what are your tips for pre and post op? what's the word on BAHA?

[Pol]

Hello out there

I've read quite a few of your posts and seems like a great support community.

I am having surgery on 5/23 at Beaumont Hospital in Royal Oak, MI. After doctor shopping, we liked them the best.

My history is unique in that I've had 2 gamma knife treatments- 12/99 and 9/06. The doctor who did those treatments says this can enlarge up to 2 years after GK but is NOT growth. He is not recommending surgery and is the lone voice out there that says that. All the others are surgeons, so their bias is towards surgery.

The problem is, nobody can tell growth from swelling. This thing has continued to 'enlarge' since the 2nd treatment nearly 2 years ago (9/06) and is compressing my brainstem. I am going with the surgery as I am afraid if this continues to enlarge that will make the surgery harder (or so the surgeons say) and I run the risk of added complications from surgery.

The surgical plan is to do the sub occipital approach and debulk the tumor--that is get as much as possible without damaging the facial nerve. That of course is risky as the tumor could grow again.

Is there anyone out there who has had GK and then had surgery? If so, what was your experience?

What are your tips for pre op and post op? What would have helped you be more comfortable? What is the worst thing?

Who out there has experience with BAHA? Should I get it implanted the day of surgery or wait a few months?

Any tips would be most appreciated. I'm feeling pretty confident about this and envisioning the best outcome.

Thanks! 

[leapyrtwins]

Hi, Pol -

I can't answer your question about GK and then surgery because I've only had AN surgery.  My surgery was on 5/31/07. 

I had BAHA surgery on 3/4/08 and will be getting my processor in a few weeks.

Whether you do the AN surgery along with the BAHA surgery is usually up to your doctor.  Some have preferences, some don't.  In my case my AN surgery was retrosigmoid so my docs and I were hoping I would have no need for a BAHA.  But the surgery left me SSD and I decided the BAHA was my best option.

The BAHA surgery isn't as huge as the AN surgery - it's outpatient and you have the option of local anesthesia.  They don't actually open up your head for the BAHA surgery - they just lift up a small portion of your skin and drill a hole in your head for the fixture.  Don't worry, it's not nearly as bad as it sounds 

I do know other AN patients who had the two surgeries at the same time.  I'd recommend asking your doctor.

Jan

[er]

Hello Pol,
Good luck on your surgery on 5/23. Let us know your outcome of the surgery.
I noticed that their is a few that didn't have hearing lose. I even talked to a lady last week that she had very little hearing loss.
You might be one of those persons. I am no expert, but find out your out come first.....
eve

[leapyrtwins]

Pol -

you didn't mention which surgical approach you were having.  Translab, retrosigmoid or mid fossa.

As you probably realize Translab will leave you SSD without a doubt.  Retrosigmoid and mid fossa give the docs a chance of saving the hearing in your AN ear, but nothing is guaranteed.

Jan

[sgerrard]

Jan - Pol did mention having the sub occipital approach, which I think is more or less the same as retrosigmoid.

Pol - Swelling can continue for 2 years after radiation treatment. JB recently posted a chart from a research report, showing some cases of swelling 30% in length, or almost double in volume, before going back down. All the cases in the study did shrink back down, but for a few, it was out at 3-5 years later.

If the AN is large enough, and is exerting pressure on the brainstem, then de-bulk surgery may be a good idea even if it is just swelling. They should be able to be very conservative, and leave all the nerves completely alone. After all, it has already been radiated. Although it is usually done as surgery and then radiation, doing both seems to work well on larger ANs.

Best wishes for next week.

Steve

[leapyrtwins]

Jan - Pol did mention having the sub occipital approach, which I think is more or less the same as retrosigmoid.

Steve -

thanks for pointing that out to me.  I read Pol's message twice and somehow missed that - twice 

Guess I'm just overtired tonight - or this morning; Chicago time.

Long week 

Jan

[Boppie]

Overall I'd say the most surprising thing were the stinging eye and numb tongue that I had for a few weeks post op.
Originally, I thought the surgery itself would have been "my ordeal". I cannot complain as I know others have complications that require greater patience.  I try to be be well educated when I go into a new situation, and the eye and tongue problems were far from my control.  But we can't rush nerve healing.  It just happens.

[Pol]

Hi
Thanks to all for your responses. I will keep you posted once I am home and able to type at least a few words. Yes, the plan is to debulk the tumor. I too have seen the info about swelling 2 years post GK but the threat of brain stem compression is too much for me.

I think I will ask the doc to wait to implant the BAHA. I just read about the transear hearing aid which works by bone conduction also.

If anyone has experience with the transear, I'd love to hear about that.

thanks again! Pol

[leapyrtwins]

Pol -

there are lots of posts here about TransEar.  Just put "TransEar" into the search box under your user information at the top left side of the page and you'll find them.

Good luck with your surgery,

Jan

[sgerrard]

Pol,

Best wishes on your surgery, and a quiet, gentle recovery. Hope to hear from you in a week or so.

Steve