SML (Scarlett's) updates

[NancyMc]

Well, this just rots my socks (as my sister-in-law who moved to TX has taught me to say).  I'm thinking Dept of Labor here and a good lawyer.  I'm really pissed (can I say that, Phyl?).  If all of you who have not met Scarlett had any idea what a sweet, caring, considerate, understanding, selfless person she is (and Rich, too), you'd be marching on in there with me and giving this employer a piece of our minds!  They are behaving as if they want you to quit.  What they are doing must be against some law. 
Certainly, if Rich stays there and you find a more suitable source of income, you will still be covered by his insurance plan.  No?  And I've never had to take a hearing test for employment.  No one needs to know you had brain surgery.  No one can tell by looking at you, and your headaches are the only remaining symptom, aren't they?  Plenty of people have chronic headaches.  Have you glanced at employment opportunities in your area?
I'm so sorry you are having to deal with this unpleasantness.  You don't deserve it.

[moe]

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!
 I feel the pressure to try to figure something out soon.

Scarlett
So much to worry about- I feel for you. With the economy the way it is, job security is not always easy. I don't remember what it is you and Rich do for work..
I gather your work is labor related??

My instincts say- get the short term disability or whatever, and keep your mind open to doing something different. Sounds like you are being put to the "back burner" at work.  

If you decide to go  a different route in work and apply for a different type of job, they don't need to know that you had a brain tumor removed during the interview process. That would make them biased.

When I got settled here in WA, I applied for a nursing job-the first place did not hire me.(That has NEVER happened, being a nurse)>
 I stupidly mentioned something about my AN removal and facial paralysis. I felt self conscious about my appearance, and maybe my insecurity showed and they used it against me.

Second place, I did not mention a thing. I got hired and am doing just fine.
Yes, I am deaf on one side, but that was not disclosed until AFTER they hired me.

One day at a time... It'll work out.

A lot of people go a different route with work after this surgery because of limitations, so who knows, maybe it is time to do some soul searching for 'something different.
Best wishes,
Maureen

[Keri]

Hi Scarlett,
Rot my socks too! This makes me mad as well. Like Nancy, I'd hire you in a minute. I could really see you doing something people related for a job.
I'm so sorry that this is adding to your stress. Plus I can't imagine having a schedule where you and Rich would only get to see each other every other weekend! Crazy!
Regarding the brain tumor / interview thing.. your brain tumor is past tense. I don't see why it would have to come up either. At the same time, I wouldn't want any insurance issue to compromise your follow up appointments, MRI's or anything like that. I'm no HR expert, but it doens't seem like the surgery you had in the past for a brain tumor that is now gone should affect your job prospects. 
I'll pray for you to have peace and comfort and direction about what to pursue.
We all care about what happens with you!
Keri

[Sue]

Hello,

Well, my socks are rotted too!  Employers can be very, very, very bad sometimes.  We have heard that scenario before on here.  Not often, but it happens.  Sounds like they are putting you in a position where you will quit them, since they can't fire you.  Bad employer!   This should be against some kind of law, but it probably isn't.  I do hope this works out for you.  I hope your headaches go away.  Talk with Cap't Deb about headaches.  She has a lot of good answers on that.  And I've put a hex on your employers, or the evil eye, or something.  They should be ashamed.

Sue in Vancouver USA

[Keri]

Hi Scarlett and Rich,

Scarlett, don't you have a doc appt Thursday? Let us know how it goes please! Nice to have you and Rich posting again! Maybe I'm wrong about the date, but I think you said Thursday...

Hope to talk to y'all soon,
Keri

[SML]

And I've put a hex on your employers, or the evil eye, or something. Sue in Vancouver USA

Thank you guys for making me laugh again. I love the “rot your socks� expression too! I think I’ll be using that a lot!

I have calmed down some about the job. I have decided to just take it one day at a time. I know if I do go back there, it will only be until I find something else that I am more passionate about (unless of course they do come through for me)! I am under Rich’s insurance, so as long as he is there I will be covered.

I do have my first post-op check-up tomorrow afternoon. I’ll be interested in what he has to say about the headaches. I hope they are just related to the stiff neck and maybe PT will help with that. I also have been having the shooting pains in my AN ear and head since surgery (yesterday and last night were pretty bad). When I mentioned those to him while still in the hospital, he said those should go away! Maybe he’ll be able to tell me when? I’ll keep you posted on how it goes.

Maureen, to answer your question, I work as a Quality Assurance Technician for a wire and cable company. Unfortunately it does require a lot of bending and lifting. I wish I had a special talent like so many on this forum! I do play guitar (although I haven’t picked it up for a while). Maybe I should dust it off, grab a hat, and go play on some street corner for tips???   

Scarlett

[Cheryl R]

Cheri, I know exactly how you feel with the repeating of all of what we have been thru.           I look pretty good if you see me in in a carpeted area inside.    This the worst when stop in to see my co workers and they tell me to come back to work.     Sorry, My balance would be off so fast after running up and down the halls.      They are never with me outside or in tiled areas or bad weather as even walking on a wet street can throw me off. esp if dusk or dark out.   Forget ice too!        Not bad but just enough to look not right or if right then I feel not right.    Have to have a rail on steps too.              In my house do fine if don't turn fast.   Have nightlights for night which are sure needed.
I have had the oldest granddaughter ask why I walk funny.                                          I am just grateful I can walk,but would love to feel normal again.                                                 Cheryl R

[Keri]

Cheri... how old is your daughter? sounds just like mine!

Scarlett and Rich - what happened at the doc on Thursday? How are you all doing?

Hope to hear soon and hope all is well!

Keri

[SML]

If I could make it all go away, I would.  For now, we'll all continue to be here for one another.  What a blessing that is in itself! 

Luv to all,
Cheri

I may not post every day, but I will always come here... because the way everyone cares about each other truly is a blessing!

Just a quick update to let you know all went well with my 1st post-op check-up last Thursday. The doctor wants me to go for my base line MRI May 31st, and then every year after that. I will also be going for VPT evaluation 5-29-09 to see if they can help with the balance issues as well as the stiff neck. As far as the headaches and the shooting pains in the AN ear/head, he wasn’t very clear about when I could expect them to go away. What I need is time and patience. Slow and easy wins the race right?

I hope everyone had a nice Mothers Day!

Scarlett

[wendysig]

Scarlett,

I fell behind on everyone's posts over the past month due to being away and other issues.  Sorry to hear your emplyer is giving you and your hubby a hard time.  I hope things get better there.

As for recovery, slow and steady is the right idea.  Recovery is definitely not a race and requires lost of rest and patience.

Best wishes,
Wendy

[LisaP]

Scarlett,

Been thinking of you, hang in there, I go to work everyday and many of the days I don't feel well and I still W&W.   Keep posting, we are all here for you!!

Best wishes,

LisaP

[SML]

Hi everyone,

It’s been a while since I’ve updated on my progress, so here goes:

I had my 1st MRI, since surgery, on May 31st. I haven’t heard from the doctor’s office, but I picked up the report last Friday and from what I read all looks good, “unremarkable� was the term on the report. I wasn’t expecting any evidence of tumor left since the doctor said they got it all, but I was anxious just the same.

I have also gone to two Vestibular Therapy sessions. My physical therapist has been giving me exercises to improve my balance as well as working on my neck muscles. I have to say, I think it’s really helping (although I have had severe headaches the night after each therapy session).  I can turn my head much easier now and my eyes play catch-up much quicker! The headaches throughout the day are still there, but the nighttime (REM) severe headaches are getting further apart.

I’m also experiencing a lot of pressure in my AN ear, and some days in both ears. I’m also still getting those sharp shooting pains in and around the AN ear too. Don’t know what that is all about!! Have any of you experienced this too at 3 months out?

All in all, I can’t complain. It’s going to take time.

Life is good!

Scarlett

[Jim Scott]

Hello, Scarlett ~

Good to see you posting - and with positive news, too! 

I'm pleased to learn that your MRI was 'unremarkable', as you expected.  Your one-sided pain at the former site of your AN and slow-but-steady advances in recovery seem quite normal and similar to what I experienced on a slightly shorter timeframe.  I didn't have the headaches but I trust yours will dissipate, soon.  You have the exact right attitude that all will be resolved, in time, and it will.  Indeed, life is good. 

Jim

[SML]

Hi everyone.

Just wanted to let you know I got the results for my 1st yearly MRI and Dr. Barker said everything looks fine. Yippy!! I’m good to go for another year! 

I had a chance to discuss some of my concerns, namely the continued stabbing pains I’ve had in my AN ear and head since surgery and daily headaches and pressure I get in my head and both ears. He gave me hope that there is still a chance that these issues will resolve themselves over time, but he also dashed them in the same breath, telling me they may be part of my “new normal”. He didn’t seem to feel that any of these issues were indicating something more going on, so that’s a good thing I guess. I did have one issue that he said he had never heard of his AN patients complaining of, and that is that my right (AN side) eye aches all the time and feels like it’s being lightly pulled downwards. I have seen my eye doctor earlier this year, and all looks normal with the tests they did. So… 

On the headache front:

I am currently seeing a headache specialist, Dr. Autumn Klein at Brigham and Women’s (thank you Phyl), who has me on 900 mg of Gabapentin and 100 mg of Lyrica daily. I have been taking the Gabapentin for about 6 months now. I gradually worked my way up to the 900 but when I tried 1200 mg, I had adverse reactions and I still had the headaches so I went back down to the 900 mg. My doctor wanted to add Lyrica to the Gabapentin right then and there, but my insurance company decided that before they would approve the Lyrica, I had to try another neurontin first. I went on Topamax for a few days, but that immediately made me feel worse. I had a terrible headache that was NON-STOP for 4 days and not even my trusty Ibuprofen would ease it. I also had some tingling in my fingers. Once my doctor submitted all paperwork assuring my insurance company that I did try another neurontin, they finally approved the Lyrica, and I have now been on it for 3 weeks.

Since my surgery last year I have also gone through VPT/PT with Casey Hagan at MGH in Boston. I found going through vestibular therapy to be quite helpful in making what I considered “good enough” balance to a hardly noticeable (except to those who know me well) stagger every now and then. Gaze stability has also improved tremendously with my homework of “X” exercises. Casey suggested I see a physical therapist closer to home (we’re about a 1 ½ to 2 hour drive from Boston) for my neck and upper shoulder muscle problems. I am currently seeing a physical therapist now that is working wonders with my Trapezius muscle. She is also doing CranioSacral therapy on me.

I don’t know if it’s the Lyrica, Physical Therapy, the CranioSacral Therapy or a combination of all of them, but I feel I have made some good progress lately. With the exception of a few days last week, I have been able to go for longer periods before the headaches and pressure become just too much. For the most part, pain levels are staying within tolerable levels so that I don’t feel the need to take any OTC meds to help me through.

I feel like I have turned a corner (knock on wood).

It’s been a long year in some ways, but it has also been a good year too. I have so much to be thankful for… a wonderful husband, a family that supports me, and all of you wonderful folks here on this forum. I’ve said it before and I’m going to say it again, I don’t know what Rich and I would have done without you! Thank you all for everything you do.

Scarlett

[Doc]

Hi,

I was very encouraged reading your post and very happy your one-year MRI brought good news. That's so exciting! I'm due for my one-year MRI in July; can't wait. I hope you continue to improve and of course, I'm glad to hear you feel confident you've turned the corner...! I'm going fast and about to turn left myself...see you there. Best wishes for continued success and good health!

Take Care!
 
Doc