OK GUYS, NEED YOUR HELP HERE

[tony]

I have been asked to write a paper on "best practice"
for Brain Tumour OP survivors for our Health Service
- the 3-6-9 month follow up post surgery
Its vitually non-existant in the Uk at the moment
I wanted to ask all of you to write in with :
What worked for you ?
What should they have done ?
What was missed ?
If this works it should help 000`s for years to come
Thanks for your time
Best Regards
Tony

[Brendalu]

Tony,
So much was missed with mine, like not being told a second tumor existed and the doctors decided I didn't need to know about it at the time.  I still wonder when they were going to tell me!  I would have appreciated more scenarios of the effects of the surgery.  I would have appreciated not hearing, "All of my other patients haven't had this problem or that problem."  "You are going to lose your hearing as you age, so you can just get used to it early"  None of my relatives lost their hearing with old age and some of them were quite old when they passed (89, 93, 97, 86, etc) 
I would have appreciated more resources for post surgery that I didn't have to spend months to find.  I also think that better training of nurses in caring for brain surgery patients (the ones I had, had never had a brain surgery patient, prior to me!)  One did take the time to read a couple of articles about AN's prior to me being moved to her wing!  A little knowledge was better than the ones with none.
I don't know if this was the kind of thing you were looking for but I will go back to my journal and see if I can dig out anything pertinent.
Good luck with the paper, Tony.  I always appreciate your posts.
Brenda

[tony]

Yes - thats it exactly
You seem to be saying more info on what to expect
- maybe suggestions as to how to cope ?
Thanks
Best Regards
Tony

[leapyrtwins]

My neurotologist had me doing vestibular exercises both pre and post op and I found them to be fantastic for my balance issues after the surgery.

He also gave me a full picture of what my possible side-effects would be, no matter how small the statistics were, no matter how likely I was to encounter then.  Although this totally freaked me out at the time, I eventually became very thankful for his honesty.

One issue I had post op was double vision and I don't think that's mentioned to a lot of patients.  We've talked about it numerous times on the Forum, but I'm not sure most docs tell patients it's something they can encounter.  Metallic mouth is another one that should be mentioned to patients more frequently.

Jan

[wcrimi]

I think all my doctors, surgeons, and anyone I went to for a consultation gave me the feeling that the recovery process would be a lot faster and easier than it actually was and still is.   Since, I've actually had a very good experience relative to most, I would guess that most patients have no idea how long a process it is, how difficult wonky head is to cope with day in and day out for many months etc...  I find it odd, because I think they were purposely lowering my expectations for retaining any useful hearing.  So I have to wonder why I was routinely made to feel like I would be almost myself after a couple of months. Yes, I was able to drive and work after about 6 weeks, but it was wonk city any time I walked or even stood up and I am still struggling with that more than 8 months later.  Again, and I'm one of the lucky ones!   

[Keri]

would checking out Bob's thread (Stoneaxe) be of help here? I can't remember where it is, but he polled us with quite a few detailed questions, and many gave helpful comments. A lot of people answered, so you might glean some good info from it. However, I don't know where it is. Steve will know, and he'll know how to put the link here if he thinks it's helpful. (hope this is ok, Steve!!)

Keri

[sgerrard]

Steve will know, and he'll know how to put the link here if he thinks it's helpful. (hope this is ok, Steve!!)

Of course it is ok.    I don't know if it will be helpful, but here is the link:

http://anausa.org/forum/index.php?topic=9306.0

Steve

[teffaz]

Tony,
I had some eye issues that were not properly addressed in the hospital. Please see my post in the AN ISSUES section of this forum. At the moment that post is on page 2 (last post: June 24, 2009). It is entitled "To All Newbies!"

Everything else was handled in an excellent way.

Good luck with your research!

Best,
Brenda (Teff)

[jazzfunkanne]

Hi Tony, am also in the uk ,,my eye was not looked after correctly post op, i think the nurses on the neuro ward should be more informed of the dangers of letting a wide open eye dry out.

[Janet]

My referral to the headache neurologist to deal with post-op headaches was helpful. The sooner this can be done, the better.

[Brendalu]

Tony,

In my case, depression hit me so fast and so hard I seriously contemplated suicide.  My survival sense, fortunately, kicked in and I got myself to a very excellent therapist and psychiatrist.  I would say don't be afraid to share your feelings and your grief, hearing is a huge loss and so is getting used to the new you and you will be a new you.  After four years I am still seeing a team for depression and take Cymbalta and a host of other drugs to help me cope.  I would interject here that I am not a weak person, never have been, but the sense of loss I felt was greater than I am.  I have learned not to keep things bottled up inside of me.  That was huge for me.  I learned to laugh at myself and not expect perfection.  In essence I hung up my Wonder Woman cape and took off the boots.  I have learned to embrace the very new, very different, and very unique ME!

Best Wishes,
Brenda

[grega]

Tony, I echo Keri's thoughts on looking back at Bob's thread for a lotta info from many on surgery follow-up.

Looking back at your opening post herein, you say something that should be very interesting for those in the US, as the current health-care reform "debate" drags on and on and on and on.  Regarding post-surgery follow-up, you said something that is a real eye-opener:

"Its vitually non-existant in the Uk at the moment" 

It goes along with sentiment expressed by several other friends from outside the US in a recent thread on this subject.  The title was something such as "A National Public Health Service in the US?" .....started by Kit W.  Steve and Jim added very thoughtful comments.  It was started within the last two weeks.

Best to ya!
Greg

[tony]

Firstly thank you all for your input
Its clear that just because you leave the hospital
- its not really over for many
I think our health service does the
"urgent," "now," "crisis," stuff quite well
But the long term follow up, rebuild, rehabilitation
is just on the moon ?
Best Regards
Tony

[followingHim]

I have just seen your post and will show my husband for his comments.

Blessings

Ley