Need Help Deciding - Experiences please!

[leapyrtwins]

The incision for retrosigmoid (aka sub-occipital) is behind the ear.  My scar looks like a > 

This is a picture my sister took with her cell phone 2 days post op while I was still in the hospital.  My huge, white (and very tight) mastoid bandage had just been removed.



By the time I was released my hair was growing back in and the incision was hardly noticeable.

With this approach, because the docs don't go in through the ear, the patient doesn't automatically lose their hearing - like they typically do with the translab approach.

Jan

[CHD63]

Hmmmmm.  This is interesting.  I have had retrosigmoid approaches on both sides of my head and neither one looked like Jan's.  Wonder what makes the difference.  I guess neurosurgeon preference maybe.  Mine are behind each ear but in a slightly curved line about an inch and a half over from the ear, like a ) and ( looking at the back of my head.

Clarice

[leapyrtwins]

Clarice -

I've seen others with retrosig scars that are shaped different than mine.  As you say, it's probably neurosurgeon (or neurotologist) preference; I forget which one actually made my incision. 

I do recall that my neurotologist is the one who stitched me up because I teased him that my brother who's a taxidermist does a better sewing job 

I think the key to the retrosigmoid (sub-occipital) approach is that the docs go behind the ear; how they do it is probably somewhat irrelevant.

Jan

[Larry]

Hi there.

okie dokie, this is a little hobby horse of mine so I'll throw my 2 cents worth in.

I had surgery 10 years ago. i was lucky (relatively) in that I only had 6 weeks off work and no facial paralysis. I do have SSD (single sided deafness) and have had chronic headaches since surgery.
The tumor then grew back, i was in wait and watch for a few years but 18 months ago decided on radiation treatment which has halted the growth.

there are basically 3 types  of surgery - Trans lab, Middle Fossa and restrosigmoid. Trans lab - the most invasive and guarantees full hearing loss in that side but gets the best view of the tumor for the surgeon. The other two are less invasive and offer a potential to save some hearing loss but the surgeon's view of the tumor is not as good as Trans Lab.

With surgery, you won't get back to work for at least 6 weeks.

radiation treatment comes in a few modes. The two main ones are: Cyber Knife - treatment is spread over a period of time from 5 days to ...... whatever is recommended. Gamma Knife - a one off hit with the radiation. that is, a single treatment.

There are advantages and disadvantages of surgery or radiation. I guess, at the end of the day, it becomes an emotional decision. If you have a fear of one or the other then the decision is easy. If you have a financial consideration (time off work) then the decision is easy. If none of the above poses any concerns then go with your gut feel after talking to the surgeons and radiation oncologists. make sure your get second opinions on both

Laz

[justducky]

Thanks to all of you. The doctor said he would NOT try to preserve his hearing because his hearing in that ear is just wayyyyyyyyyyyyy gone anyway. Since he's retiried, the time off work would not have to be considered.

Thanks for showing us your scar leapyrtwins ...this is pretty much what they described but hubby says his woudl be a little different because of the different 'type' of surgery they are talking about. But they would be doing it behind the ear like yours...

We are both still reading up on this and all the info the doctor sent him with us. It makes me realize how serious this really is. Thanks to all...hope to decide in a day or so.

[Cheryl R]

I have a different shape for my mid fossa's then what House does for theres as have seen pic on here of someone who went there.        Just like what meds a dr gives post op and the incision, they all have their own protocol and way of doing it.
                                             Cheryl R

[Syl]

Justducky:

I had retrosig because I wanted to preserv my 60% word recognition. With radiation treatment, it takes months to know whether the tumor is dead or not. I needed to know ASAP that the tumor was out. And, because of my relatively young age, I was afraid of the long-term effects of radiation.

My scar is shaped different than Jan's. Mine is shaped like a backward question mark.

I do suffer from chronic headaches. I hardly ever got headaches before surgery. I don't know that having chosen a different treatment would have prevented the headaches. It's not as bad now. I get them less frequently & they are not as intense & rarely of the debilitating type.

I had slight facial weakness 17 days after surgery, but steroids took care of that.

Someone mentioned that translab is the most invasive of the 3 approaches. It does sacrifice your hearing, but with retrosig & middle fossa, the brain is pushed aside to provide a better view of the tumor. Not with translab. That messing with the brain can put the patient at risk of getting a stroke.

Even at 2.5 years post-op I continue to see improvements in how I feel. My balance has improved, the headaches are not as bad, & my wonky head isn't so bad anymore.

As for my hearing, it got worse with the surgery, but I deal with it & continue to adapt.

Syl

[justducky]

Thanks for your reply. His surgery is scheduled currently for Feb 9, but he's thinking about possibly cancelling and looking further into radiation alternatives...at least to find out more. We are wondering in the Chicago area who is the best doc for talking about this alternative. I think if he talks to someone who has done the GK or CK it may help him make a more informed decision.....we are still undecided.

[JAndrews]

It does depend on your husbands age on which procedure is the best for him. I went to the House Ear Inst. in LA with Dr. Brackmann. I had the translab approach. I spent 3 months researching and alot of money doing so. I AM FINE!! Yes I am deaf in the right ear, tinnitus can be overwhelming some days......I have no headaches. During surgery my facial nerve was monitored the entire time, the key to no long term facial paralysis:) My insurance refused to pay, my mom mortgaged her house and 6 months after surgery I took the insurance company to court and won:) It was a long road of depression/anxiety and physically healing from brain surgery. All thru this time of terror I had my son who was 2 1/2 yrs at the time and an 8 week old daughter. I was lucky enough to have my mom, sister and husband by my side. I am now 40 yrs old and 2 years post op and feel like myself again. It wasn't easy, but I always remind myself how much worse it could have been. Good luck to you, please don't make a quick decision..that AN has probably been sitting there a long time, take some time to reasearch his best option. Please feel free to email me and I will be happy to speak to you on the phone.
Julie

[justducky]

Thanks for responding. They are talking about doing the Translab surgery. His hearing is almost gone in that bad ear. I do think we need to hear more from a doc concerning the radiation, which will help him make up his mind or he will always wonder if something goes wrong if he should have found out more. I can't imagine why insurance would refuse to pay for this...I'm sorry to hear you went through that. jducky

[JAndrews]

My insurance was an HMO. All of the other opinions I had (including some docs that had extensive cpa tumor removal experience) pretty much told me my life would be worse after surgery and that radiation would make the tumor more difficult to remove in the future if the radiation didn't work.  My insurance would not pay out of network regardless of the best outcome for me and the rest of my life.So I had translab with Dr. Brackmann (he was my 4th opinion). I had opinion from NYU, University of Miami and Minnesota Mayo Clinic.
Everything Dr. Brackmann told me came true. Except the recovery was longer than he said it would be. He got all the tumor out, just like he said he would:) I have no long term side effects except SSD, a little off balance when Im tired, and tinnitus..just the symptoms he told me I would have.

[justducky]

Thanks to all of you who have replied to this post.

My husband has decided to move forward with the surgery on 2/9. It is the surgery (trans lab I believe) that will completely remove the tumor (hopefully) although his hearing he has left will be totally gone. But we have decided it is the best option for him.

So please keep him in your thoughts and prayers as it's a very scarey time for both of us. We feel confident in the doctor we have found as he has much experience in this surgery. I will keep you informed here of the outcome. Thanks so much for all of your advice and help.

[leapyrtwins]

ducky -

glad to hear your husband has made his decision - a very tough thing to do and oftentimes the hardest part of the AN Journey.

His neurotologist is top-notch (so is his neurosurgeon) and he'll be in great hands.

Wishing him the best.  Please keep us posted,

Jan

[justducky]

Thanks Jan..... we will definitely post back!

[leapyrtwins]

Forgot to ask, did your husband get vestibular exercises to do before and after surgery?  They really help with balance - saved me from having to go to physical therapy post op.

I have a copy of the exercises that Dr. Battista gave me.  If you need them, please PM me your email address and I'll forward you a copy.

Jan