Decided on surgery but afraid of facial paralysis and confused about surgeon ???

[MrAK82]

Hi all,

I was diagnosed a month ago with vestibular schwannoma on my right side. It is 11.87 mm so a small tumor and many doctors are recommending radiosurgery but at the age of 31, don't want this damn thing in my head for the rest of my life and also a risk of future cancer so decided to go for surgery. Already seen two cancer cases at home so would prefer not to go with that myself in future

1) I am right to think this way or no?

2) Afraid of possibility of having facial paralysis if something goes wrong during surgery, how big are the chances of that?

3) Should I chose Translabyrinthine (back of the ear procedure) or Middle Fossa (top and front of the ear procedure) ? My tumor is small and can hear 70% from the right hear with only 55% understanding but yes I can hear from right ear so it is not useless at the moment and would like to save whatever is remaining presently.

4) I live close to San Francisco and have families in Seattle and in LA so have luxury of either going to HEI by doctor Marc Schwartz or stay local and get it done by UCSF by Dr. Philip Theodosopoulos (previously worked at Mayfield Clinic in Cincinnati) or in Seattle with Dr. Douglas D. Backous at Swedish ? BTW, already seen all three of them in person and all three are fantastic but confused with whom to go to for surgery?

Any help or answer or suggestions to above questions or your experience will be highly appreciated.

Thanks and Happy New Year to you all!

Amit

[Jim Scott]

Hi, Amit ~

I believe the risks of developing cancer from radiation treatment for your tumor are infinitesimal -  but I also understand your desire to be rid of it, for good and, at 31, not take even the slight risk of developing cancer over your lifetime due to radiation that you don't absolutely need to absorb. 

I don't have any doctor recommendations but if the surgeon you chose is amenable to it, I would seriously consider the Middle Fossa surgical procedure.  Please keep in mind that the size and exact location of the tumor is the deciding factor behind a surgeon's preferred choice of surgical approach and the Middle Fossa option may or may not not be possible. 

All AN patients are concerned about possible facial paralysis following surgery.  I certainly was - and made sure my doctor knew it (I did not experience any facial nerve damage).  However, the chance of facial paralysis from AN removal surgery is relatively small, but real, all the same.  The surgery is very 'delicate' and requires a surgical team that are familiar with any possible obstacles and will know the best way to avoid damaging the facial (7th cranial) nerve.  Nerve monitoring is now pretty much standard during AN removal surgery and helps the doctor know if and when he is disturbing the facial nerve in a way that could damage it.  In some cases, the doctor will choose to leave a small portion of the tumor on the nerve so as not to risk serious facial nerve damage.   These are issues you would want to discuss with the physician you ultimately chose, prior to the surgery.   

My neurosurgeon chose to perform a debulking procedure on my large (4.5 cm) AN, severing it's blood supply in the process then radiate the remaining tumor to destroy it's ability to regrow.  Both procedures went very well (no complications) and were successful.  That was 7½ years ago and today, life is back to normal and I'm doing fine.  My experience tells me that selecting a doctor with solid experience in AN removals is crucial as well as the patient having full confidence in their doctor.  I expect that other posters with different experiences will have more suggestions for you.

Jim

[joanna_an]

The risk of the tumor turning malignant after radiation is really rare.. 1 in 1000 up to 1 in 10000.. I wouldn't worry about that.. If you want it out of your head that's up to you but it can regrow after surgery as well.. Regarding the risk of developing cancer, you should have a look at these stats:

http://www.cancer.org/cancer/cancerbasics/lifetime-probability-of-developing-or-dying-from-cancer

You're far more likely of dying from other type of cancer than the radiated AN..

But hey I heard researchers found a way to reverse ageing in mice, so maybe there is hope for a cure for cancer and other diseases somewhere down the line:
http://www.abc.net.au/news/2013-12-20/scientists-develop-anti-ageing-process-in-mice/5168580

Joanna.

[leapyrtwins]

 If you want it out of your head that's up to you but it can regrow after surgery as well..

  True, but it's highly unlikely.  If your AN is completely removed, chances of regrowth are less than 2%.


Amit -

I can relate to your desire to have the "damn thing" out of your head.  This was one of the factors that lead me to surgery.

As far as radiation goes, there is no evidence that it will lead to cancer down the road.  This is something that docs used to think would happen but that changed years ago.

Facial paralysis happens, but docs do all they can to avoid it including not getting too close to the facial nerve during surgery (they monitor the facial nerve with a machine). 

If you want to save the hearing you have, your best bet is mid-fossa approach; translab typically takes away all your hearing.  As Jim noted, not all docs do the mid-fossa approach and whether or not you are even a candidate for that approach depends on the size and location of your AN.

Lastly, I think all the docs you mention are equally good choices.  All have good reputations, are experienced, etc.  You can't go wrong with any of them.

Good luck,

Jan

[kcarloy]

The Drs can give you their own stats on facial nerve damage. As well as the experience of the surgeon, its also nice to go where you will be cared for by experienced nurses, aids, that care for a lot of AN patients. They know what problems look like and when to call the Dr. You'll make the right decision, good luck. I have no complaints at all of my care at St Vincents and the House Drs.

[TexasSprinter]

Amit--happy new year to you, too.  Whatever decision you make for yourself will be the correct one.  For me, I elected surgery over radiation because (i) I wanted the tumor out (couldn't stand constantly thinking about it), (ii) I understood that if I had radiation and it didn't work, the risk of complications would go up in a subsequent surgery due to scarring from the radiation, and (iii) even though the chances were in all likelihood negligible, I also was afraid (even if irrationally) of the risk that radiation would cause the tumor to become cancerous down the road.  As for middle fossa v. translab, I've had both.  I chose middle fossa for Dec. 2012 surgery because I wanted to try to preserve my hearing (which I think was comparable to yours) and middle fossa gave the doctors the best chance.  Unfortunately, I lost my hearing during the surgery, and because my facial nerve was "splayed" or stretched out over the part of the tumor the surgeons had access to, they could remove only a small portion of the tumor without undue risk to the facial nerve.  I tried watch and wait for 12 months then had translab in Dec. 2013.  Translab gave the surgeons much better access to the tumor, which was removed (98-99%) without complications.  I had complete confidence in my surgeons (same team for both surgeries) and am forever grateful for their skill and care. 
Best of luck to you on your decision. 
Scott

[Barb909]

Hi Amit,

It was so interesting reading your post, as I have a tumor about the same size at this point, and have also seen Dr. Backous in Seattle, Dr. Theodosopoulos when he was still at Mayfield Clinic as I have family in Cincinnati, and talked with Dr. Friedman at the ANA Symposium in Cincinnati while he was still at HEI. As you also stated, they are all so good and experienced that you can't make an error in choice and we are so lucky to have access to such great doctors in places where we live or have family! If I decide on surgery in the future, I plan to have either Dr. Backous or Dr. Theo. (As you stated, Dr. Theo is now in SF where I also have family.) Pretty sure I would stay here at home in Seattle with Dr. Backous, and feel 100% confident with him and with the care at Swedish. All of these doctors are top notch, and none of them would practice at a place where their patients do not get excellent after care.

All of these doctors mostly agreed in my diagnosis, telling me about the same thing: smallish tumor and because of it's location saving my hearing is pretty much at 0%. One of them said to me, "I never say 0%, but if I did, I would say it to you." I have also seen Dr. Chang at Stanford to talk about CK. They all agreed with W & W as long as I monitor with MRI every year or less. My only symptoms are a bit of hearing loss and tinnitus. So when I think about surgery and losing my hearing and the balance issues that almost always follow, I am happy to wait and enjoy having hearing as long as I can.

These decisions can be so confusing. You may have made yours already, but either way, again, I think you cannot make a bad one. Let us know how you are! Good luck to you!!

Barb

[kcarloy]

I am 6wks post translab, thankful everyday I had the translab. I am back to normal life, work, recreation. I'm 55yr but wanted to get it gone when it was convenient in my life, and not have it suddenly affect me at an inconvenient time. Make the decision that feels right to you! Karen

[MrAK82]

First of all - THANK YOU all for your replies. It is a different feeling to read replies from the people who are or were in my shoes. Thank you once again.

Yes, I have decided to go for a surgery as just couldn't stand the feeling of having something in my head for next 30-50 years (whatever God has written for me). I am going with HEI with Dr. Schwartz and Dr. Slattery. Read so much about St. Vincent's and HEI that they became my first choice. My second preference with the doctor and the hospital was Swedish in Seattle.

Leaving for surgery tomorrow and the big day is this Thursday the Jan 30th. Still confuse about Middle Fossa or Translab but will see doctor on 29th and take their suggestions/help on taking this decision.

I saw 6 different hospitals and doctors on the West coast:

1. Swedish, Seattle. Dr. Douglas D. Backous was fantastic suggested for surgery. Middle Fossa.
2. Palo Alto Medical Foundation, Palo Alto, CA - Radiosurgery.
3. HEI - Dr. Slattery. Talked to Dr. Marc Schwartz over the phone. Both suggested for surgery. Asked me to get VBN (I think) and ABR test and from tests result they are leaning more towards Translabyrinthine approach.
4. UCSF - Dr. Philip Theodosopoulos, was leaning towards radiosurgery.
5. UW - Surgery, Translab
6. Stanford - Dr Chang. Radiosurgery but if I want he was okay to do surgery too and would have preferred Middle Fossa.

Loved Swedish and HEI. Wouldn't have gone with rest of the 4 as didn't find that comfort in them to give me inner assurance but I am sure they all are fantastic as well. Just I did not feel comfortable. Hospital wise, staff wise hands down with Swedish but HEI has more experience with this kind of surgeries, they do hundreds of these.

It is very preliminary but hated the financial policies of HEI. I don't like to give my SSN to hospitals and have damn good insurance through my employer but they literally forced me to give SSN during my initial visit. I got a call from them last week and they told me that they checked with my insurance and have a small amount of deductible to meet for this year and $1000 deposit which I have to pay before the surgery. My insurance has already confirmed with them about taking care of all my expenses and everything but then also HEI wants me to make the deposit and meet the deductible and can't wait to see how much insurance covers. I even told them that because I got so many pre-surgery lab tests and ABR and VBN tests done, I would meet the deductible so I am okay to make the deposit of $1000 but wait for deductible as when they will file my insurance everything should be approved by insurance. If they would have agreed to this then I will not have to go back & forth with them later on to get refund which I paid as deductible. I guess, I have to go back and forth with them in a few months to get my few hundreds back from them.

It is already hassle to go through all the surgery and recovery that you have to be on the call with them to get refund. They are getting 100s of thousands of dollars from my insurance but want to make sure I don't take the deductible amount and run away when they have my SSN with them.

Anyway, I will definitely post my post-surgery review, comments, update for all of you. Thanks and please keep me in your prayers

Regards,
Amit

[kcarloy]

Hope you had a good nap during surgery, looking forward to hearing how everything went. Then on to recovery! Karen

[MG]

Prayers coming MrAk82 ! Best of luck with your surgery and recovery!
MG

[MrAK82]

Yay!!! Out of hospital and staying local for a week before they clear me to go back home!!

1. Surgery was good, it looks like they removed 100% tumor but MRI in 6 months will confirm that.
2. Hearing looks like it is preserved as can hear from the affected ear  but this Friday or in two weeks will be confirmed by the test.
3. Dr. Schwartz and Dr. Slattery are surprised too as they didn't penetrate the facial nerve and 2 hours post surgery my face was okay (2) on the scale from (0 being best to 6 worst). I was able to smile, close right eye, etc but in 4-5 hours post surgery the nerve went to 4 and it is weak now. I cannot smile from right side, twitch my nose, raise eye-rows, close right eye fully, it is dry so using drops. They are optimistic that this is temporary but only time will tell. So, worried as since Thursday night haven't seen any improvements on the facial nerve. Would appreciate your experiences on this.

Doctors' are awesome at House Ear Clinic. Internal Medicine Dr. Stephan is funny and very nice and spends time with you to make everything understand.

St. Vincent Medical Center and Seton Hall are awesome and convenient for the outsiders. We are still at Seton Hall as this is just across the street from House Ear Clinic and only steps away from St. Vincent medical center. They charge $65 a night for a room and provide only one room per patient.

I am walking and balance doesn't look like too much affected as the VBR or ABN test which determines my balance pre-surgery already showed that the nerve was 73% not functional but somehow over the period brain might have adapted to it. Can't tell for sure but might be the case and that is why not a lot balance/dizziness/drowsiness issues so far.

A few questions:

1. You didn't have any balance issues immediate post-surgery but later on develop and took sometime to get adapted to it?
2. How many of you had/saw/heard good facial nerve case but within hours it deteriorated and what was the recovery time on the facial nerve if any and any permanent/long-term damage?

Thanks and much appreciate your help!!

Amit