Some answers to some pain???

Well, as many of you know I had some ER visits and doctor appointments in the past weeks.   Possibly my head is spinning even more, or at least one doctor gave me some 'possible' answers/opinions.   I honestly don't even know where to start, but here we go:

It has been confirmed for sure that I have this condition called (Kee-AR-ee) Chiari I Malformation (some refer to it as Arnold Chiari).    {I'll try to give a simple explanation}   The lower part of the base of your brain descends into the spinal canal which is down through the hole in the base of the brain.  Around that area is what is called the cerobrospinal fluid (CSF), your brainstem, and all your cranial nerves.   This malformation can cause compression on this area, and possibly disruption to the CSF flow.    **these are possiblities and depending on the degree as to how much the brain is descending can create symptoms, and sometimes people have this and no symptoms....there are also additional issues that can come along with this malformation, but I don't currently have those, so enough.

WELL, the problem is that my MRI's show this condition, BUT also supposedly show some edema, inflammation (and some other term??) in where my surgical area was for my tumor removal.    The neurosurgeon yesterday said there is no room in peoples heads for our brains to expand and that is why any type of inflammation, etc can cause pressure, pain, problems anywhere throughout the brain & head.   UGH!!!!   Yes, it makes sense!    He said though that it is to hard to tell for sure what is causing my symptoms and I need to refer back to my neurotologist who did my tumor removal 1st, AND to give it time for things in my brain to settle down .  He said give it at least a year....you went through some major surgery and had some big complications post surgery.   I said that I WAS doing good, but suddenly had this major pain/pressure flare up a month ago.   He said that may happen due to my situation, but we could tell I have been getting better again, so recouping does work.  

The neurosurgeon I seen last week only seemed to look at the Chiari, and didn't mention anything about my previous surgical area (and he assisted on that tumor removal).  I gave up in his office after he kept repeating the same thing, etc and I was upset, crying and just wanted to leave, so didn't get to asking more questions.   Since he only focused on that one area, his response was:   There is no way this Chiari is causing your symptoms because of the way he viewed 1 MRI.   Then he said I just have headaches, but not sure what kind and said Lyrica would be good for that.   I even said, "NO they are not just headaches".   I asked why my balance got so bad again and my tinnitus showed up 3 months post surgery.  Then he goes on to talk about balance will never be good, and there was another surgical option for that and tinnitus, that named some other option (can't even remember I was so flustered).   I was done. 

Now yesterdays neurosurgeon said "Yes, definately this Chiari can be causing all your symptoms", BUT there is the previous surgical issue.   O.K. now that makes more sense (now that I know there is more going on in there).   So I asked if I didn't have stuff from the tumor surgery, what are the options for the Chiari?   His take on it was that he don't believe in physical therapy, etc.   The only way to take care of it was surgery.   Well, I know there is no returning it to normal without surgery, BUT wouldn't therapy help with the pressure and pain some???   He said I can do what I want and do discuss it with my internest.  {don't matter because there is NO WAY I could go through another major brain surgery for who knows how long...NO WAY!!!}

So, now I send MRI & CT reports and CD's back to Detroit, follow up to see what internest says next week, and ya know.......depending on what neurotologist says from Detroit....may be getting another opinion too.   UGH, UGH, UGH!!!     

I have been feeling more on the up the past week and off some major pain meds I've been on since my ER trips, so I am recouping by doing nothing and taking it easy.     But I'm SCARED, to say the least.   Daily dealing with something of pain or pressure, but how much and what flares it can change in an instant.     Basically....it all just stinks!  (don't know what else to say)  

So, that is once again my update.   Always lengthy I know.   We'll just see what next week has to bring.   Maybe some better answers??

Thanks for reading 'listening'
Denise

Read Comment

I made a little comment on my previous post due to the number of emails, etc. I have gotten from that post.

Sorry, no posts lately

I just want to let those of you know who check this often SORRY, I haven't posted because I have nothing positve to post lately.   Things have not been good for me and our poor household is going through a rough time right now.

If you chose to know more, feel free to call anytime.....I am home most all the time....I am currently very limited.  

If you pray our just want to send thoughts:   you can just add us to the list for strength and well being.

Thank you
Denise

St. Patricks picture

This is a project from from St. Patricks
last year we did with Trenton's class
at an assisted living elders home.

Not sure how enjoyed it the most, the
2nd graders or the elders.    Love
watching the communication and
fun between them!!!

March has been great so far here
 in Michigan.   Mid to upper 50's
today and we've had lots of sun.

I sure hope it stays!!!

Take care everyone!!

Weather changes hurting me???

Yep, weird title, but I am really, really starting to say the weather changes over the past 2 weeks have been affecting me.   I was doing GREAT for a full week.  Then, suddenly it's like someone has been using an ice pic and stabbing me in the ear.  My ear also feels very full and the tinnitus has gotten to the point where sometimes it seems severe. Hmmm

Then, I can almost wake up and almost nothing.   My mother in law actually mentioned something to do with the weather awhile back and I thought, yes it makes sense and seems to fit.  Then, my neurotologist told me it would probably play a big role for awhile too.  Now after reading lots on the forum and other websites, I'd have to say a change in the air pressure, etc can be a big source of my pain & tinnitus changes.   

Things sure have been crazy for the past 4 months, but yes MUCH better than 2 & 3 months ago.   It will take time, but mentally sometimes it is hard to believe.   If it weren't for the Acoustic Neuroma forum, I'd probably have gone more  off the crazy end at some point.   ALSO my husband of course {he tries very hard & deals with me the best he can}.   Other than that, sometimes I feel like I am alone.   I am home by myself a lot, but seems like the phone never rings and due to not working, etc. my social life is down hill.   Dealing with crowds/social settings I have to take day by day.   Sometimes 1/2 of my head feels so swollen or stuffed and noises make me cringe, then others I feel ready to go.   I just don't get it...

Well, I think I am venting today, sorry.   We are having lots of sun which I love, but LOTS of mud and wet.   The sun makes me want summer and to be able to sit in the warmth and enjoy see how this SSD affects my love of hearing the outdoors.   SOON.....

Thanks for 'listening' :-)

2nd post today: Bone Conduction Sound Processors (BAHA & TransEar)

Well, I said I'd post a 2nd one today.  This has to do more with the hearing loss and options.     As you know by now, my hearing is gone on my tumor side, which is my LEFT side.    For my non AN family, it is called SSD (single sided deafness....the term for unilateral profound sensorineural hearing loss)  And, like I stole some of my info. from a fellow ANer's blog.....it is D E A F....that is the thing to stress, it is different than most people who are "hard of hearing".   I hear NOTHING from the deaf side, so talking louder doesn't help :-)    This also impairs the ability to tell where sound is coming from.

There are many handicaps that come along with SSD that most people aren't aware of.  They include many life changes.  Things that are uncomfortable are usually noisy settings, like social gatherings, family get togethers, meetings, stores, restaurants, driving (car noises, etc.), even not being able to be completely aware of your surrounding based on noise if biking, walking, etc.

Being only 3 months out from surgery and my brain has to compensate for every noise in one side, it puts pressure on the brain as to how to deal with all the extra noises.   That can cause brain fatigue and physical fatigue.  Supposedly with time the brains hypersensitivity in this matter should diminish some.   As for now, listening when only one person at a time is easy.   BUT if multiple people are talking, or there are loud noises like fans, appliances, TV, music, etc. in the background....the brain has a hard time deciding which noise to accept and respond to.

Well, hopefully that made sense.  Now, on with a few options.   There are limited options for those who have became deaf due to this type of tumor or surgery.   It is called Bone Conduction.  Some refer to it almost like a prosthetic verses a basic hearing aid.  Basic hearing aids usually work with the Air conduction in the middle ear.   For my situation, that isn't an option because the middle ear (or ear nerve) has been damaged.  BUT there is an option of using the skull bone for vibration, conduction.   (of course, I never knew there were 2 ways we received sound....feel like I'm back in college with all this research)

The one option I am really checking into is called BAHA (bone anchored hearing aid).  It does require a surgery (usually outpatient) to implant a small titanium implant (abutment) behind your deaf ear.  Then a sound processor would be later attached to it.  Then sound is transferred through the bone of the skull, stimulating the cochlea of the good hearing ear.    This doesn't actually make your ear work, but the processor picks up the sound vibrations, then the implant transfers the sound vibrations to the cochlea of good ear.  The sound converts to signals sending them to the brain.   WHEW, amazing how the brain works!!   Don't even know if I completely explained it right, but it sure sounds amazing.   

The other option is the TRANAEAR, which is where the ear canal is deeply molded so the instrument can work with bone conduction.   This seems to be newer and I'm having a hard time getting good resources for this one.  

I've spoke to my regular ENT, my Neurotologist and 2 Audiologist and they say due to my young age I should benefit well from the BAHA.   I remember not even thinking of it a month ago.  But, since I MUST be feeling better, I decided to get the ball rolling to even see if my insurance would cover it or anything (luckily my doctor and audiologist that specialize in them will do all the work for me.....they know how to 'term' things right, like I mentioned before "a prosthectic" verses and aid.  Interesting to say the least, but just like a leg that is totally gone and you get a prosthetic, I have a hearing device/??? that is totally gone.  Makes sense to me.

Now, I am not saying for sure I'm even doing anything.  Takes a good month or more to hear from insurance.    In the mean time, I am trying to get myself slowly into situations to try to get my brain used to this new way of life.   Taking it slowly is the best way to do it, and results in less set backs later.

Well, that is enough for today!
PLEASE, fellow ANer's:   if you have any good info., comment or send me an e-mail.  I

If you think I'm crazy....say so. :-)    Really don't know what I'm doing for now....just been some major changes in my life.   I MISS my social 'calling' :-)

3 Months Post Op

February 9th, 2010 was my actual 3 month post surgical date.   I find I haven't been as good at updating the blog...............which to me means things are getting better for sure!

When I look back, or hear others tell me stories of what they thought and imagined when reading my blog over the 1st 2 months, I for sure feel blessed and have came a LONG way!    It's so crazy how at certain points you can think "is it ever gonna get better?"

I had an appointment with my Neurotologist in Detroit Monday.   He said for all I've been through, my healing process is actually great.   He told me (same as any doctor I've seen) that due to the extra brain swelling I got after surgery and the delayed facial paralysis, that would all increase my healing time as to feeling more like normal.   He thinks be 6 months most of the little things like my odd balance issues and periodic facial fullness feeling should be pretty good.    Although, after having major surgery like this and involving the brain, things can take up to about a year.

A lot of things are actually where your brain has to compensate for things.   As for me, I have lost the hearing on my left side, and I have tinnitus (ringing, noises) in that side some.   When something happens so suddenly to one side of the brain, the other works so hard to compensate.  This also causes the body and brain to fatigue very easily.  (for sure I have had that)

Right now for me I would have to say the hardest thing is being in social settings or noisy situations.   I am trying to get myself back into things, but taking it slowly  to see how it goes.   I'm needing to put myself into some of these situations and hopefully that will help my brain get used to those things.  (I honestly am not sure how all that works).   I have been back in church for the past 3 Sundays.  The first was terrible, but I wasn't feeling real great for the 2 days before.   The past 2 weeks have been good, but it seemed really loud so I wore an ear plug just slightly in my good ear and it helped limit some of the noise.  I could hear everything just fine.....just not super loud and straining on my brain.   It was nice.

I also took the kids to a get together of the youths (and families) from church.  A cardboard sled race.   It felt GREAT to be comfortable enough to want to go.   My balance was weird, but standing in packs of snow didn't help.  My wonderful husband was great at lending himself for me to hold onto.  :-)  

I am going to post another post today with hopefully getting response or emails from other AN people that have some of the same issues.

BUT, I want to once again THANK everyone for all of your support on behalf of myself and my family.   Prayers are a wonderful thing and would actually appreciate the continuing of them.   Still have struggles, but it seems like each week things are better.  Even enough to lead me to decisions I said NO WAY to just weeks ago (in my next post).