Newly Diagnosed & Worried About PostOp Care

[chrisabbott]

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....

[ggc]

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!

[Patti]

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.......

[jami]

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!

[chrisabbott]

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.

[chrisabbott]

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. 

[jami]

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!

[chrisabbott]

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.

[g_persefoni]

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

[chrisabbott]

Thank you - I find it very hard to wait.  I know that in the weeks I was waiting for my neurologist appointment, I lost the last of my hearing in my left ear.  What's next?  I am actually more comfortable now that I was for a few weeks recently where I couldn't lay down without getting pressure and pain.  I still have numbness, dry eyes and mouth, but can sleep better as I can lay down.  The surgeons gave me June 13th - Hubby has had his surgery and has 3 weeks in his brace and has started physical therapy.  He didn't understand being ill or needing support - he was horrible for help when I had shoulder surgery 3 years ago, and I think he "gets it" now, but is depressed since a heart attack a couple years ago so I'm not holding out hope that he will be as supporting and adorable as he was prior to the heart event.  My sister is flying in from England and will be with me for 2 weeks - I may not be fully recuperated by then, but I should be able to ask for help when needed (I hope!)

It seems to me, that surgeons advise a relatively short recovery, then most patients report a longer one - I wonder if the occupation and life demands are a major factor in this?

I feel pretty good about my surgeons - glad to have local, and one did his fellowship at House, the other has a bunch of surgeries and research papers on non-malignant tumors.  I can't find much online about my Oklahoma facility, yet for cancerous brain tumors there are lots of success stories including from patients that flew in from other states and countries for treatment here.  Bummed that its so hard to find info for non-malignant tumor care (other than here of course).  Getting ready to tell several hospitals it would be nice if I didn't get surveys assuming I have cancer after I approached them for information.....

I hope you are doing well now?

[jami]

Hi chrisabbott -- have you had the surgery yet? If so, how are you doing?

Jami

[chrisabbott]

Hi and thanks for checking in with me.

My surgery is scheduled for June 13th.  I have a pre-op lab and MRI Thursday, and an appointment with my neurologist this Wednesday - she made my diagnosis and referral to the neurosurgeons.  I'm guessing I can speak with her about managing facial numbness etc. as I'm assuming she would be good for helping with post op care.  I'm hoping she can help ally my concerns or tell me how to find out about the possibility of mosaic NF2?  I found out I have a nevus on my eye same side as the AN, and I didn't realize until I did a little extra poking around, that not all NF2 is bilateral tumors or inherited.  Some of my symptoms have worsened (bearable, but still changed) so I'm glad I took the earliest date available for the surgery.

I haven't been able to do quite as much as I'd like to prepare (yet) but I have a few dinners put tip in the freezer, and have a new, adjustable bed being delivered tomorrow.  I find laying flat can aggravate my head and our bed was pretty old!  So I think that was a good investment.  And, while he is still very limited, my husband's shoulder surgery went well so I don't believe he will be able to look after me if I need help, but he won't need someone to look after him.

Do folks post their experiences with actual treatment in a new thread?  I hope to have good stuff to report and would be happy to share either way.

[jami]

So glad your husband is doing well - and that you kept the early date. Its tough to explain to those who dont have them, but the symptoms can be all encompassing.

Good to connect with the neurologist - the toughest part of this all is sorting through the symptoms and knowing which to worry about (and which not).

I am 10 months post surgery (although did have to follow up with CyberKnife) and still have to remind myself to 'lean in' to my life and not let the symptoms hold me back.

I am sure it will go so well!!!

[chrisabbott]

I don't think many would understand why I say I'm not rolling around in agony, and yet I find the symptoms disturbing/uncomfortable, and they make it very difficult to concentrate on work or chores.

I hope they knix the last bit of your tumor good and final.