Help a newbie plan

[kgs123]

New to this whole thing but facing lifechanging decisions and would appreciate input from those who have done this before me. I'll admit I have looked at a lot of information here but haven't yet watched the vidoes.

I am newly diagnosed with an 18x13x9mm AN that is already pushing on my brain stem and actively growing. Vestibular testing shows not much affected yet, but hearing is already reduced. Functional (my number is 40) but reduced.

I'm 44 years old and single parent a 3.5 year old. My options are translab where I'd lose hearing or RSM and Dr puts it at 25% possibility of retaining hearing.

Of course, surgeons like to cut. He said radiology is out but I also want to speak to a neuroradiologist.

I would love input on:
1. how on Earth I am supposed to determine if 25% possibility of retaining hearing is worth the additional risk of drilling through my skull
2. how do I need to line up my help for post surgery? All day for weeks? Only when my 3yo is around?

Thanks for the help.

[ANSydney]

Welcome Karen. At 1.8x1.3x0.9 cm, all three options are open to you (open surgery, radiosurgery and observation)

Your hearing loss is the same as mine (40 dB). That is still considered serviceable hearing. The best option for retaining hearing as long as possible is observation.

Mine is also pushing on, and displacing, the brainstem. At your size, it should not be a problem.

How do you know your tumor is actively growing? You'll need at least two MRIs, spaced ~6 months apart, to tell if it is still growing. The tumors tend to grow rapidly at first, then about 1 mm/year and slowing down to nothing about 4 years from diagnosis. There are plenty of entries in this forum that link to papers that discuss this. Search for "Stangerup".

[Enri]

Sorry to read that you are now part of the club, but welcome. 

Every situation is different which makes it hard to predict outcomes.  All I can do is to share with you some of my story.  My tumor was about 1.6cmx 0.8 cm and was not pushing on the brainstem.  Approaching age 60, I decided I wanted it out now rather than later.  My initial thought was translab and be done. But as I saw the neuro-otologist and found that I still had serviceable hearing I become more enamored with the idea of trying to preserve hearing.  Somehow, I got comfortable with the idea of going retrosigmoid.  I had my surgery Nov 2, 2016.  I was lucky that after surgery I was pretty much as before surgery.  No headaches, no dizziness or balance problems, same hearing loss and tinnitus as I had before the surgery.  I did have a complication (CSF leak and touch of meningitis) that send me back to the hospital for an additional 9 days about a week after I was first released.   But once that was taken care of results were the same.  I am happy with my decision.  But as I said, different people make different decisions.

It is hard to figure out what support you will need after surgery as in a way it would depend on what symptoms you have after surgery.  If you have dizziness or vertigo, for example, you may need more help than if you do not.  I was lucky to have a friend come and stay with me for about 4 weeks.  So she took me through my two hospital visits and was then with me for about another week after I was released the second time.  With no headaches and no dizziness, I think I would have been OK by myself after 5 or so days (with support from my neighbors for grocery shopping and stuff like that), once I was comfortable that I was not going to fall.  But I tell you it was nice to have the help and the company.  Nice to have someone put food in front of you or handle laundry and you do not have to worry about it while you nap as much as you need. 

The first couple of weeks out of the hospital I would get tired easily and needed to lay down or nap.  Go to the supermarket, nap, go to the mall, nap.  Even so, I was not dizzy, I think I was spending more brain cycles in just walking. 

One of the rules was that the doctor didn't want me lifting anything heavier than a 2 liter bottle of soda.  So it was nice to have help to carry groceries or laundry etc.  So I can imagine that having a 3 year old may present interest problems in that area.  I do hope that some of the mothers chime in.

I must confess that I am kid challenged in the best case, but my niece and her 4 year old son visited me in early december and I got tired just watching him run  around the house. 

I wrote a long note back in November with some of what I did to prepare for surgery being a single woman. 

There is a lot of info in the forum.

Good luck to you.

[KarlZ]

Hi Karen,

Your questions are very familiar to me when I first came upon this forum right after diagnosis three and a half years ago at age 49. At that time I had an 8 mm AN, diagnosed after a lot of hearing issues on my right side led me to an audiologist. This forum was invaluable to me then as it continues to be today, two years after my translab surgery.

It was my good fortune that the tumor was discovered so early, giving me plenty of window for the observation phase of these things. After 3 MRIs, spaced 6 months apart, mine had grown to 11 millimeters and the shape was bringing it very close to my brain stem. At that point, I still fell into safe watch and wait territory, but I was growing uncomfortable letting it continue to grow. I consulted both a neurosurgeon and a GK surgeon.  At that point, I had minimally serviceable hearing on the right side, with most low frequency sensitivity gone.  I could have waited longer, and the tumor might have stopped growing, but I also feared greater surgery complexity and greater risk of complications if I let the tumor continue to grow.

As you are, no doubt, seeing here, there are a very diverse set of experiences pre-op and post-op. I don't disparage anyone's treatment decisions - it can be agonizing to make a decision - and I am only grateful for all the different opinions and stories that are here.  Because I had little hearing to salvage, and because of the orientation of my tumor, I found myself less comfortable, for various personal and perhaps emotional  reasons, with GK and other surgical approach options, and I chose the translab option to put all emphasis on preserving my facial nerve (which was fully spared any harm).

I also was fortunate to have good medical insurance that allowed me to look for surgeons across the country. So I used this forum to find centers of excellence where AN surgery is successfully performed frequently.  I think this was key to my surgery going exactly as planned, with no post-op complications.

Because my tumor had not yet impaired my vestibular nerve on the right side, I went through all of the very unpleasant experience of post-op vertigo while my brain retrained itself, along with vestibular physical therapy.  I felt like I literally lived inside a spinning cement mixer for 2 weeks! As unpleasant as it was retraining my sense of balance and orientation, that was the only thing I had to deal with. I have much gratitude about that as well.

Even with so much going so well for me, I was heavily dependent on my wife to get around for the first 2 weeks. Strict lifting limits, and no driving both for 4 weeks, and needing to hold on to my wife to move from one room to another  With no local family, I don't know what I would have done if I were a single parent.  Some insurance plans have coverage for visiting, in-home support.

All my best hopes and prayers for your treatment and outcomes. Whichever treatment you ultimately select, find physicians who practice it frequently.

Karl

[kgs123]

Thanks, Karl.

I've gotten some more info from neuro. My tumor is already pushing against the brain stem and trigeminal nerve. My weak wave forms make me an unlikely candidate to retain hearing. They are suggesting translab. Since that testing I've actually started to feel shooting pain in my jaw. I have an appt with my dentist to assure it's not tooth related. I think I know it isn't, but it'll help me process things better. I also have an email into the doc regarding what to do with that pain until surgery. Not sure I want to go on a nerve block for a few episodes a day, but those episodes are definitely debilitating.

Like you, my balance has been retained thus far, passing the tests with ease. Unfortunately that means a rockier post op, probably like yours, so I appreciate hearing it was about 2 weeks of difficulty. That makes me more inclined to let my kid have "sleepovers" at granny's house for the week I'm hospitalized as well as the first week I'm back home.

I'm also growing nervous about facial paralysis. If I'm already having episodes, then removal may really hit that nerve.

Luckily, the only lucky thing in all of this so far, is that I live where Duke is an in network provider. Given how Teddy Kennedy flew down here for brain surgery (albeit a different kind), I hope that bodes well for their reputation and skill as a department.

I've already sent my info to House for a second opinion and I'm cleaning out the spare bedroom for someone to stay there. Now I need to work on a date and setting up help. I am SO appreciative for the assistance on here, even as individualized an experience we each have.

[JLR]

I know what the pain of TN is. It is the worse.  My AN was leaning on the nerve causing pain.  There is no over the counter drugs that will help. I tried them all 2 doctors wanted me to go on Tegretol which is actually a anti convulsants medication. It works by decreasing nerve impulses and it's highly recommended for those suffering TN. I heard a million horrible story's re this drug. My pain was so bad that I finally agreed to take.  For several months it worked but I still needed the surgery to remove from the nerve. It was successful.  the tumor was debulked.  The pain gone. BUT after a few days after surgery I developed right sided paralysis.  That was 10 months ago. I'm still dealing with that as well as a problematic eye and zero hearing on that surgical side. I had premier surgeons. I think the AN surgery is a risk.  My surgeons told me they tested my facial nerve during surgery and it was fine but a few days later it occurred. I hope your pain is resolved very soon.  All the best, Joan