Mid fossa next week

[lizzie1hoops]

Hi all,

I've been reading the discussion boards for several years and have gained so much valuable insight and felt less alone in this crazy process.  I'm finally having surgery (mid fossa approach) next Thursday so I thought I'd reach out for some much-needed advice.

I'd love to hear from some post-op folks what you wish you'd known ahead of time.  For example, is there anything special I should plan to bring to the hospital?  Anything that would be good to have at home?

Best wishes for a happy and healthy New Year to you all,
Liz

[mindyandy]

Hello Liz  Where are you having your surgery? I cannot give you any advice. Others will chime in here. Good luck for your upcoming surgery and quick recovery. Keep us posted

[CHD63]

Hi Liz and welcome to the forum .....

Glad you have "taken the plunge" and begun posting.  I lurked for months before I got up enough nerve to post.  I had never been in a chat room or on a forum in my life until my AN hit and I found this wonderful site!

If you have been reading some threads/posts, you probably have picked up on the fact that many of us found lip balm essential for the post-op period in the hospital.  Good to have at home are quick meals frozen and ready to reheat/cook at a moment's notice.

Many thoughts and prayers for an uneventful surgery next week.

Clarice

[jaylogs]

Hey Liz!! Good luck from one middle fossa alum to soon to be another!   The best advice is to remember that the first three days don't count after your surgery.  That's so true, because almost hour by hour you'll feel differently.  Also remember to just take it easy after you get home.  Also remember that if they give you steroids (that's for the swelling in the head), that will also affect how you sleep greatly...as in you won't get much. As with all meds, different ones do to different things to each person.  Take care and good luck, let us know how it goes!
Jay

[lizzie1hoops]

Thank you all for your messages and your helpful tips (lip balm, easy meals, three days, meds - check)!  It is so comforting knowing other people have been here before and made it through.

I'm having my surgery at Swedish Neuroscience Institute with Dr. Backous & Dr. Foltz.  All the staff has been wonderful and, although it's not a strictly scientific approach, I just knew it was the right place for me (I've had 4 physicians review my case so far).

Thanks again and best wishes to you all!

[mindyandy]

I remember Dr. Backous when he was at Virgina Mason. I only met him once shortly after I found out about my AN. Nice man. I had my CK done at the Swedish Medical Cyberknife Center. Sandra Vermulen. I now live in North Dakota so I had sent my scans to Dr. Friedman in LA. Just waiting to here his opinons.

[lizzie1hoops]

I hope you hear from Dr. Friedman soon, I know how tough it is waiting on opinions that affect your life so profoundly! I know there are a lot of people on this forum who think very highly of him.

[JAndrews]

Here's a few tips that helped me out. I felt dizzy when I would shower. I got a hand held shower head and a small shower seat, I used it for about 6 weeks. My dizziness was never overwhelming it just felt more off in the shower. Lip balm,candy bars. For some reason the steroids made me not taste food..but I could always taste chocolate. Sneakers..walk as much as you can..it definitely helps. Big comfy shirts. Don't let a headache get out of control after surgery. Take the pain med routinely atleast the first 3 days. The pain meds can be constipating...drink alot of water. Lubricating eye drops, just in case. After surgery my eye was dry for about 3 months. Good luck to you:) Best wishes being sent you way

[lizzie1hoops]

Thank you so much.  This is great advice and the wishes don't hurt either! I'm making quite the list. 

I bet this is the place to ask a question that's been on my mind...  My bedroom is up a tight spiral staircase.  Do you all think I should plan to sleep on the main level for a while? (sending my Mom who's in town to care for me after surgery up there instead).  I tried searching for "stairs" and "staircase" and didn't come up with any results.

Thanks a million,
Liz

[CHD63]

Hi Liz .....

Although each of us is unique on specific things that trigger the disorientation feeling, I have found that firmly fixing my gaze on stable (not moving) objects when I am walking usually solves the problem.  That being said, if your spiral staircase does not have a railing from top to bottom, I would not try to negotiate it until you are very stable.  If it has a railing, just be sure to hang on and fix your gaze on something solid as you are going up or down ..... and take it very slowly at first.

Weird as it may be, my two most recent falls were both after washing my hair and trying to wrap a towel around my head and got caught in watching the swinging towel.  You just need to be aware of certain situations.

After my first surgery, I was very careful to make sure something was within arm's reach when walking in my house.

However, you may not have a great deal of difficulty if your brain has already begun compensating by using your good vestibular nerve.  As Jan said, walking as much as you can in the initial post-op days is excellent therapy to train your brain.

Thoughts and prayers.

Clarice

[lizzie1hoops]

Thank you, Clarice.  This is really helpful. 

I'm wondering, is the falling kind of like a "down I go" feeling?  Like you lose your bearings and fall down?  Does it come with nausea?  I'll confess I'm most worried about the nausea.

I'm sure we all have an AN-related wish list, but I wish there were a better way to predict how severe the balance problems will be post-op.  I bet that a list of wishes would be a good thread, that should inform research on the subject!

[Chances3]

Hi Liz,

I had a middle fossa approach 14 months ago.  There isn't much you can prepare for, but here is what you might expect post recovery.  The first few days can be very challenging as your brain tries to calibrate itself.  Don't worry, the really hard stuff lasts a few days, after that it takes a lot of time for healing.  Unfortunately, there is no bench mark to go by, like if a person breaks a leg, the medical community can give pretty good estimates of recovery.  Surgeries concerning the nerves are very delicate and each person has there own specific recovery.  I was very discouraged in the beginning, I expected to be up and about in a few months, my recovery took a real long time.  The second symptom you might have, which seems to affect many middle fossa surgeries is fatigue.  You will tire quickly, I always say to other AN patients, listen to your body, and take a nap if you need one. 

I hope my comments help, and I wish you the very best recovery, please keep your AN friends up to date on how things are going.

God Bless !

[lizzie1hoops]

Thank you for sharing your insight.  I have initially planned to have up to 6 weeks off work, but I have heard several estimates that go up to 3 or 4 months or possibly more, depending on circumstances.  Sorry to hear your recovery was on the longer side.

I don't know if your situation was similar, but I guess many of the middle fossa candidates are in a situation where they have to decide when to have surgery (small tumors, symptoms not necessarily severe).  I am dreading regretting this decision if, like you, the recovery is very difficult and extended.  I guess there's only one way to find out!  I'll definitely keep updating as things go on, or have my husband do so.

Regards,
Liz

[lrobie]

Hi Liz,

I'm curious how big your AN is.  The mid-fossa approach was the surgery recommended for me.  I haven't made my decision yet.  Good luck to you.  I will be watching for your posts as I like to read from people who are having the same type of surgery that I may have some day.

Lisa

[CHD63]

Liz .....

I had virtually no nausea with either AN surgeries ..... first one retrosigmoid, second one translab.  The falling was more like, "Oh, oh, I'm falling, which way is up?"

I don't think the surgical approach makes any difference on the fatigue ..... that seems to be a universal post-op symptom.  You just need to have the ability to rest for a few minutes when the fatigue hits ..... it is the brain's response to the trauma and the adjustment to the lack of one vestibular nerve.

Depending upon the type of work you do, six weeks may be plenty of time if you have an uncomplicated surgery.  I was retired from teaching before my first surgery, but if I had still been working, I honestly feel I could have gone back in six weeks with no difficulty other than knowing my limitations with hearing and movement.  I'm sure I would have been very tired by the end of the day.  You just need to have Plans A, B, and C arranged in case needed, that's all.

For me, I was determined not to let this AN thing direct my life and I was very motivated to do everything possible to keep ahead of it and not the other way around.

Best wishes!

Clarice