Author Topic: return of wonky head monster  (Read 6332 times)

Soundy

  • Hero Member
  • *****
  • Posts: 1328
  • prophetic picture done by my 5 year old, June'04
return of wonky head monster
« on: August 29, 2011, 07:44:22 pm »
I am 4 years and 2 months out and have never lost all wonky headedness , but have taken two falls with injuries in last month or so ... and neither fall was done while doing anything unusual ... stood up from tying shoe and just kept falling back breaking tail bone ... the 22 looked over my shoulder at our coach and when I turned head back forward I rotated around in just kinda sat down on my folded up leg tearing up knee ... now walking with walking stick all the time for added balance

I am running headlong at 50 and can't keep falling ...eventually I figure I will fall and break a hip or crack noggin on the ground ... something I fear ...

I have had a return of headaches ... they are not bad yet  but after being well controlled with Lyrica for about 2 years I am beginning to have at least two a week ...several a month that take a couple hydrocodone to shake

also having alot of twitching of eye and corner of my mouth on surgical side ... my face and scalp is numb ... and metal mouth is strong again ... and when I yawn and sometimes when I am just talking my eye closes on surgical side

I thought when I got my headaches under control that things would be good ... the return of these symptoms has happened over last 6 months or so ... but the falls have brought me out of denial that anything is wrong ...

I am scared of AN regrowth ... hoping it is just screwed up facial nerve ...insurance still won't pay for the yearly maintenance MRI that doctor wanted done ... so haven't done them ... now with everything going on I can get one and not have to resort to the plan my PCP and myself came up with... go in and faking bells palsy and get one that way ... now have legitimate complaint ...

when I go for knee follow up we will set up MRI ...

I thought I had a question but think I just needed to rant ... I get tired of smiling and saying everything is hunky dory so as not to worry those around me ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3207
  • Life is good again!!
Re: return of wonky head monster
« Reply #1 on: August 30, 2011, 07:58:48 am »
Oh my, Soundy ......

I cannot imagine having to fake a symptom to qualify for an MRI.  That blows my mind that an insurance company will not pay for yearly MRIs recommended by your doctor.

Many prayers that this long overdue MRI is clean and there is another explanation for your return of symptoms.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Chances3

  • Sr. Member
  • ****
  • Posts: 266
Re: return of wonky head monster
« Reply #2 on: August 30, 2011, 12:53:26 pm »
Hi Soundy,

I'm sorry to hear about your symptoms.  You have every right to rant, and as you know better than me ( this newbie ), we all understand rants.  Sometimes life can be very unfair.  I say that a lot when I want to be me again, but I am reminded of those less fortunate, or about the very close love ones I lost when they were still so young.  So go ahead rant, and if you can, but try and find the better side of life.  I hope the doctors can make you well again soon.  I have you in my prayers.

God Bless.

Soundy

  • Hero Member
  • *****
  • Posts: 1328
  • prophetic picture done by my 5 year old, June'04
Re: return of wonky head monster
« Reply #3 on: September 05, 2011, 05:36:23 pm »
have talked about getting the MRI the wrong way and can now get it with a clear heart ...

walking with my walking stick from camp and I am more stable ... waiting on medical expense card to set it up ...it will take 25% of total bill then add 8% to unpaid total ... it will just make payments manageable
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

FLsunshine

  • New Member
  • *
  • Posts: 42
  • A journey of a 1000 miles starts with one step
Re: return of wonky head monster
« Reply #4 on: September 05, 2011, 07:53:54 pm »
Soooo sorry to hear of your recent challenges.  You've had a really tough time of it all.  Sending you my thoughts and prayers that you'll get some answers and relief.

Suzanne
3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

mattsmum

  • Full Member
  • ***
  • Posts: 101
Re: return of wonky head monster
« Reply #5 on: September 07, 2011, 01:13:25 pm »
i was just reading earlier, that after compensating for a one-sided vestibular loss, episodes of decompensation can occur for a variety of reasons (eg flu, viruses, change in lifestyle) that respond to repeated vestibular rehab. so hopefully this is what is happening to you, rather than the dreaded re-growth.
best of luck.
vikki
LINAC radiosurgery july 2011 for 1.5cm tumour (uk)

JimmyD

  • New Member
  • *
  • Posts: 26
  • Don't sweat the small stuff
Re: return of wonky head monster
« Reply #6 on: September 13, 2011, 12:37:25 pm »
I have Horizon Medicare Blue and they pay for two or three MRI's a year no deductable.
Glioma Tumor left optic nerve 1960,RS AN 2.2CM FSR 5 treatments @JHH by Dr Williams in 1999 & LS AN 2.6CM 30 treatments 2007 by Dr Brian Chon@Centra State,NJ.Blind in L.eye,deaf in R.ear.Test for NF2 came back negative.Doing OK.

Cynaburst

  • Jr. Member
  • **
  • Posts: 74
Re: return of wonky head monster
« Reply #7 on: June 27, 2016, 05:17:04 pm »
Soundy - Wondering what became of you.  I am experiencing a new bout of "Wonky Head" almost 15 years out of surgery.  Am going to schedule a scan soon, but it is hard not to worry that I am having a regrowth.  I have, however, had some intermittent wonky headedness now and then, which has gone away, so I am hoping that is what is going on.

Would love any input from others who have gone through similar.

Soundy

  • Hero Member
  • *****
  • Posts: 1328
  • prophetic picture done by my 5 year old, June'04
Re: return of wonky head monster
« Reply #8 on: May 10, 2017, 05:37:18 pm »
It's been a long time since I've been here. No internet access at home and forgot password and then forgot email address and locked myself out.

Life's about the same. Headaches, stumbling gait, ringing in deaf ear is deafening (LOL she laughs sarcastically), no MRI in years, facial to AN side.etc etc.

Basically no insurance coverage, have not been able to find work close to home. One offer of work of 4 hours 3 days a week, an hour and a half away. $7.25/hour. So that would be $87.00 /week. $59.40 for gas. So $27.60 a week but not even that because I didn't deduct tax and SS. So depressed and pissed off. Still not disabled enough for disability according to the powers to be. Now they say I need to do more MRI of head and hip, do rehab therapy,  and visit doctors more often to secure more proof. My proof is too old. With a regular Office visit costing me $189 I just don't go until things are really bad. Evidently this means I'm not that bad or I'd go more often. What this means in my real world is we're broke and my husband is working himself half to death trying to keep our heads above water.

I'm sorry. I didn't come to rant. Life just kinda sucks right now.  My baby is graduating high school on the 19th. Awards day was today and she has full ride to complete LPN and if she wants to go for RN after that she can do co- op and work at hospital 20 a week and they pay her way.My older daughter just finished her first year of college Deans list and had scholarship money added gor next year. I should be rejoicing ( and I am) but am so soul sick that I'm miserable.

My regular doctor who has been my advocate,friend,confidant etc for 20 years is retiring. I feel like without him I'll just crawl in a hole and not come out. He has managed to pull strings and get things done when I have been turned down for care.

Ok. Really going now. I haven't come here because I knew I'd do this. Get upset. I'm gonna read around and maybe post when I come down a bit. Sorry.
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

lilith

  • New Member
  • *
  • Posts: 23
Re: return of wonky head monster
« Reply #9 on: May 11, 2017, 06:57:19 am »
Hi Soundy,

A big hug to you. I have no words except I really hope things improve for you.

Lilith
33mmx19mm AN (Diagnosis 5.05.2016)
Radiosurgery in Mexico City: 25.05.2016
Pre and post-radiosurgery: little bit of imbalance, mild hearing-loss, wonky head.

 


anything
anything