Author Topic: Newly Diagnosed & Worried About PostOp Care  (Read 130 times)

chrisabbott

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Newly Diagnosed & Worried About PostOp Care
« on: April 20, 2019, 09:31:21 am »
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....
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Waiting for date to get this thing out!

ggc

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #1 on: April 20, 2019, 09:25:51 pm »
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!
Gina

Patti

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #2 on: April 21, 2019, 06:30:20 am »
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.......
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

jami

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #3 on: April 21, 2019, 06:49:02 am »
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!


Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @ UNC Chapel Hill
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
Cyber Knife being planned

Removal of rt auditory and balance nerves

chrisabbott

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #4 on: April 21, 2019, 11:46:19 am »
Thank you for your thoughtful responses.  Unfortunately, my husband is almost unable to do anything until he gets his surgery - he can drive a little, but it's uncomfortable and getting worse.  I would have considered delaying my surgery, but I'm nervous about risking more damage as the tumor is already large. 

We have an adult son, he can pick up prescriptions and drive us to some appointments, but I think it will be too much for him to try to do all of it (especially if both of us need rides to appointments!). He is very ADHD so this is going to challenge him, but he is also very caring and responsible - he wouldn't let us go hungry, but he can barely put his own laundry away.  Poor guy, both his parents are broken.  My coworkers can pick up the slack at work for me, but they can't help in any other ways since I'm a remote employee -  we all live in different states.  I haven't met my boss in 2 years! 

I have an appointment for balance tests next week, maybe I should ask about therapy and if I can meet someone pre-op then?  I like that idea - I have had two surgeries in the past that required extensive physiotherapy, and it really helps to have a PT you trust. 

I was thinking of stocking up the freezer with meals I like - you've confirmed that this would be a good idea.  Currently, I'm getting paperwork/legal & financial houses in order.  I plan to give my Son the password to my encrypted vault of passwords, just in case I'm too stupid to deal with that kind of stuff post-op.  I'm also decluttering and spring-cleaning the house to remove any tripping hazards and so I wouldn't be embarrassed to have guests stay.  We don't have any pets, and since we live on 5 acres zoned agricultural, there's no code violations if the grass gets too long + I think some of Son's friends may be up for helping us keep the grass down.

I hadn't thought about prescriptions, but they can be such a pain!  I'll call ahead to make sure they have what we need before setting out - we use Walgreens as its a network pharmacy for Tricare (secondary to my employer's plan - but a huge help with costs).

I will be dropping in here with updates and to see if there's anything I may offer here.  I already gained a lot of valuable insights from here, and value your support and suggestions.
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Waiting for date to get this thing out!

chrisabbott

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #5 on: April 21, 2019, 05:18:51 pm »
I read your blog - a nicely balanced description of what has been happening to you, and refreshingly free of acronyms that make me feel like an outsider.

My sister actually enjoys using all my appliances - she lives in a very sweet but tiny inner city house in England, so the dishwasher is a novelty  ;)  She has promised to bring my favourite cheeses and pickled walnuts with her so I have even more than sister-company to look forward to.  Food is a really big part of recovery and overall feeling good for me - I have a few friends on notice that I will text them if I run out of chocolate while still in hospital!   

I do know I don't react badly to anesthesia, (had a couple major surgeries including an 8 hour one to remove Giant Cell tumors/rebuild my hip when I was 23) but I have no earthly idea what it must be like to have a hole drilled in my head and then deal with seemingly unpredictable post-op recovery.  I am ready for a bit of a rough time, my tumor is 3.1 cm and apparently in a "tricky place" (isn't your whole head a tricky place?). When my neurologist told me its not cancer, but its not in a good place, I told her my big toe would be a good place for a tumor.  I have checked out that I have great short term disability pay with my employer, and I have a hospital indemnity plan that I think will alleviate concerns about paying for extra stuff like Uber.  I've never used a service like that before but I think I'll have them give us both a ride, say to Hubby's PT appointment, and if I'm comfortable with the driver, I'll lay out his schedule and book it all.  That would get it taken care of before I go in to be fixed, and mean we can reserve asking Son for his driving services for unplanned appointments, shopping, and picking up prescriptions. 

VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Waiting for date to get this thing out!

jami

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #6 on: April 22, 2019, 07:25:35 am »
Glad it helped - i cant tell you how many hours i researched/googled to learn more about what to expect. So many unknowns.

Get a chair for your shower, during recovery it helps, and if you have balance issues it makes things easier to wash your hair without falling.
I also set all my e-bills to paper delivery and updated my living will, just in case.

Hope all goes well for your husbands surgery!
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @ UNC Chapel Hill
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
Cyber Knife being planned

Removal of rt auditory and balance nerves

chrisabbott

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #7 on: April 22, 2019, 07:55:57 am »
Ah good one - I have a bench in my shower but will want to remember to put a cloth on it (I don't normally sit on it - its cold tile!)  I'm very curious about this balance thing as the closest I recall to having any balance issues, was maybe in the middle of the night I was less sure of myself getting up, and had to shuffle with my hands out, whereas normally I would confidently walk across a dark room.  That was only a few times, and it was roughly two years ago.  I'm guessing my tests next Monday may help determine if I've been compensating.

Hubby and I go to sign papers with a lawyer next week - we've been putting that kind of stuff off and that's just plain silly.  What if we didn't look both ways before crossing the street and get hit by a truck??  I feel I'm more likely to die from a stupid moment than the surgery, but no excuse for not taking care of business.

I'm going to clean up my password vault that also has all the websites for bill paying/bank accounts - its encrypted and I'm the only one with the password.  I'm going to trust my data security savvy son with that password.
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Waiting for date to get this thing out!

g_persefoni

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Re: Newly Diagnosed & Worried About PostOp Care
« Reply #8 on: April 23, 2019, 08:17:55 am »

Hi! I would recommend to postpone yours. The reason to say that is because when i found out that i had a tumor, until i completed all my research and all the tests i did my open surgery after 7 months. Within such a small timeframe i assume not much can change on your condition, at least at my case - i had mine for 15 years until i discovered it - these extra months just reassured my choice of hospitals and got me exposed to all the  potential post issues. After surgery I had 2 weeks of physio to help me walk again because after losing one hearing nerve your balance is unstable and terrible. So, yes, you definitely need someone around you physically. For the rest, we are here for you!
All the Best
3.5cm on the left side. Open surgery on September 2008 at the https://www.ini-hannover.de/en/

 


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