Author Topic: Top Tips For The 'Watch & Wait' Brigade!  (Read 228627 times)

Jim Scott

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #180 on: February 02, 2012, 04:15:39 pm »
Congratulations, Lisa!  Definitely stupendous news!  :D

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.

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #181 on: February 02, 2012, 06:40:14 pm »
Lisa - as a long time W&W patient (10 years), my eyes actually filled up when I read your note as I can absolutely identify with your feelings.  Hope things continue on this positive note.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Mickey

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #182 on: February 02, 2012, 09:57:04 pm »
WOW!  This is some great news Lisa... Keep on doing whatever your doing. Very inspirational for everyone involved in our  W+W section of living with a AN. Our selection and ideas become more of a great way to tackle our condition. Very happy for you and look forward to the future, Mickey P.S. WOW!

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #183 on: February 03, 2012, 12:04:06 am »
Finding this thread gave me the courage to wait and watch.  I thank you all from my heart.  I will see my doctor at House tomorrow and get the full details.  Stay tuned...
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Jackie

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #184 on: February 03, 2012, 02:09:31 pm »
Lisa,

What exciting news!!! I'll be waiting anxiously to find out those reduced measurements!!!

Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #185 on: February 04, 2012, 10:01:26 pm »
OK.  Here's the skinny.  According to my Dr. at House the AN now measures 1.3 x 1.3 x 1.6 (not sure I have the order right).  Last April and July it measured 1.4 x 1.8 x 1.7.  When the Dr came into the examination room he said," Good news, the tumor is stable, no growth."  I said "That's good news" and he asked me how I was feeling.  We chatted a bit and I asked him what the measurements were because I could see he had something written down.  He gave me the numbers 1.3 x 1.3 x 1.6  and then I asked him what were the measurements before and he said 1.4 x 1.8 x 1.7.  I waited for him to tell me it was smaller but he didn't.  All he said was, "These tumors don't get smaller.  But it's stable and that's good.  We'll do another MRI in 9 months".  I didn't have the written report from radiologist and the Dr didn't have it either, so there is still some information missing.  Hope to get that next week.

When I was first diagnosed  last April  the radiologist had measurements at: 2.0 x 1.8 x 1.7.  But House measured it at  1.4 x 1.8 x 1.7.  I'm waiting to hear what the radiologist's measurements are this time and to also get his "impression" and "findings".

My guess is the Dr. is trying to keep me from getting too excited.  As far as I am concerned 1.3 x 1.3 x 1.6 is smaller than 1.4 x 1.8 x 1.7 and I'm going to enjoy this victory!  Hooray!

Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

mindyandy

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #186 on: February 04, 2012, 10:04:09 pm »
Lisa I for sure would enjoy that information also. Good for you  ;)
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #187 on: February 05, 2012, 05:56:23 am »
Hi Lisa...

You have a very positive attitude Lisa and that is all important when you are in 'watch & wait'. The fact that the little b***** has not flexed it's muscles is a plus factor and stability is what we all aim for with any degree of reduction being an added bonus. Looking forward to continued good news from you.  :)

Best Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #188 on: February 10, 2012, 12:01:29 pm »
Update from Radiologist... measurements before 18mm x 18mm.  Measurements now 13mm x 13mm.  Still waiting for complete impressions and findings.  From what I can tell there is a 5mm reduction.  The next MRI will be in 9 months.  Makes me a little nervous to wait so long...

Derek how much time elapsed from when the AN in your head went from 2.5cm to 1.5 cm?  Sheryl didn't you have a reduction when you were taking the estrogen suppression drug?
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Derek

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #189 on: February 10, 2012, 01:44:41 pm »
Hi Lisa...

An apparent reduction of 5mm in 10 months is certainly worthy of celebration and an extremely rare event indeed if you can discount any possibility that the original dimensions upon diagnosis were inaccurately recorded. 5mm is way outside the usual 2mm tolerance allowed for discrepencies due to errors applicable to equipment or interpretation of the images by the neuroradiologist.

With regards to my personal situation, the MRI scan did not indicate any reduction until the 6th year following diagnosis when, coincidentally, a reduction of 5mm was recorded. This was followed by reductions of 3mm and 2mm respectivly in years 7 and 8.

The current dimension of 1.5cm has been stable since then and my 10th annual MRI is due next month when I remain hopeful that there has been no change albeit a further reduction would be very welcome! ;D

Notwithstanding that there is no change in your symptoms etc, and subject to advice and guidance from your specialist, you should be able to continue in W&W until your next MRI scan in 9 months.

Great to see that Sheryl has finally reached her 10 years milestone in W&W...superb result and very inspirational!

Best Regards

Derek 
« Last Edit: February 12, 2012, 03:10:03 pm by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #190 on: February 13, 2012, 12:00:20 pm »
Greetings Derek,

I'm hoping that the 5mm reduction is the real deal and not an error in the interpretation.  For this reason 9 months seems a long time! For the MRIs, I have made sure to go to the same facility, the same machine, with the same technician and Dr for all 3 of my MRIs in the past year.  The first 5/14/2011 diagnosed the AN and the second 7/14/2011 stated no change, stable no growth.

I have tinnitus that comes and goes but that's about it in the symptom department.  I still hear very well from the AN ear but realize that my hearing could deteriorate.  The surgery only gives me a 50/50 chance to save hearing.  I'd rather take my chances in Wait and Watch.

Thanks again for starting this thread.  It has been a tremendous support.  Sending you shrinking vibrations for your MRI next month!

C'est moi,
Lisa M
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Jackie

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #191 on: February 13, 2012, 03:26:42 pm »
Woohoo Lisa M!!!!

Great news, regarding the shrinking of your intruder!!! Those are ideal results that all of us W and W love to hear and aspire to! Congrats,
and keep up whatever you are doing!!!

Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #192 on: March 04, 2012, 07:28:04 pm »
Hi Lisa and Derek and others - sorry I haven't posted sooner - been enjoying the Florida sunshine for the winter!!!

Lisa - When I was on the estrogen suppression drug (Arimidex), I was stable - unfortunately no reduction.  When I went off the Arimidex, I had a 1 mm. increase which isn't really an increase but more likely a "technical" difference. 

Ironically, I was going to post as I just had another head MRI but before my yearly scheduled one due in July.  I have had a lump in the back right side of my neck (same side as the schwannoma) and it has become more problematic.  It was CT scanned and ultrasounded two years ago and felt to be "muscular".  I went to another ENT and he felt the same way but said he would order an MRI which would give a more definitive answer - completely up to me - he wasn't concerned.  I opted to have it done and he "threw in" the brain-stem tumor too!!  Well, the lump still is described as muscular - heat and Advil help but not long term.  Will probably have to learn to live with it.   The good news is the tumor is still stable at the same size as two years ago with no edema or pressure on the brain stem.  I guess if they could go back to my first MRI ten years ago (November, 2001), it would show about 5 mm increase in that time.  It was originally measured at 9 mm but I was told it seemed to be under-read and was possibly a tad larger.

I am in the process of obtaining the CD and forwarding it to my regular doc in Boston as I'm sure the July appt. won't be necessary now, and I am hoping I can move it up a year from now or longer.  I just worry that as I age, IF this thing grows, I may have other health issues that need to be addressed but for now I am still happy on W&W.

Derek - keep up the race - I'll be glad to stay ahead of you!!

Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

LisaM

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #193 on: March 04, 2012, 10:26:53 pm »
Great news Sheryl!  Hooray for you!


Another question for you... If memory serves me correctly, you do a bit of Transcendental Meditation???  Is this right? 
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

Sheryl

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Re: Top Tips For The 'Watch & Wait' Brigade!
« Reply #194 on: March 05, 2012, 01:39:14 am »
Hi - Seeing that it is 2:37 a.m., I should be the one doing meditation  :o.  I do remember seeing a post but do not remember who wrote it. 
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

 


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