Questions you should ask your doctor

[Tumbleweed]

Here is a list of questions I have developed for deciding what type of treatment and which doctor/medical center should perform the treatment for my AN (an acoustic neuroma is also known as a vestibular schwannoma). I hope people find this list helpful.

Questions for both neurosurgeons and radiation oncologists:
1. What are the tumor’s overall dimensions in mm?
2. How would you treat this, microsurgery or radiosurgery?
3. Why have you decided against the treatment not recommended?

IF RESECTION (MICROSURGERY) IS RECOMMENDED:
4. Which surgical approach would you take for my tumor and why?
   Middle fossa
   Retrosigmoid (AKA suboccipital)
   Retrolabyrinthine
   Translabrynthine
5. How many vestibular schwannomas have you treated using this approach in the past year? Since you began using this approach?
6. Would my vestibular and hearing nerves have to be completely removed on the affected side?
7. Would you opt for near total resection over complete removal of the tumor if it might preserve hearing and reduce risk to the facial nerve?
8. Will I be awake for any part of the surgery, for example to perform brain mapping? If so, will I feel any pain or discomfort?

IF RADIOSURGERY/RADIOTHERAPY IS RECOMMENDED (radiosurgery is one dose/treatment, while radiotherapy is multiple, smaller or "fractionated" doses):
9. What type of radiosurgery/radiotherapy do you recommend and why?
   CyberKnife
   GammaKnife
   Other fractionated stereotactical radiation
10. How many treatments, spaced how far apart?
11. What will be the total biologically eequivalent dose?
12. How many vestibular schwannomas have you treated using this approach in the past year?
13. How many vestibular schwannomas have you treated since you first started using this protocol?

WITH EITHER TREATMENT:
14. What are my chances in percentage terms) for:
Preserving my current level of hearing long-term (at 5 years post-treatment or longer)?
Preserving normal function of the facial nerve (House-Brackmann Grade I or II)?
Preserving normal function of the trigeminal nerve (CNV)(if affected by the tumor)?
Tumor recurrence?
Side effects from the procedure (headaches, hydrocephalus, infection, bleeding, behavioral or cognitive changes)?
15. How long of an observation period, with follow-up MRI to confirm tumor growth, can I reasonably afford to take before undergoing treatment?
16. Do you recommend I have any additional tests before treatment?
17. If the tumor is still growing, what additional neurological symptoms might present before treatment that I should watch out for? Would they likely come on suddenly or slowly? For example, would I likely have some ipsilateral facial tingling or weakness before numbness or paralysis, or might advanced neuropathy occur suddenly?
18. If you weren’t performing the treatment, which medical center and neurosurgeon or radiation oncologist would you recommend to treat me?
19. If there are no complications, how long would my hospital stay be?
20. How long after treatment would it be before I can: A. walk, B. go back to work, C. do strenuous exercise?
21. Will I need to take medications before, during or after the procedure? What kinds?
22. Will you use an intraoperative MRI, Xrays, nerve monitoring or other aids during the procedure?
23. What specialists will be on the treatment team?

[jerseygirl]

Tumbleweed,

Nobody I know of has been awake during the AN surgery but the majority of people have been awake for any kind of radio treatment. Brain mapping is usually done to determine where motor and language areas are in the brain because no surgeon wants his patient to wake up paralyzed and mute but tumor-free! Brain mapping is only done when operating on the cerebrum. AN usually affects  brainstem, crainial nerves and cerebellum on that side. There is no "AN" medication to take but if you were operated on the cerebrum, most neurosurgeons would give you an anti-seizure medicatiion.

I was really concerned about the surgery length if going for microsurgery because I suspect that the amount of time you are under the general anesthesia plays a role in the developement of any cognitive problems. In addition, you might try asking your doctors about the structures your tumor is pressing on/ involves. This will give you a lot of information regrding their proposed approach. Finally, I always asked for references. Hope it helps in your search and the results are spectacular whichever way!

                      Eve

Tw

[jerseygirl]

Tumbleweed,

I was not really clear about meds. Nobody pretreats you but after any open brain surgery they give you steroids, antibiotics and possibly painkillers. Steroids are given to prevent brain swelling and also the facial and hearing nerves. Steroids are also give after radio tretment but I honestly don't know how much. I do not react well (who does) to steroids so one of my questions to doctors was: How long do you use steroids for and how much?

                          Eve

[Tumbleweed]

Thanks, Eve. It looks like I can now clear at least one irrelevant question off my list!

Dr. Chang at Stanford said he would prescribe Decadron (a steroid) after each of three CK treatments, if I were to choose that route.

I was very impressed with Dr. Chang.

[Kate B]

I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.
Here is a list put together as well. The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/

[Esperanza]

Hello Kate,

Thanks for the info.  - I was wondering if you still retained the same level of hearing now?  and do you still have regular MRI's?

I have been told mine is gone forever but I can hope for a miracle....

[Kate B]

Hello Kate,

Thanks for the info.  - I was wondering if you still retained the same level of hearing now?  and do you still have regular MRI's?

I have been told mine is gone forever but I can hope for a miracle....

Hi Esperanza,
I had 100 % going into surgery and retained 80% high frequencies and 50% low frequencies with good word discrimination.  That was six years ago already.  I need to get rechecked but my word discrimination had fallen last year.  After awhile, it is hard to tell what is age and what is a side effect. 

Kate

[Catana]

Tumbleweed,

I know this post is old, but I thought it deserved to be pulled up to the forefront because it's a great list of questions!  I wish I'd had it last week when I had 2 consults!  I'm leaning toward CK with Dr. Chang for my 2.5cm AN. 

I also wanted to say thanks for sticking around here for so long to help others.  I am so grateful for everyone here who has continued to volunteer their time and expertise to this site.  The long-term follow up is so helpful for us "newbies" to see.  I was so touched thinking about this just now that I was actually tearing up!  (Well, I am kind of emotional right now, but still...)

Carrie

PS.  The anworld site does not seem to be updated and their list of questions is no longer there.

[Tumbleweed]

Thanks for your kind words, Carrie. The main challenge I have with continuing to visit this AN forum is that I feel so good after my treatments 8 years ago that I tend to forget I have an AN! I have to schedule visiting the forum in my work planner or I forget to do it. I say this not in jest but to offer honest encouragement to those just starting the journey after diagnosis. With the right doctor, medical facility and treatment, you can regain wonderful quality of life -- to where the AN becomes almost a non-issue.

If you should ultimately choose Dr. Chang for your treatment, know that you will be in the very best of hands. Not only is he eminently skilled and experienced, he is the closest thing to a living saint I've ever seen, placing his patients' health and care first in his daily priorities.

Good luck with your decision and treatment!

Best wishes,
TW

[mcrue]

You might also want to ask Dr. Chang, or whomever doctor you select, if they will personally be overseeing your treatment and care when you fly across the country to see them.

When I asked Dr .Chang this specific question, I was very surprised when he responded that he would not.

He delegated the responsibility to his "team."