Retro Sigmoid Surgery is Scheduled for November

[KW]

Hi

My wife is having a Retro Sigmoid Surgery for her AN in about a month.  Her Tumor is 1.5cm in size and it is 1mm from touching the Brainstem.  The doctor did not recommend waiting.  He also said radiation could damage the surrounding tissue. Her current symptoms are 15% useful hearing in her ear.  She has some occasional dizziness and some headaches near her tumor.  Is there anyone who has had this surgery with these prior symptoms.  My main concern would be lasting headaches from the surgery.  Thank you.

[leapyrtwins]

KW -

I've never heard of radiation "damaging surrounding tissue".  Does the doctor your wife saw - who I assume will be doing the surgery - actually do radiation?

The majority of docs are very biased about treatment options.  Those who do surgery, tend to recommend it.  Those who do radiation, tend to recommend it.  It's very important to get a well-rounded opinion and IMO crucial to see a doc who does both so you don't get his/her bias.

Although waiting for treatment might not be a great option for your wife - with her AN touching the brainstem - surgery doesn't have to be immediate.  She'd have time to consult with another doctor (or two) if she wanted to. 

That said, if she is comfortable with her doctor and comfortable with the idea of surgery, then she may want to just go with it.  Treatment option is a personal choice and I'm not knocking hers - I had surgery myself - I just want to make sure she's fully informed.

I had retrosigmoid but didn't have the same symptoms as your wife.  I had diminished hearing and a feeling of fullness in my ear as well as balance issues.  But different people experience different symptoms.  Retrosigmoid has a reputation for causing headaches post op - some of them severe - but I don't experience them.  As with symptoms, post op side effects differ from patient to patient.  There are certain commonalities, but not everyone "gets" everything.

If you or your wife never requested informational brochures from the ANA, please do so - you'll find them very helpful.

Jan

[Jim Scott]

Hi, KW ~

Welcome to the ANA discussion forum.  I'm sorry you and your wife have been confronted with this diagnosis but I'm glad you've discovered the ANA website and decided to register and post your question. Our members are knowledgeable and eager to assist you and your wife with information and support but we're not doctors and do not attempt to dispense 'medical' advice.  However, our many members do have a wealth of practical advice they learned from their own AN experience.  I'm one of them.  

Like your wife, I underwent Retrosigmoid approach surgery to debulk my large (4.5 cm) AN.  I later underwent radiation (FSR) intended to destroy the remaining tumor's DNA.  Both the surgery and radiation were completely successful.  During my initial consultation I had questioned my neurosurgeon about post-op headaches and he assured me that "my AN patients don't have post-op headaches".  He acted incredulous that I even asked.  Fortunately, he was correct.  I suffered no headaches before or after the debulking surgery.  My AN was pressing very hard against my brainstem so my surgery was quickly scheduled.  My neurosurgeon did have to move my brainstem 'a tiny bit' (his words) but this had no ill effects.  The planned follow-up radiation was uneventful.  All forms of radiation will have a slight effect on surrounding tissue but it is very precisely 'mapped' and controlled so the 'spill-over' radiation does little-to-no harm to those surrounding tissues.  My doctor stated that FSR was the 'safest' way to use radiation on my debulked tumor.  I trusted his opinion and because it all worked out quite well, I'm doing fine today, some 4 years later.  I trust that your wife's surgery will be uncomplicated and eminently successful.

Jim  

[CHD63]

Hi KW and welcome to this forum .....

The question of headaches is very valid.  Unfortunately there is no guarantee about them post AN treatment, regardless of choice of treatment.  There are cases of just about every combination.  There are others on this forum who will disagree with me, but IMO the skill of the surgeon or radiation oncologist has a great deal to do with the outcome.  That is why we always urge AN patients to search for the the physician(s) with the most successful treatment of ANs specifically.

In my case my AN was just over 2 cm when diagnosed but was quickly determined to be of a rare fast-growing type.  Because of previous radiation exposure, I opted not to go that route and chose surgery.  I had retrosigmoid surgery at a Duke University hospital and had no post-surgery headaches.  I had many headaches prior to diagnosis/treatment, but I cannot say for certain they were a result of my AN.  The most noticeable symptoms pre-treatment were hearing loss and extreme balance issues.

Hope this helps and have your wife join us when she feels like it.

Clarice

[Syl]

KW:

I had retrosig surgery & do have headaches as a result of it. I rarely got headaches before the surgery. I don't know that I wouldn't have headaches had a chosen a different surgical approach. It's been almost 2.5 years since my surgery & the headache situation is getting better.

My AN symptoms were the hearing loss, fullness in the ear & lots of dizziness.

Best wishes.
Syl

[Lizard]

I agree with Syl, and am in the same boat with her although I had headaches prior to surgery.
Liz

[Funnydream]

Research more would be my advice.

Use google,etc.

Here is a link to a guys blog on these forums. Can't remember his forum name.
http://www.myacoustic.org/home.html   If you read it you will see he opted for radiation.
Here is a link to the Cyberknife forums. http://www.cyberknife.com/Forum.aspx They will be Bias towards radiation.

The way I did it. Was read, cry, read, cry some more, read some more. Till your happy that you know what you need to know.

In my sig you see I went with surgery. And I think surgery is a ugly thing to go threw.

[ppearl214]

Here is a link to a guys blog on these forums. Can't remember his forum name.
http://www.myacoustic.org/home.html   If you read it you will see he opted for radiation.
Here is a link to the Cyberknife forums. http://www.cyberknife.com/Forum.aspx They will be Bias towards radiation.

Hi FD

I hope you are doing well... wishes for continued wellness to you!

FYI, what I highlighted in red....... yes, drs will tout what they know, but... in over 5 yrs that I have been active on the CK forums you noted above, I can certainly count on more than one hand when Dr Medbery has clearly noted for surgery over radiation based on particular situations.  He certainly has not shy'd back from noting to follow up with surgeons if he felt that radio was not an option in certain situations....so, I respectfully disagree with the comment in read.  Can point out the comments made by him if needed.......  No worries, just wanted to share this

Thanks for letting state my 2 cents.
Phyl

[ppearl214]

Hi

My wife is having a Retro Sigmoid Surgery for her AN in about a month.  Her Tumor is 1.5cm in size and it is 1mm from touching the Brainstem.  The doctor did not recommend waiting.  He also said radiation could damage the surrounding tissue. Her current symptoms are 15% useful hearing in her ear.  She has some occasional dizziness and some headaches near her tumor.  Is there anyone who has had this surgery with these prior symptoms.  My main concern would be lasting headaches from the surgery.  Thank you.

Hi KW and welcome. Your wife is very blessed to have you here, doing homework for her wellness.... thank you for being such a terrific "caregiver".

the comment I noted in red....... when radiation is delivered, there is a "minimal" amout of rads that are delivered to the surrounding tissues/brainstem... in the case of CK, I believe it is no more than 10-12Gy of radiation.  What is nice about today's radiation treatments for AN's is that they use highly targeted beams, for this exact reason..... to help prevent surrounding structures/tissues for taking any hit of radiation.  Some does occur but minimal amts.....  just wanted to share my 2 cents.

Again, welcome... glad to have you here and from the looks of things, looks like you are getting terrific inputs from the gang here.

Phyl