Post-Treatment > Cognitive/Emotional Issues

Emotion Wreck

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Soundy:
I have had a wreck of sorts...

Tomorrow I finally get to see a new doctor after insurance woes and my surgeon quitting to write
country music :o ...

I have been looking forward to it and getting some problems looked into ...balance ain't great but I can deal
with what I have ...have only actually falling twice in the 16 months since surgery... hearing is muted
in hearing ear and that needs adressed... but mainly my headaches need some resolution...

I was glad to find a new doctor and now on the eve of appointment I am apprehensive...

I have not slept much in past week...read a ton of books ...good thing there is I am ready for several
AN Book Club discussions  :D ...I come on here at all hours of the night when I can't get back to sleep and read posts
and have so much to say but remain quiet for the most part... I am worried that a new AN or something is growing
on left side... I know unlikely but something is reducing hearing ... I have trouble remembering things more so
than usual ... my facial and scalp numbness is worrying me ... after getting almost back to normal why would it get
cranked back up??? to many questions and not enough sleep lately ... have to drive 2 hours to get there and
have to be there at 8:30 to fill out a stack of papers ...

Right now I don't even want to go...

I thought I was through with any major emotional ups and downs but I'm not and it makes me feel weak... I am
going to get up and go...I have a mile long list of questions for the new guy... and a copy of the article
Protect Your Balance or Else that some one posted , that I have highlighted with things I was trying to make my old
doctor understand and he didn't understand and discounted the problems as pretty much my imagination... like
the bouncy vision of distant background objects that plague me ... (thanks to who ever posted the article ...it made
me feel so much better reading that I was not he only one) ...

I tried to explain it to EX Doctor as being like the animation cells that Disney has as back grounds and the characters
were moving across in front of it , but in my case it wasn't in sync and made me dizzy and nauseated because
near objects were in place but the background behind them was bouncing around ... he said I watched
to much TV... I don't watch much but was trying to put it to him in a way that a person without the problem
would understand

I thought I had a question or two but I am just venting and worrying ... and need to go to bed ...

have my own appointment and then a surgical consult with my 9 year old's plastic surgeon... she has a lymphatic
malformation in her mouth and has had surgery 4 times since kindergarten and looks like she will have more for
Christmas break... I worry about her but she acts like it is no big deal... dealing with it since birth she is used
to it ... I had 40 some odd years without AN and kinda liked life better without it ... I wish I had the ability
that she does to roll with the punches and not fight against what is ...


Wish us both luck tomorrow... hopefully will leave Nashville in time to swing my the Galleria Mall and do a little
Christmas Shopping or at least grab a bite to eat ... squeeze a bit of normalcy into the day

and Thanks for being here... this place is a life saver

Omaschwannoma:
Sounds very similar to what I went through for three years after my surgery before I went back to my original surgeon, Dr. Antonelli with complaint of oscillopsia!  The other "specialists" in my town discounted me, yelled at me, and pretty much made me feel hopeless.

Keep searching dear, what you describe is not normal, should not be happening and don't let it go as you will be in my boat with the balance not coming back to near 100% due to too long of a wait/diagnosis. 

IMO, sounds like you have something going on with the other vestibular nerve.  Hope you get some help. 

My thoughts are with you and your daughter.

wendysig:
Soundy,
It sounds like you are as stressed as it is possible to get -- it's no wonder you're not sleeping.  Having to deal with your problems and your daughter's too puts a lot on your plate.   I understand how coming here at all hours makes you feel at least a little better even if it is only from being able to vent.  That is something we all need to do from time to time.  I can understand your anxiety over the new doc too, especially considering what a jerk your last docor was.  Hopefully your new doc will be much more compasisonate and sympathetic that the last one and be abel to give you some answers.   Doing some Christmas shopping mght be just the thing to lift your spirits a little.   Please keep us posted and remember to breathe!

Best wishes,
Wendy

lori67:
Soundy,

Wish I knew you were headed my way.  We could have met for some lunch and some Christmas shopping!  Hope you had a good trip (to the doctor and to the mall) and things went well!

Lori

Soundy:
Things went good yesterday...

First off Sarah is not going to have to have surgery... some of the excess lymphatic tissue had some
saliva ducts clogged ... it popped before we got to her doctor and drained .. she looked and felt better...
this  is a new thing ... looked no different from when it was overgrown tissued that had to be surgically
removed... and she got a prescription to suck on sour candy to stimulate her saliva glands and flush out
any more of the grainy lymphatic tissue still in the gland or ducts...

 this made me thing... I wonder if for those of us with dry mouth but some saliva if sucking sour candy
would help... got her some old fashion sour lemon drops and may try a couple to see what happens ...
won't hurt nothing to try it


With me have some answers but not a full picture of just what is going on... had several tests...air pressure in deaf
ear is low... and the fluid thought to be just an ear infection is actually nasal goo... I have had some allergy
issues going on and for what ever reason fluid is backing out of Eustachian tubes then out ear instead of draining
down like it should ...

Also suspects not enough cerebral fluid ...either it is not there or a leak somewhere... I am on a diuretic to keep
left kidney going ... have had surgery on it to open it up ...had an accident that damaged it and cause scarring that
blocks flow and it needs jump started to work... may be pulling too much fluid from system... will know if we have to
adjust that once all scan results are in... for now staying on it so kidney doesn't slow down on me ...tend to make
stones if I don't stay on meds...

they put a clip like a swimmer would use  on my nose and had me hold my breath and try to gently blow out my nose
and some air and fluid came out deaf ear.. air should move around there some to keep air pressure in ear structure equalized
but not as much as is going on and stuff isn't suppose to come up the tubes... he is worried that I may be getting fluid
and or air (or as he called it) foreign contaminates in my skull... this can't be good ...

Also the patch of thickened skin in ear canal that old doctor removed in April has grown back... it is not infection or
tumor or cystic in structure according to labs ...just thickened skin ... the didn't take it out ... I have a small area in hearing
ear too... may be related to hyped up immune system due to lupus...stress aggravates lupus and have had thicken
scaly patches on my arms and legs from it at times ... good thing is the $45 tube of steroid creme I got two weeks
ago for a patch of scaly skin on my leg   is what he was going to give me to swab into my ears , so I didn't have to
buy anymore ...had  a mosquito bite me just above ankle and  after 2 month it had not healed and was scaly
and had lumps under the skin

Only a 1% increase in hearing loss in hearing ear ... which with all going on that isn't much and may not be any ...may
be better after as the tech put it ...the crisis is over

All this can and probably is contributing to balance issues... numbness to face and scalp could be swelling or
entrapped nerves ... feel better that he found things worthy of further investigation and that it is not all in my
head ( even though it is  :D )

Verdict... have to have CAT scan of temporal bones and two different MRIs on December 1st... one MRI of brain and
the other of neck and upper spine...the old doctor ran post op MRIs without contrast and the new said they should
have been with contrast and be more detailed...

That all said I feel about 90% better after seeing the new doctor and his willingness to work with me and look
 for answers instead of telling me to let things work themselves out with time

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