Author Topic: Questions...  (Read 2648 times)

JW123

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Questions...
« on: August 11, 2011, 08:20:29 pm »
Basics:

Age: 24,

Schwannoma size: 2.0 cm x 2.7 cm

Side: Left

Symptoms: none as of yet.  I am having my hearing tested soon to test high frequencies. Everything else seems to be normal, according to the doctor also.


Lead to finding the tumor:
I woke up with shadows in the vision of my left eye. And According to my quick WebMD check, It was something I should get looked at quickly, so I did. I saw an O.D. and was told I had a swollen optic nerve.  I was then sent to a neurologist a week later.  The neurologist did some more test on my vision and concluded it was optic neuritis, and requested an MRI (to hopefully rule out MS). Once the neurologist got the results he called me and said they did NOT see signs of MS lesions, but did find a tumor.  Explained that it was Schwannoma, which was a benign tumor. He explained it was about an inch long and that I needed to see an Neurosurgeon, which he helped set up.

What the doctor said:
I met with Neurosurgeon today. This is what I got from our meeting. First we talked about what schwannoma is and what effects it can have. Then we got into the discussion of what comes next and what my options, in his professional opinion, are.

Out of the wait, surgery, and radiosurgery, he quickly ruled out radiosurgery because of the size of the tumor and how young I am.  Next he discussed the three types of surgery. He ruled out Middle Fossa because of the location and size. I should mention, the doctor said that the tumor was butting the spinal cord, but not putting any pressure on it.  He explained both of the other two surgery's and their pros and cons. One had a chance of preserving hearing but had more of a risk to facial paralysis, whereas the other had less of a chance of facial paralysis, but destroys the preservation of hearing (granted only in one ear).
Lastly, we discussed the wait and watch approach. I didn't mention the timing of this, I have accepted a job, and am set to leave the country on August 26th for a little over a year. So this was taken into consideration when speaking to the neurosurgeon. He seemed a little back and forth on the waiting and watching approach. I believe he was just weighing some pros and cons for me, but a  few things he said were: (1) He said if I was 70 or 80, he would go with the wait and watch approach since I wasn't exhibiting any symptoms or side effects, and because of the risk involved in surgery. (2) With someone my age he would recommend going ahead with the surgery. (3) he always hesitates doing a surgery that has risk with someone who isn't exhibiting any symptoms.  (4) I'm at risk of quickly exhibiting symptoms if I wait.

I am now set up to visit another neurosurgeon that would also be apart of the surgery if I proceed with the first surgeon. He is going to do some further test with my hearing and balance.

Questions I have:

What are the true risks of waiting and watching? Is there much harm in waiting a year, since it is so slow growing, and I don't have any symptoms?

How many second opinions should one get? Is there an electronic way to send MRI's to doctors out of state?

How common is facial paralysis during surgery?

and...  Could this tumor have caused the optic neuritis that lead to the finding of the tumor? or is that completely separate?

That's all of the questions that come to mind.  Its kinda been a whirlwind though, stuff happening so quickly. 
« Last Edit: August 12, 2011, 10:47:41 pm by JW123 »
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

Jim Scott

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Re: Questions...
« Reply #1 on: August 12, 2011, 03:33:59 pm »
Questions I have:

What are the true risks of waiting and watching? Is there much harm in waiting a year, since it is so slow growing, and I don't have any symptoms?

I would consider waiting a year but be very alert to the possible onset of symptoms and consider having an MRI at six months from now instead of waiting a year so you aren't surprised by any growth. 

How many second opinions should one get?

As many as you feel are necessary.  The goal is find, not just a consensus, but a doctor that you feel confident using to perform this critical surgery.

Is there an electronic way to send MRI's to doctors out of state?

Not to my knowledge.  However, doctors at HEI (House Ear Institute) in Los Angeles will read your MRI and call you back (quickly) with their opinion.  The service is free with no obligation to use HEI.  Many of our members have used it and were very satisfied.  Use FEDEX for rapid delivery.

How common is facial paralysis during surgery?

It varies but approximately 20% of AN surgical patients develop some level of facial paralysis, post-op, due to the nerve being disturbed.

Could this tumor have caused the optic neuritis that lead to the finding of the tumor? or is that completely separate?

I'm not a physician and cannot answer that question with any authority but because of the similarity of the condition I would suspect the answer is 'yes'.  However, I advise you ask the doctor this question on your next physician consult.

That's all of the questions that come to mind.  Its kinda been a whirlwind though, stuff happening so quickly

We understand.  I went from diagnosis to surgery within a 3-week period and it would have been faster had not a (non-AN related) complication developed along the way.  Don't allow any doctor to 'rush' you into anything.  This is a serious decision that could affect your quality of life and although you need to address the AN, it doesn't have to be immediate.  I wish you success as you pursue a solution to this unwanted medical problem.  We stand ready to offer you information and support.  Please keep us updated.  Thanks.

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.

leapyrtwins

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Re: Questions...
« Reply #2 on: August 14, 2011, 09:54:36 am »
Hi and welcome to the Forum.

Before I answer your questions - from my perspective - let me say that I'm confused as to why your doc ruled our radiaton.

Age isn't really a factor anymore - at one time before radiation was widely used and widely known-  it was, but not anymore.

Also size doesn't appear to be a factor - most docs will radiaton an AN up to 3 cms - but maybe location is (?)

I could be wrong here, but I'm guessing that one of the reasons the neurosurgeon ruled out surgery is because surgery is what he does.  My best advice along these lines is to suggest you see a doctor or doctors who treat ANs with radiation and/or radiation and surgery.  For example, my neurotologist does both radiation and surgery so he didn't sway me in either direction.   You need a well-rounded opinion - which brings us to one of your questions.

You should consult with as many doctors as you need to consult with to feel comfortable.  Lots of AN patients consult with at least 2 doctors; some consult with more; and some strange ones (like me) only consult with one.  I found my confidence and comfort level with the first doc I was referred to and since he offered both treatment options to me, my doc search was done.  We're all different, though, so do what you need to do.

Making your treatment decision is oftentimes the hardest part of the AN journey.

As far as watching and waiting, as Jim said it's improtant to monitor the growth (or lack thereof) of your AN with the periodic MRI - usually every couple of months.  It's also important to seek treatment sooner rather than later if you find you are experiencing symptoms - either new or worse than what you already have - because that might indicate that your AN is growing.

Facial paralysis happens - though not as frequently as it used to.  Most docs use facial nerve monitors during surgery that help them stay away from the facial nerves.  Facial paralysis can, and often does, improve over time.  Facial nerves, unlike hearing nerves, have the ability to regenerate.  For example, during surgery my hearing nerve was severed which left me SSD (single-sided deaf) but the slight paralysis my facial nerve had was cleared up while I was still in the hospital by a dose of steroids.

Everyone's recovery from AN surgery is different, so no one can tell you exactly what you'll experience or guarantee you anything 100%

Like Jim, I'm not a doctor, so I don't want to speculate on the correlation between the optic neuritis and ANs.  I do know though that optic nerves can come into play when ANs are present.  Post op, I had double vision for a few days and others (but not all) on the Forum have experienced the same thing.  Double-vision if you do encounter it generally goes away in time.

You should contact the ANA and ask for their informational brochures.  They'll shed a lot of light on ANs and your treatment options; plus they are written in layman's terms - not a lot of medical speak.  I found them very helpful and a great resource.

Best,

Jan



Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

 


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