suzanne

[ppearl214]

Suzanne, John, Jane and Kathleen,

I cannot thank you all enough for all of your thoughts and inputs on my scenario and for sharing your's with me.  Such a vast array of growth sizes, rate of growth, potential reasons, etc....  I can share that I spoke to Dr. Brackmann's secty at the House Clinic on Friday. Dr. Brackmann will take a look at the MRI notes and films and hoping that his expert (2nd) opinion will compliment whatever Dr. Klaus tells me in 2-1/2 weeks will help me decide what do do from here.    Some other issues now with the Chiari I, so (unfortantely), other things have to now be taken into consideration for my AN decision (good link for the Chiari 1 here:  http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm)

It amazing that the women here note potential hormonal relation between the AN and their "systems". I do have some hormonal issues (unrelated to female hormones) going on, so this certainly does raise a flag with me.... and I thank you all for sharing this with me....

Will await follow up from Dr. Brackmann (suppose to speak to him tomorrow/Monday), so am getting a little anxious to get his thoughts on this... and will certainly keep you all updated.

Sending warms hugs to you all in hopes that you are well, healing well (hang in there Suzanne) and will keep you all updated on Dr. Brackmann's and Dr. Klaus' updates.  You all are terrific and I thank you.

P.S. Jane, seems we are both in MA... if you are local, would love to chat with you (phone or otherwise) regarding local dr's... you can PM/email me bere if interested... )

[ken]

Hi I have a 7mm An, I am going to have proton radiation at loma linda u starting feb 13 th I know thay have a proton generator in boston have you looked into that treatment? I am also 45 but surgery was just to scarry with all the possable side affects. good luck Ken

[ppearl214]

Hi Ken and thank you so much for sharing this with me/us..... I haven't done enough research on Proton generator procedure but more than likely, as you note, Mass General Hosp or Brigham/Woman's more than likely have it (I believe MGH has it if I remember the conversation I had with Dr Klaus during my last appt...) will definately check into it... please -- good luck with your treatments! Will keep you in my thoughts and sending good wishes for your treatments!

FYI all... I just hung up the phone with Dr. Brackmann at the House Clinic... he has copies of my MRI reports and reviewing them now (I had to fill him in on other medical issues besides the Chiari I and AN), so he told me he would review the reports and call me back... sounds like a terrific man!  Looking forward to talking to him next to "pick his brain" (ok, hit me for that later....) and then meeting with Dr. Klaus to help make decisions.....

Thanks again all for reaching out to me and helping me feel not alone....

Hi I have a 7mm An, I am going to have proton radiation at loma linda u starting feb 13 th I know thay have a proton generator in boston have you looked into that treatment? I am also 45 but surgery was just to scarry with all the possable side affects. good luck Ken

[lmurray69]

Hi Phyl,

I John, You do have  a small tumor, mine was 6mm then 7mm now 9mm they say that it is not growing but i got a copy of all myMRI  and I measured it and it was growing . Now I had radiation a year ago this month. I wish i had taken the surgical aproach..I am have Little strokes,TIA's they say that they are not from tumor .but the neuro dr cant find a thing wrong with me. that could cause the problem. I want surgery but until they find outwhat is happeninng to the tia the neuro wont operate..

[ppearl214]

Do they feel the radiation is causing the TIA's?  I can understand if the surgeons are leary of touching because of the TIA's... have you consulted a cardiologist for this issue?  I ask because my oldest sister had to work with her cardiologist for her TIA's that began a few years back (she's only now 51 yrs old).  If they can get the TIA's under control, then maybe they will rethink the surgery for you.

Sending hugs and good vibes as always!

I John, You do have  a small tumor, mine was 6mm then 7mm now 9mm they say that it is not growing but i got a copy of all myMRI  and I measured it and it was growing . Now I had radiation a year ago this month. I wish i had taken the surgical aproach..I am have Little strokes,TIA's they say that they are not from tumor .but the neuro dr cant find a thing wrong with me. that could cause the problem. I want surgery but until they find outwhat is happeninng to the tia the neuro wont operate..