Need to Vent

[jbbrown15]

I haven't posted much, but like to come here once in a while and see that I'm not alone.  I've reached a new level of frustration and need to vent a little.

I was diagnosed with a 2.9 cm AN in September of last year.  I had been suffering from fatigue and (what I now know is) vertigo increasingly for months.  I thought I was worn out from my full time job and 3 kids under 5.  My husband stays home with them, so I had to go back to work 6 weeks after giving birth.  I started having real head problems my first week back at work and it just got worse.

I chose to have fsr at Jeff and finished my 26 treatments right before Thanksgiving.  My symptoms worsened during treatment, but were helped by steroids.  I have not been steroid free for more than a few days since October.  I'm on my 3rd or 4th taper now.  Each time I end up with vertigo that makes working next to impossible.  I think this time I have to get off (my last dose should be  Monday) because I'm risking serious side effects.

So, my main stress is work.  Like I said, my family of 5 depends upon my salary.  I'm an attorney and expected to bill 1,850 hours a year.  That's about 150 hours a month.  I used to work 10 hour days to reach that goal.  I just can't do it anymore, and I can't tell my bosses when (or really if) I will be able to again.  My neurosurgeon is very confident that I have a good prognosis for vertigo, but he was also confident that I could keep up a normal schedule through treatment and keep serviceable hearing (neither of which happened).  I have really tried to keep my bosses updated on my struggles and progress (it does appear that the tumor is dying), but I think we're all tired of me not getting better.  I don't want to leave, but I think I may have to apply for long term disability benefits soon.  It wouldn't be enough to pay our bills, but if I'm home my husband can work. 

I'm scheduled for a (4-5 hour!) consult at the Jefferson Headache Clinic on May 2.  My vertigo triggers migraines, which was the impetus to get in there.  I also hope that a neurologist will be better able to understand what I'm feeling and advise if it will get better if the tumor shrinks. 

It's a been a year now since I have felt good.  I feel like I'm working so hard to get myself out of bed, get to work, love and help with my kids, and (barely) take care of myself.  And I still am not succeeding at work. 

Thanks for listening. 

Jean

[Kaybo]

Jean~
So sorry that you are having to deal with this!    If you go on disability, will you get your position back?  Sounds like to me some devoted rest might be what you need.  I didn't have radiation, but don't the side effects usually taper off as/after the tumor dies??

Feel free to vent here - that's what we are here for!


K   

[Jim Scott]

Jean ~

You're obviously under a lot of stress.  Many of us have faced similar situations and we can empathize with you.  I can only tell you (from experience) that things won't always be this way and of course, you'll be in the thoughts and prayers of many so you aren't dealing with these struggles, alone.

Jim

[mattsmum]

hi jean - i don't really know what i can say that would make you feel any better; you have been having a tough time and sometimes when things are not going the way expected it can be hard to think things will ever improve. but there are lots of people here who will empathise with your pain, and remember times when they found it hard to see a way forward, and who now are in a better place and feeling good again.
i had radiosurgery last july - and my post treatment course has not been as smooth as i was expecting. i have tumour swelling which has caused trigeminal neuralgia, worsening of my hearing loss, worsening of my hemi facial spasm, big balance problems, hyperacusis and a prolonged 4 month fever. i stopped having any faith in my health - i was just waiting for the next complication to set in. thankfully i am now feeling a whole pile better - i only realised quite how ill i had been feeling day after day when i started to feel better! i was fortunate (in one way) that this has all occurred while i am on a career break so i have not had to deal with work too.
i hope you get some reassurance from your consult that things will improve, and over what sort of time frame.
meanwhile - if you need to vent, then vent!
and hang in there,

best wishes,

vikki

[cindyj]

Hi, Jean...so sorry to hear you are suffering so w/ the vertigo.  Having had many, many bad times w/ vertigo myself (including emergency room visits), I know (as many others here do) how horrible vertigo can be.  I didn't have radiation, but from what I've read here, things sometimes do get worse for awhile before they get better.  In the meantime, perhaps some vestibular therapy might be tried?  I must admit, however, that it usually made me even sicker, and I didn't keep it up long.  But, there have been others here who had success with it.  I have heard/read, for extreme cases, that there are other measures which can be taken - an injection of some sort which kills off the balance nerve (I forget what it's called), if things don't improve for patients.  Other options as well, I believe.

Hang in there and come vent here any time!

Cindy

[mar50]

Hi Jean  -   Since it has been a few days since your last post, I hope you are feeling a little better.  I think this forum is a great place to vent and I would encourage you to do so as much as you want! 

I read your post and it brought back so many memories, very strongly, for me.  I want to encourage you that things will improve - maybe slowly and in fits and starts, but it will get better.  I am about your age (now 42, but 37 when I had surgery and GK) and am a working mother, whose income and benefits were/are very important to my family (definitely adds to the stress of the return to work).  I know how difficult it can be to return to work when people, even the most well-meaning, do not understand, and cannot possibly do so and there are a million other pressures around you.

Also, steroids magnify everything in a way I would never have thought possible.  Are you done with your taper?  That's when I noticed things begin to turn around, although I know everyone is different (probably one of the biggest lessons this whole experience taught me).

I don't know if you were looking for suggestions, and if not, just ignore, but two thoughts I have in looking back:
1:  My OB/GYN had suggested to me at the time that I try some therapy.  I never did, and am sorry that I didn't.  I think it maybe could have helped, if only for someone to go and cry to.
2:  I found acupuncture to be a real help.  After I finished my final round of Decadron, I felt like I needed some help getting my body back into balance (and I am definitely not into that type of thing).  It was a struggle to find the time, and it cost some $$, but it was worth it to me.  Maybe mostly because it gave me a chunk of time in a dark room by myself.


Please feel free to vent, either via this board, or you can personal message me.  I hope you are finding some peace, although with three kids under 5, that might be a stretch

Hang in there, Jean, things will look up.

Martha