Has anyone had radiology for a cystic/ solid AN

[Mary More]

Hi I have an AN that is 2.3\2.6 cm and is cystic and solid and is compressing my brainstem. I'm supposed to have retrosigmoid surgery on October 28. Both my surgeons recommend surgery because in their opinion mine will not respond very well to gamma or cyber knife. I never consulted an oncologist. But I am now I am questioning this decision.
I would love to hear some news
Mary

[rupert]

If you are considering a different treatment choice and opinions on such, I would seek out expert opinions from GK surgeons , not just opinions on this forum.  You should do it right.  October 28 is fast approaching and to get these opinions you will have to make a decision to delay your surgery.  This very same situation happened to me.  I had retro surgery scheduled for months, and then one week before surgery, I had second thoughts. So I postponed my surgery so that I could talk to some other doctors about GK.   I figured if it wasn't a good option I could always reschedule the surgery.  Everyone involved was on board .  Opinions on here a very good, but you need a GK expert to evaluate your situation.

[arizonajack]

Hi Mary,

I agree with the suggestion about consulting with GK or CK specialists.

Meantime, here are some articles I found regarding cystic ANs and the alternatives.

https://www.ncbi.nlm.nih.gov/pubmed/11121639

http://thejns.org/doi/pdf/10.3171/2012.6.FOCUS12200

http://www.sid.ir/En/VEWSSID/J_pdf/118920080408.pdf

[Mary More]

Thank you both for the advise. Arizonajack thank you for the links, I will b defiantly reading then. Rupert thank you for your advise I'm glad I'm not alone in questioning a decision like this.i have made arrangements to see radio-oncologist on Wednesday. I believe that my surgeons are right Meanwhile im wondering if it is really necessary to have this invasive surgery.  I'm reading all I can on the issue. I'm curious who big was your AN and what did you finnaly decide to do in the end
Thanks,
Mary

[rupert]

Sent you a PM

[MDemisay]

Dear Mary,

Eureka! In my weekly ritual of reading the New York Times Sunday Review, I spotted an article that is particularly poignant to you (and to all of us)! It has to do with choosing a doctor it is on page 6 and it is called "Why We Make Bad Decisions" by Noreena Hertz she is a professor of economics at at the University of London and is also the author of "Eyes Wide Open:How to Make Smart decisions in a Confusing World".

It is a startlingly clear read on the problems we all face with selecting a good doctor, I gaurantee a good read. A free reading it, PM me with what you thought about it.

Good luck and I will be praying for you as you go forward with your selection and interview process.

Remember to post often!

Mike

[ASG]

Hi Mary,

Yes, I have a cystic/solid AN, about the same size as yours (mine's larger actually), also pressing on the brainstem, and I chose to have Gamme Knife radiosurgery on 9/20/13 at UPMC w/ Dr. Lunsford.  You can read about the details of my decision making in this ANA thread:

http://www.anausa.org/smf/index.php?topic=19061.0

Like you, the initial surgeons I consulted with recommended either retrosigmoid or translab.  I chose to consult with radiation specialists before making a final decision, and so sent my slides to Dr. Chang at Stanford and Dr. Lunsford at UPMC.  I felt having multiple consultations with different specialists helped me make a decision.  In particular, I told the radiation specialists why the surgeons did not want to radiate, and asked them to respond.  I then relayed the pro-radiation perspective to pro-surgery providers, and asked them to respond.  I believe this gave me some insight into how doctors with different training backgrounds arrive at treatment decisions.

Ultimately, hearing a variety of opinions made me more confident in my treatment choice.  I believe this would be true regardless of whether I chose radiation or surgery.  Now post-treatment, I am sure I have more peace of mind, and no "what ifs", because I took the time to talk to a range of nationally respected specialists with different perspectives.

Please don't hesitate to message me if hearing more about my experience would be helpful to you.

Adam

[Mary More]

Hi everyone, an update. As I said before I was having second thoughts about my surgery on October 28th. Or Wether I would be a candidate for GK or another type of radiation. Lucky for me, my nephew is studying medicine here in Montreal at McGill university and was able to speak to one of his professors who just happened to be the Radio-oncologist at the Montreal Neurological Institute, where I am scheduled for surgery . this Dr. Offered to have a consultation with me on such short notice ( he knew I needed a radio-oncologist's opinion in order to make up my mind and not wonder "what if".
  Anyway, I met with him today, he is such a warm and caring doctor, before I even met him he had already studied my MRI cds and read the reports. He told me that even though my AN was not very large it was already compressing my brain stem quite a bit and had already shifted my brain ( cerebellum ) and because I already had symptoms, he strongly believes that surgery is my best option because I need treatment NOW before my squatter ( tumour) causes serious damage, also cystic tumour don't respond as well to radiation. Radiation although a great option for many, was not for me because it would swell the tumour slightly initially putting more pressure on the brain stem, and that radiation would take to long to get a result (if I did) Time in his opinion that I don't have to waste. Also if radiation didn't work it make a very delicate operation even more  delicate for the surgeons. If the tumour is not fully removed and it starts to regrow then radiology would be a good option for me, but for now I need to get the squatter (tumour) out.

I guess I knew in my heart that surgery was my real only option, I just needed to be sure. All this in a nut shell to say. My squatter is being evicted Monday.

Mary

[kimj]

Hi Mary,
Thanks for the update. I posted a question about cystic AN under the 'pre-treatment' category, and someone kindly pointed me to your question. I too have a cystic AN and was on the fence about which way to go. I saw both Dr. Chang and Dr. Jackler at Stanford, and both thought surgery was the way to go for many of the reasons you just listed. I'm already scheduled for RS surgery on 10/31 at Stanford with Doctors Jackler and Harsh. Reading the posts on this website have truly helped me feel good about my decision, which I just reconfirmed today. Thank you all for honest sharing of your opinion, thoughts and real experiences. I'll report back after my RS surgery. Best, Kim

[kimj]

Mary,
I also meant to tell you best wishes for a great outcome of your surgery on Monday. I'm sending positive thoughts, energy and prayers your way.
Kim

[Mary More]

Hi Kim,
I'm glad my post helped confer  your decision. Like you I am terrified going into surgery. The Lord works in mysterious ways. Last Sunday I attended mass ( which I'm ashamed to say, I don't very often) I noticed the priest had had some surgery on the back of his head. After mass we spoke and he too had a brain tumour removed.then radiation.  He told me he also believed surgery to be my best option. ( it was like a sign from God to help me see clearer. I have to say it helped tremendously to see a man that looked perfectly normal and very pleasant and happy. He reassured me that the recovery isn't so bad, and life is good even with SSD, like he said "you just have to pay closer attention and lean in with the left ear" The Lord works in mysterious ways.   

I wish you the best of luck on your up coming surgery day. Nice choice Halloween positive energy and prayers.

Mary