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HI

Sorry to hear about how tough the waiting is - and the symptoms you are having. I was lucky enough to have my parents come stay with us. Agree 100% with ggc's response. It might be worth while seeing a vesitbular PT in advance, not just to have pre-surgery guidance but having that relationship already set up makes it easier AND you will know how far away s/he is.
 
My surgery was mid August, so thinking back...the biggest things to consider are:

1. Prescriptions (right after surgery)
2. Appointments (driving fits in here)
3. Keeping the house put together
4. Meals

Prescriptions: Right after the surgery you will get a zillion prescriptions, and will need to think about how to get them filled, work with the hospital to see if they can be filled at the hospital pharmacy (my husband & father (2 separate people) had to drive to 3 different pharmacies to pick up my prescriptions).

Appointments: My first appt was 2 weeks post surgery, with each surgeon. It was further past surgery with the PT. If you have Lyft or Uber nearby, this is the time to use them. I suggest sign up and use them for a few trial rides in advance so that you don t have to work through the process at the time.

Keeping the House Together: Your sister should be able to help with laundry and dishes for the 2 weeks she is there. When she leaves, depending on how your balance is, focus on simple tasks one at a time. Maybe do a deep clean in advance. I had someone come and walk the dog each day while i was recovering (even though my parents were there)

Meals: My co-workers set up a meal train for us, so we had too much food. If i was doing it again and didnt have them, i would prepare a number of meals in advance, even a menu, to remove a decision making process. The fewer decisions you have to make, the easier recovery it.

I wrote a blog (its a mess, the ordering is wrong, etc) but here is the section re: the first few weeks recovery, if it helps. Caveat that EVERYONE is different.  https://it-started-with-a-tumor.blog/2018/09/25/post-surgery-what-to-expect/

Lost of supportive thought your way!


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For those in the 'watch and wait' status / Re: metallic taste
« Last post by Patti on Today at 06:32:52 am »
I don't have any taste or sensation in half of my mouth and throat and face and eyes. There are many cranial nerves that can be affected,
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Chris, I agree. If possible,your husband should try to reschedule his surgery. You never know how you'll react. I hate to post anymore because I don't like to scare people. And it is 20 years later, so I am sure techniques have improved, BUT you just don't know. My story is very disheartening to anyone facing surgery, but I was hospitalized for 2 weeks and the sent to a rehab center for 5 weeks, and then outpatient rehab for 4 months, of which I was not able to drive so my loving community took me there and back 3 times a week (45 minutes one way). Just saying.......
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Hi,
Thank you for replying to my post re: metallic taste. The best part of these forums is knowing you're not alone (or losing your mind  - some of our symptoms can be pretty out there).

Is there any way your husband can postpone his surgery? You have probably already gathered that there is a wide range of recovery stories and no two people respond in the same way. If you could get more information about how much your balance is likely to be impaired that would be helpful. Sometimes with larger tumors the recovery is actually much better than with smaller ones because your brain has already accommodated to having no input from the tumor side (rather than intermittent or faulty input, as can be the case with small tumors). The surgeon could refer you to a vestibular PT who might be able to give you guidance as to what to expect.  I know some people even do vestib therapy before their surgery to facilitate post-op (not many, but might help).

I will send you healing thoughts and prayers a! Keep us posted on the forum as there are many more who read and send good wishes than post replies!
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For those in the 'watch and wait' status / Re: metallic taste
« Last post by musicmaker on April 20, 2019, 06:43:23 pm »
I also have the metallic taste and some of the same symptoms that you have. I was diagnosed a few months ago. My metallic taste has gotten better or maybe I'm getting use to it. The only thing that taste the same is chocolate. 
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Hi, A couple weeks ago, had an MRI that showed a 3.1 cm tumor on my left side "with mass effect on the brain stem".  It was beyond by tolerance to wait for appointments, insurance verification etc. but I feel more calm and confident having met the two surgeons that will take care of me.  Unfortunately, my husband has a complete rotator cuff tear and his surgery is schedule for May 2nd, I don't have a date but based on discussions, is likely to be 2-3 weeks later.  I don't want to wait, as I sometimes can't lay down/sleep properly as it feels like there is more pressure behind my eye and in my ear, and headaches are more frequent and severe when I lay down.  I'm pretty much exhausted. 

So, I've had to Dr Google my husband's likely recovery path and treatments post laparoscopic surgery, because I missed his appointments while meeting with the surgeons and having hearing tests. Looks like 6 weeks no driving/lifting/doing much without a brace on the affected side. Also he's old school macho in the extreme and is in denial about the impact of surgery (he's never had one before), doesn't think we need to plan for both of us not being able to drive.  My family is all in England, I live in Oklahoma.  My sister is ready to come stay with me for a couple weeks after my surgery, she is not a driver though.  So I'll have company, and someone to be around while I deal with balance issues, but can't stay beyond 2 weeks, and can't take anyone to their appointments.

Has anyone else had to seek support for getting around and coping with no extended family nearby?  Is there anything in particular we should be aware of and try to plan for?  It seems like most hospitals say they have coordinators to help with this stuff, but the person for that shows up post-surgery and drops a leaflet on your bed. 

I don't know if I'm being overly anxious, or if I'm going to find myself in a pickle that I could've avoided if only I'd known more beforehand....
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For those in the 'watch and wait' status / Re: metallic taste
« Last post by chrisabbott on April 20, 2019, 09:14:43 am »
Hello, I got my diagnosis a couple weeks ago, but have been experiencing strange tastes for over a year.  It was my first symptom (I already had impaired hearing so I didn't notice how bad my left side had got until after my tumor was found).  I also have numbness on the side of my face and tongue, and dry eyes & mouth which I believe are all related.

I could live with the taste thing not going away, but I'd like to not keep tasting extremely sweet, sometimes sour &/or metallic tastes if it can be fixed.  This is one of the reasons I joined and started looking around here.
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Facial Issues / Re: Botox Treatments
« Last post by Rhcdad on April 20, 2019, 05:31:20 am »
Good to hear! Constant hills for us on the other side to climb. It can get you at times. I'm headed to the gym, something I found super beneficial.
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AN Issues / Re: Another new guy...
« Last post by dwilliams35 on April 19, 2019, 07:40:34 pm »
A year and a half post-GK now....  apparently I was wrong about one more 6 month MRI,  they’re going to wait a year....   meanwhile, balance problems are pretty much gone.  Hearing is pretty much stable, about the only really objectionable thing is tinnitus.  At least it’s now down to just a high hiss, and Herb Alpert seems to have put his horn up for good..
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Microsurgical Options / Re: Tarsorrhaphy questions for those who have had it.
« Last post by JackJack on April 19, 2019, 04:23:59 pm »
Hi Jack,
My husband had a tarsorrhaphy done after his AN surgery which affected his right eye's  blink.  The procedure helped as his lower lid had drooped significantly due to nerve damage.  After the procedure,  the appearance of the right eye was a bit different than the left, but over time it relaxed and matched the non-affected one. Definitely did not look freakish.  The final result helped to manage the constant irritation caused by incomplete blinking.
No experience with reversing the procedure.
I love looking at people and notice many faces with slight asymmetrical features.  it adds character and  makes us unique.
It sounds like you have consulted with a number of doctors.  My recommendation is to use  a highly experienced occuplastic surgeon. 
Hope this information is useful,
Miranda


Many thanks Mandy! That was the kind of encouraging commetn I was hoping for. xx
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