Appointment with Dr. Chang on March 2

[AZ JB]

Hi friends,
It's been a while since Bob or I posted, so thought I'd give you an update.  TW suggested Bob email Dr. Chang with his questions & doctor Chang replied that same night at 1 in the morning!!!  After looking at Bob's MRI & other reports, etc., Dr. Chang confirmed that he's a good candidate for CK (although he also does retrosigmoid & translab surgeries -- something we didn't know).  Something else we hadn't heard before, that Dr. Chang mentioned, was that there's a 1 in 500 chance of dying in surgery.  I don't know if that's specific to AN surgery, or brain surgery in general, but I for one don't like those odds for Bob!!  Anyhow, as all you heroes said would happen, it's become clear to Bob which direction to take -- he's decided CK is the way he'll go.  We're flying out for a consult with Dr. Chang & an oncologist on Fri. the 2nd of March.  Bob still hopes to W & W for a while longer, but he'll probably go with Dr. Chang's recommendation on that (BTW - thanks TW, for the great explanation & analogy on what can still happen if you W & W, and your tumor doesn't grow).  So, that's about it.  I must say, once Bob made his decision, it felt like a huge weight had been lifted off his (& my) shoulders.  I also listened to the "wise ones" on this forum & stepped back a little....  Thanks again to all of you for sharing your invaluable info., suggestions, opinions & encouragement!!!!!  This site has this certainly been a lifeline for us.

Judy
   

[mindyandy]

1 of 500 something I did not want to hear 
You also have to keep in mind that CK has its concenquences too. I had CK 4 years ago and now I'm having surgery.

[Jim Scott]

Judy ~

Although I certainly hesitate to question a medical doctor and I cannot validate or invalidate Dr. Chang's assertion that there is a 1 in 500 chance of dying during AN surgery but I suspect that number is wrong.  Of course, all surgery carries risk and much of the risk is predicated on the complexity of the procedure, the patient's age, health and the doctor's skill.  Frankly, when contemplating my AN debulking surgery (9 hours) the thought of dying on the operating table never entered my mind.  I wouldn't let it have access to yours, either. 

Jim

[producer]

Bera in mind that general anaesthesia carries a minimal yet real risk regardless of what type of surgery it is..



chris

[mindyandy]

I believe their is risk for any type of procedure traditional surgery or radiosurgery.

[AZ JB]

Oh boy -- I wish I had never written that last post -- is there any way I can remove it?  First of all, and most importantly, I have to apologize to Mindy, I am so very sorry for causing you more distress and anxiety than you're already feeling.  I can't imagine being in your shoes & having to go through this a second time.  You must be young to have a 4 yr. old & that has to make your journey even more difficult -- my heart hurts for you every time I read your posts.  It was so insensitive of me not to think of you & all the others on here who will be having surgery -- please forgive me.  Second of all, I don't want to shine a negative light on Dr. Chang.  If you read my post, I noted that he did not write that the CHANCE of dying in surgery was directly related to AN surgery, so as Producer noted, it could be anaesthesia or a combination of many things besides the actual surgery (including the health of the patient).  I have cut & pasted Dr. Chang's exact responce to one of Bob's questions in the email he sent -- here it is:  "This is not really a fair question since the side effects of surgery and radiosurgery are different and are not directly comparable.  You will not get an infection or CSF leak after CK, and there is no chance of radiation injury after surgery.  Your neurological exam would be important in determining actual risks.  The big risk in my opinion, is the 1 in 500 chance of dying during surgery, whereas you will not die with CK treatment." (from his answer, I'M ASSUMING Bob must have asked about the side effects of CK vs Retrosigmoid Surgery).  I regret that enclosing Dr. Chang's response isn't going to help Mindy to feel any better, but I also feel I need to defend him.  His reply to Bob was just that -- a reply to Bob, & though Bob's in great health, he is approaching 60, so maybe his age figured in to Dr. Chang's answer.  I don't know, & I hope I haven't made matters worse with this post.  I mainly want to apologize to you, Mindy & I pray your surgery is 100% successful with NO lasting side effects.

Judy     

[mindyandy]

Judy
Such kind words. Thank you. No need to apologize. You were just relaying what Dr. Chang had said. I'm more sensitive right now to anybodys comments so please don't feel as if you were insensitive. I'm fairly yound 34  and this is a very scary moment for me. I wish Bob all the best no matter what his decision is. I respect Dr. Chang however I do believe some doctors are bias. Not Dr. Chang himself but any doctor.
As for Bob how bid is his AN? I think you said 1.6? That really is not that big so he could just wait and do nothing. JMO

Mindy

[PaulW]

Dr Changs figures of 1:500 seems fair.
A very experienced team will have better figures than this, and the risk of death on smaller tumours is also less.
If your tumour is less than 3cm, and you choose a very experienced team, death rates are extremely low.
However inexperienced doctors, low case load doctors or hospitals have much higher mortality rates, which brings up the average mortality rate significantly.

Its worth taking a look at this article, showing death rates from AN excision in the US is 0.5%
http://www.ncbi.nlm.nih.gov/pubmed/21856684

There is a paper getting around somewhere showing that a surgeon needs to do around 15 AN removals a year, to remain proficient, and that it takes around 50 AN surgeries before the surgeon produces his best results.

Choosing the right surgical team is very important when it comes to AN removals

[AZ JB]

Mindy, thank you for letting me off the hook so easily. (-;  I still feel badly though, & will certainly be more careful in future posts.   It's understandable that you might be a little extra sensitive these days -- I know I would be the same way.  Hang in there dear girl, & know you now have friends in AZ praying for you.  Bob's AN is 1.4 by .9 (I think that's the second number), so yes, it's still in a range where the surgeons he's talked to feel he's safe to W & W for now.   

Paul W. -- Bob & I appreciate your attaching the article.  We're so grateful for those of you who've paved the road before us & are willing to stay on this forum & share your info. with us Newbies.  The article you attached made Bob feel even more confident that he's picked the right procedure for himself, & the right surgeon to do it, & I'm sure it will help other new forumites in their decisions & also be reassuring to those like Mindy, who will be having surgery performed by an esteemed surgeon. 

Judy



 

[mindyandy]

Judy your so sweet. Bob is very lucky to have such a kind person as his wife  Thank you
I feel good knowing that I have Dr. Friedman and Schwartz as my surgeons oh course I'm still nervous.

Mindy

[Tumbleweed]

Just now saw this thread. Judy, I'm glad I was able to help Bob. I chuckled when I read that Dr. Chang answered your first email to him at 1 A.M.; that's so much like Dr. Chang. He answered my first email within two hours -- on New Year's Eve! I hold him in the very highest esteem.

Like Paul, I think Dr. Chang's assessment of the risk of having surgery is probably accurate. After all, Dr. Chang is also a neurosurgeon, and he does recommend and perform surgery on ANs and other brain tumors when he thinks it's the best option for the patient. But a 1-in-500 chance of dying on the operating table seems like a very tiny risk to me. And with Mindy having Drs. Friedman and Schwartz heading her surgical team at HEI, her risk is certainly waaaaay smaller than that; those doctors are some of the very best in the country for removing ANs. Before I had CK, Dr. Chang said my risk of permanent facial paralysis from the procedure was about 1% (1 in 100); that put the possibility of that happening completely out of my mind.

It is absolutely critical that people seeking treatment -- any type of treatment -- for an AN seek out the best doctors and medical facilities they can find and afford. Do that, and the relative risks for any and all problems associated with the procedure go way down.

Judy, Bob is in terrific hands. Put your trust in Dr. Chang. There's a reason why many hundreds of people have gone to him for CK. He is arguably the most highly qualified doctor in the U.S. for treating ANs with CK. Good luck with your consultation on March 2nd.

Best wishes,
TW

[ash]

Judy,

Please update me on how everything has gone, I have been accepted by Dr. Chang for ck and am nervous.

Sincerely, Bill

[Tumbleweed]

Bill, I just want to assure you it's normal and okay to be nervous about getting CK, even with such an amazing doctor as Dr. Chang on your team. I was petrified right up to the moment the procedure started (and very nervous during it), but I had outstanding results. So, the thing to take away from this is that your nervousness does not portend anything. You're just nervous, and that's normal. The odds of your having a very successful outcome are huge.

Best wishes,
TW

[AZ JB]

Hi Bill,

I haven't been on here for quite a while, so just now saw your post.  Our meeting with Dr. Chang was ok -- we probably had our expectations set too high.  The whole thing seemed unorganized -- kind of like we caught them by surprise.  Having flown in from AZ, we thought they would have been more prepared to see us.  First an intern came in for a long time & asked questions & explained things, then the oncologist came in & went over the same things & asked the same questons, then the nurse practitioner & finally Dr. Chang.  When Dr. Chang first came in, he thought Bob had already been there the week before & wasn't familiar with Bob's records.  All that being said, we both liked Dr. Chang very much & though we didn't learn a lot more, it was important for our peace of mind to have a consult before moving ahead with the CK.  One thing Dr. Chang said that made Bob decide to go ahead with the procedure sooner than he'd first thought he would was that if you don't have symptoms (such as balance issues) before the CK, you are unlikely to get them afterwards.  We hadn't heard that before & I don't know if there's proof of it or just their observations, but it was enough to make Bob decide to get it done.  His plan was to schedule for mid May, but he unfortunately developed another condition that's forced him to delay it.  He's been in contact with Dr. Chang (who, by the way, is very quick to respond to emails), & he confirmed that this needs to be resolved &/or under control at least before Bob moves ahead with CK.  It seems to me that's another argument for getting it done instead of waiting & watching.  At 60 (just turned on Sat.), Bob is very healthy & fit, & wasn't dealing with any other medical issues at the time of our appointment.  You just never know what's in the future that might prevent you from being able to have it done when you want, & while being forced to wait, the tumor could grow to where you're no longer a candidate for the procedure.  Sorry for the rambling....  Long story short -- thumbs up for Dr. Chang & Stanford.  How are you doing Bill, have you met with Dr. Chang yet?   

[ash]

Trip paid last night, leaving in less than 2 weeks. Thanks