Author Topic: sad, angry, frustrated  (Read 4115 times)

hasovschib

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sad, angry, frustrated
« on: October 05, 2015, 12:57:59 am »
So it's been like 6 months after my AN surgery and im just feeling more depressed by the day. I had my 6 month visit with the doc that made the operation and he said everything is "perfect". I told him that everything is not perfect and that im getting more and more headaches, he told me that the head aches are not from the surgery (witch let's face it it's bs). He told me to go see a neurologist for the headaches (i really thought he could shed some light on my headaches) so i left the appointment very sad.
 I guess if they see a clear MRI  and nothing wrong with the incision, they think their job is done. I wanted to start working (kind of a physical job, in another country) but i dont think i could work at that rate (the head aches are getting worse whenever im active).
       So yea, i feel like crap, i feel like no one cares, like they are thinking (wtf is wrong with this guy, it's been 6 month get busy again) witch is the only thing i would like to do but those head aches are just not letting me do it . I just feel so useless and sad, im in the prime of my life but i feel like this tumor robbed me of my life. I cant do nothing anymore, i have lots of debts. Im just sitting all day, stuck, in front of my computer trying to figure out how am i going to get out of this (seeing no way out )
« Last Edit: October 05, 2015, 01:06:25 am by hasovschib »

Doc

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Re: sad, angry, frustrated
« Reply #1 on: October 05, 2015, 07:45:08 am »
Honestly, and I’m sorry to say this, but you’re not going to find answers here for the depression you’re experiencing; you need to seek professional help getting past those issues. As for the headaches, you should do what your Doctor suggested, and see a Neurologist. There could be something else going on?

I’m not going to waste your time telling you about my experience and how I navigated the same obstacles. We’re all different and manage stress (pain) differently. You need to find what works for you.

Take Care!

Doc
« Last Edit: October 05, 2015, 08:18:43 pm by Doc B. »
Jul 2009: Left Translab to debulk a 5cm x 5cm AN. Jan 2010: CyberKnife Radio Surgery to combat remaining AN; approximately 3cm.  MRI Jan 12: Good progress. Last MRI Jan 13: All Good! My life got much better when I received my Scleral Lens.

feline

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Re: sad, angry, frustrated
« Reply #2 on: October 05, 2015, 08:04:40 am »
I agree,
Feline
Walnut size AN removed on June 30 2014 at Stanford with Dr Chang and Dr Blevins facial paralysis, no blink ,no hearing but otherwise feel good otherwise

ppearl214

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Re: sad, angry, frustrated
« Reply #3 on: October 05, 2015, 02:09:34 pm »
Hi all,

Although many, but not all, endure such frustration in the Post-Treatment world of ANs, our hope is that folks can find the compassion and understanding from those that also endure.  This is a very real issue and the ANA, recognizing this after our AN'ers shared their input about this topic, created this "sub-forum" for those enduring emotional stress and issues in our AN journey.

Each AN journey, as we know, is unique onto themselves. We must be sensitive to the fact that others may be dealing with much more difficult issues.  We note that the ANA Local Support groups are so valuable, as you get to meet folks, face to face, and share/educate each other. 

Post treatment for AN's should be followed up either with a primary care physician, ENT, neurologist, vestibular therapist or a specialist for all post-treatment issues.

I would also like to remind everyone that these forums, which the moderators and admins and the ANA office work hard, are to be free of flaming.  Foul language and put downs will not be tolerated.  We are watching this thread to help ensure that this does not occur.

Although we do not sugar-coat things around here, let's show some compassion, watch our tone and most of all, help be supportive of those that share the common denominator of being an AN'er, although the journeys may be different.

Now, let's keep on topics.... and I return you back to your regularly scheduled discussion.

If there are any concerns, the Director, the Moderators and me are more than happy to discuss in PM (private email) here on the forums. Our inboxes are always open.

Thanks.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

alabamajane

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Re: sad, angry, frustrated
« Reply #4 on: October 05, 2015, 05:15:09 pm »
Hasovschib,
Welcome to the forum and I am so sorry you are feeling so badly both with depression and intense headaches. Nothing is more debilitating than pain especially when the origin of the cause is not known.  You also seem to have a most unsympathetic Dr! But you are correct to a point that many of them are very shortsighted when dealing with the after effects of the surgery. The surgeon cuts,,, he doesn't always do the best at following up with post symptoms.   

   Did you have an ENT (otolaryngologist) on the team for the surgery? If so, and I hope you did, you should be seeing him/her for follow up also. This might be where you could get more empathy for ongoing problems. If not then maybe you should see a neurologist in case it is something else. At the very least, either of these Drs might be more sympathetic and prescribe an RX for depression or refer you to a psychologist to listen to you and help.

Please don't give up on recovery and healing! These surgeries are NOT like a broken bone that heals in 6 weeks,,, this is brain surgery and the brain demands time to heal from the "injury"!

Please get some help,, somewhere,,, it is so necessary to know yourself and your unique needs. You may not be able to pull yourself out of this  without help, either meds or temporary therapy. But it will get better,,, 
We care here and have you in our thoughts and prayers,,, please stay with us and let us know how your headaches and how YOU get,,,,

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Kerrybr92

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Re: sad, angry, frustrated
« Reply #5 on: October 05, 2015, 07:16:28 pm »
Hasovschib,

I first want to say welcome to the forums.  Second I want to say I am sorry that you are going through this.  I understand exactly what you are going through.

For me, the doctors ahead of time never really told me what to expect afterwards.  Sometimes I think it is a concerted effort so that we do not run from the surgery!  Other times I think that the neurosurgeons just don't understand what the aftermath is like because they see us so infrequently and have a mind set only for the MRI. 

I have felt at times that people are just over my surgery and certainly think I should be.  But issues from it linger.  I am four years out this November.  It is easy for me to say but please listen.  It does get easier or at least you lawn to adapt better.  I had an increase in headaches for the first year post op but I only get them now when I am very tired.

I spent some time feeling like my life was over.  And you know what it has changed and some things are over for me.  I used to run everyday before surgery.  Now I can not even run up the stairs with out feeling totally dizzy and getting a headaches.  So I am done with that.  It is a huge bummer but I try (I am not that good at it) not to feel sorry for myself. 

I would see a neurologist about your headaches.  It is worth a try.

Hang in there.

Kerry
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

 


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