SML (Scarlett's) updates

[SML]

Nancy,
No hip pain for me at all. All pain was around the head area, and of course the nausea.  I did have the lightheadedness before surgery, so I don’t know if that made a difference or not, but I didn’t have the double vision some have experienced. It was more comfortable to look straight for the first few days rather than moving the eyes back and forth. Give yourself time to adjust.

Scarlett

P.S You won’t have time for shock. They move things along pretty fast. And you’ll have all kinds of wonderful people there talking to you. Dave will be allowed to stay with you in the first pre-op area till they are ready to move you.

Your Gonna Rock This!

It will be such a great relieve to have it over with! Trust me.

Scarlett

[NancyMc]

OK . . . trusting.
nANcy

[SML]

Rich,
I'll check for Scarlett's update, but how is her pain level, neck, head?

Thought an update on my situation would be better answered here.

This Wednesday will make 4 weeks post-op for me.

I’m still dealing with severe headaches at nighttime. I have noticed its usually after entering REM. I have never been one who remembered dreams (ever), but now when the headache wakes me up, I remember the dream (they are usually pretty stupid ones). I’ll take ½ a percocet and it’s usually gone within ½ an hour. My neck is still pretty stiff for some reason, and I take a Valium before bedtime to try to get some sleep at night.

I’m still having shooting pains in my AN ear (and also around the incision area) occasionally, which I thought should be gone by now. I will ask Dr. Barker when I see him on the 27th. 

I do have a question for everyone…

How do I know if I need to go to PT? I seem to “get along� just fine, but obviously I’m not 100 %. Yesterday I got really dizzy walking up and down the grocery store isles looking back and forth. Should I go for the evaluation and see what they tell me? I was told I need the doctors permission before PT, so do I wait till the 27th to see him?

I also need some advice about returning to work.

I’m really nervous about returning to work. Unfortunately, I had to start a new job about 4 years ago after the company I was with for 25 years closed it’s MA plant. I had a desk job at that company, but I’m not so lucky with my new company. I work in Quality Assurance for a wire and cable company and it requires constant heavy lifting (anywhere between 20 to 75 lbs) and lots of spinning wheels that I need to put the cable onto before testing. I’m on my feet the entire shift. They are now restructuring the work hours. Starting in May they go to 12-hour shifts, 2 days on, 2 days off, 3 days on etc. 7 days a week. Being there such a short time, I know I will be given the night shift 6 P.M. to 6 A.M. (that is if I’m not laid off). This place doesn’t believe in “light duty� or returning part time. Any suggestions on how I can handle this? I wish I could get another job, but who in the world would hire me now?

Scarlett

[NancyMc]

Scarlett,
I was provide PT and OT scripts when I discharged.  They thought I was doing above average and weren't worried.  Since I have a 4+hour RT for health provider coverage, they wanted me to be able to pay out of pocket if it would save transport $$$.  I would wait; four weeks is not very long for recovery (experienced one that I am  ).
I'm so down about all your headache and other pain.  Someone on the forum recently mentioned a neck pain care referral from Barker.  Call him or Heather.  Do you have her pager number?
As I mentioned PM, that job is inappropriate for you.   From my experience, communicating with you, I'd hire you in a flash.  No one needs to know anything about your health concerns.  The economy will come back, and you will flourish.  How about health care?  Find something you are passionate about and go for it.  You deserve and can do it!
Nancy

[SML]

Hi Everyone,

I just wanted to let everyone know I’m still here. I haven’t posted for a little while, but I have been lurking in the back round all the same.

Tomorrow makes 6 weeks for me! WOW! I was supposed to have seen my doctor yesterday for my 6-week check up, but it was canceled on me and now I go May 7th.

Rich and I have been busy trying to figure out what our work place is doing. They made me sign papers saying I’ll work 12 hr shifts, and work whatever shift they want to put me on etc… I tried to tell them, I don’t think I’ll be able to do that for a while, but they insisted I sign the papers anyway. They are changing Rich’s hours as well. He was supposed to change starting next week (they moved his work week up one day, so that he starts on Sunday night, and is done Thursday at 6 AM) so we scheduled my appointment to a Thursday afternoon. This morning he tells me, they are postponing the change maybe for another week or two! So now he will have to lose 12 hours pay in order to take me to my appointment!!! 
Short-term disability says they need papers from the doctor or there will be a gap in coverage, and we’ve also been trying to get the doctors office to send them what they need!

Combine all this with the everyday headaches I’ve been getting, I hope you understand why I haven’t been posting much. It’s hard for me to try to stay in a positive mood and concentrate on my recovery with all this nonsense going on!
 
I was recently reminded that I’m not always going to have good days (either physically or emotionally), but that should not stop me from letting my new friends know what’s been going on with me.

Thank you Keri, for reminding me of this, and that it’s okay to post on the bad days too.

Best wishes to everyone.

Scarlett

[NancyMc]

I had the impression at the brunch that your employer was going to be caring and flexible.  I guess they changed their tune.  I'm sorry to hear you are having bad days.  I'm sure the doctors will provide whatever documentation you require.  If they don't, let me know, and I'll have a word with them!
I hope you can get a handle on the headaches soon.  That must be very frustrating.
Thinking of you,
Nancy

[moe]

Combine all this with the everyday headaches I’ve been getting, I hope you understand why I haven’t been posting much. It’s hard for me to try to stay in a positive mood and concentrate on my recovery with all this nonsense going on!
 
I was recently reminded that I’m not always going to have good days (either physically or emotionally), but that should not stop me from letting my new friends know what’s been going on with me.

Dear Scarlett.

Please DO post on those not so good days.That's the main point of this forum! I'm sure a lot can relate, and that helps you feel better, maybe.

Sorry to hear about the headaches. I personally had headaches for 6 weeks post op, and they did  go away. I went through a couple bottles of vicodin and then weaned myself to tylenol/motrin .

I'm not familiar with short term disability and such but get that letter from your doctor! You should not be working 12 hour shifts if you can't do it.

I'm almost 3 years post op and just the past few days have been feeling awful with dizziness/disequilibrium problems. Oh no I have another AN brewing!
No, turns out it was just hormones, which exacerbated the disequilibrium that I will always have.

One day at a time
Hope you're feeling better
Maureen

[SML]

I had the impression at the brunch that your employer was going to be caring and flexible.  I guess they changed their tune. 

I beginning to believe they know not what they do!
I'm not back to work yet and I'm sure the doctor will give me what I need to extend my leave until I feel ready to go back, but all this back and forth stuff is stressing me out!

I personally had headaches for 6 weeks post op, and they did  go away. I went through a couple bottles of vicodin and then weaned myself to tylenol/motrin .

I'm almost 3 years post op and just the past few days have been feeling awful with dizziness/disequilibrium problems. Oh no I have another AN brewing!
No, turns out it was just hormones, which exacerbated the disequilibrium that I will always have.

One day at a time
Hope you're feeling better
Maureen

I'm so hoping time alone will rid me of the headaches. I have lived with them long before being diagnosed with an AN, so relief from them after brain surgery would be nice!

I also wonder if I will ever be free of worrying about this. Like you said about fearing that another AN is growing when symptoms kick up.

You're words are right on.... one day at a time.

Thanks,

Scarlett

[ppearl214]

Hey Scarlett,

I'm following along in my typical fashion.. .and checking your updates to see how you are doing.  I'm sorry to hear work is being a real pain in the petunia! Just let me know and I'll take my wooden cane to them!  Sounds like the dr is working closely with you and please keep us updated on that!

My sister first shared with me, when I received my initial health ecch! years ago (not my AN) that "you are entitled to your good days and you are certainly entitled to your 'not-so-good' days...."... and she's was right.  As you note, there are many that try to put the AN journey behind them (even knowing that we need to be monitored down the road for potential regrowths... all part of this journey that overcharges for the ride!)  and many that can't.  I also believe in taking things one day at a time... "day by day, inch by inch..." is my mantra that many here know that I hold dear to me.  You actually met me on one of my "not so good" days, but like you, we try to muster the mental strength to forge forward, as we refuse to let it beat us down. 

I know you are having a tough time with the headaches and not sure if you have perused the Headache forum here.  May be worth a peek if you haven't. I'm working with Faulkner headache clinic in Boston now for mine, which are non-AN related, but maybe seeking out a headache specialist may be an idea down the road.... just a thought.

Hang in there.... hugglez to you and Rich.... and I'm thinking of you!

Phyl

[Jim Scott]

Hi, Scarlett ~

Like everyone else, I'm sorry to learn of your recent and ongoing stresses, especially the headaches.  Your work situation sounds all-too typical.  I won't belabor that point except to say that I hope you'll be able to get things straightened out before long and relieve some of the stress you're dealing with, which can't be helping your headaches. 

Keri gave you good advice.  Although we love to read success stories and positive news, we're an AN support site.  The operative word being 'support'.  That means we try to offer solace and support to every member who needs it, no matter their situation or issue.  We support good recoveries and clear MRI scans as well as surgery or radiation anniversaries, birthdays, etc.  We also support folks who struggle with any of the many complications ANs and AN surgery or radiation can bring.  We honor both good days and bad.  Those who need a place to vent can always come here and receive attention as well as empathy from those who've 'been there'. 

Frankly, Scarlett, I wish every post could always be totally positive - but that is simply not reality.  Besides, if every AN patient had a quick and complication-free recovery, we probably wouldn't need this website or these message boards.  Then what would I do?     

You (and Rich) are valued members here.  Thanks for posting and always feel free to post again, no matter the reason or whether or not everything is going well. 

Jim

[Keri]

well said (as usual !), Jim.

[EJTampa]

Hello Scarlett and Rich!
 
I'm happy to hear from you guys again, but wish it was under better conditions.  Stress is the last thing you need added to the recovery.  I hope you never feel like you shouldn't post when you are feeling down.  I also don't get on as often as I used to, mainly because of work, but I am glad I got on now to let you know we're still thinking about you guys and prayers are still going out to you both.
 
Ernie

[sgerrard]

Hi Scarlett,

Seems I haven't said hello to you for a while. I hope you are able to hire Nancy as your employment counselor, her advice seems very good. I don't think the long hours and heavy lifting job sounds right for you either. Despite the economy, there are still jobs coming up, you might be surprised what you can find.

I also hope you can deal with the headaches, both real and figurative, and get the paper work stuff figured out. Nobody needs stress in their life.

So other than all that, though, you're doing fine, right?

Steve

[anissa]

Hi Scarlett, I didn't want to read along and not post.  I'm sorry that you are still having pain, that just stinks.  I hope that you can get some answers at your appointment next week, my 5-week is the same day.  Just wanted to let you know that I'm thinking about you and Rich and praying for things to come together with both your jobs and your health.  I've also been a kind of a lurker these days, I'm glad you "outted" yourself.  Keep in touch!

Anissa

[SML]

Thanks Everyone,

As always, your support means the world to me.

I think the work situation is what is really bringing me down the most. I found out last night (through the grapevine) that when I am ready to go back, I will have to work 12 hr shifts from 6 PM to 6AM (2 days on 2 days off, 3 days on 3 days off etc...)! I’ve never worked nights in my life! I also found out that there are two jobs (positions I asked personnel for) that they gave to other people. I’m thinking they want me to quit, but for now, I just can’t see anyone hiring me after having a brain tumor. It’s not like I could hide the fact. For one, I’d never pass the physical/hearing test required by new employers. We also need the medical insurance!
With this schedule and the one Rich is on, we will get to see each other every other weekend! I feel the pressure to try to figure something out soon.
Once I do, I’ll be home free!

In the meantime, I appreciate all your kind words and support. I’m sure my head would have exploded by now if it weren’t for you guys/gals.

I will keep you updated on my situation.

Thanks again,

Scarlett