New Addition

Here is our newest addition.

Bentley 7 month old mix

We saved him from going
to the pound.

I think he is added to my basket
of tools in helping me cope
with things!

Otherwise, no changes.

Laugh & Cry at Blog :-)

Had another newly diagnosed Acoustic Neuroma person send me a message in regards to the info. on my blog from when it started and thanking me for good information.    Anyways, that got me to come back and read it 'again' (which has been awhile) from the beginning......I've had to laugh & cry.

My husband is one of the greatest men on earth.  He has so much common sense and so many skills and SO much energy it makes me jealous some times.  BUT, I have always said he is not one who is into the electronics, etc. like computers, cell phones, not even a TV remote :-)     Reading back over some of his posts from when I first had surgery 6 months ago make me laugh.    I can just invision him sitting in the waiting area or by my bedside taking forever trying to figure this thing out.    Wish I would have been more with it because it would be a SUPER RARE sight to even see him sit still long enough to 'battle' it.   Of course we were 3 1/2hrs away from home, so not much better to do.   

The crying came along when reading all the comments made by so many all throughout the U.S.     Good tears, so heartfelt.  It is so great remembering how many people had my family and health care providers in their thoughts & prayers........THANKS AGAIN!!!

Cranial Therapy

Well I started physical therapy again yesterday.   This time is more of a focus in what is called Cranial Therapy and the neck area.    The pains that really flared about 5 weeks ago had gotten much better with strong meds, but still tend to come & go.   My doctor recommended a different therapy & different place.      The therapist told me I may end up not feeling good awhile after the treatment.   Sure enough, the treatment felt great and must have released some of those good endorphines for awhile, but last night the pain & pressure all flared big time.    Now today it has been so bad I didn't feel like picking up my head...it just pulsed in pain & pressure.   Back to the meds and rotate heat & ice.   (it should get better with treatments)

Odd thing is the strong pain medicine I am on called Dilauhdid (generic) makes my tinnitus (ringing) WAY less, almost non exsistent.   I find it interesting.   Problem is, that is NOT a medicine to be on unless absolutely needed.   It is a major drug, stronger than morphine.   Such a bummer, why can't something like Tylenol just help like that!

BAROMETRIC PRESSURE:
     Well, I am now quite a believer that my brain inflammation is also affected when the weather is changing.   I have read lots about it, and had doctors tell me yes, for sure.   It is basically referred to like someone with arthritis.....they tend to ache more when the weather is changing, or a storm is coming.   WELL, that is me too.    Supposedly there is a storm coming tomorrow and for me that creates the pressure in my head verses the pain in my skull base & neck.   Yeah, maybe confusing, but at least I am finally understanding it all.    Problem is I haven't found how to help relieve the pressure type pain......any ideas?   

Many ask if the inflammation & pressure will go away.   I have been told it should, but due to the problems I had with my brain right after surgery it can take a long time for the brain & nerves to heal.  Plus there is no promises because of my secondary condition of Chiari Malformation.      PATIENCE, I guess that is the only word I can think of.

Thanks again to everyone for your continual support.    This journey has been crazy, and the doctors have been telling me to give it at least a year & hopefully things will be much better.   So, patience for sure (some days much better than others)

Sorry if I haven't returned e-mails or phone calls or messages right away, please don't give up......I'm just still on the emotional rollercoaster with all of this too!

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).  

Did steroid help????

The steroid was just a pac, so that means lots the 1st day, then each day less.   After about 24 hours I could for sure tell it was helping a lot with the "internal" cranial pressure I was having and some on the "external....face, ear, muscle, etc.".     I felt really good for about 2 days.   It helped with making it through my grandmothers funeral stuff, but I think maybe I over did it those days too.   I felt terrible over the weekend.  

I'm on my last day of the pac and all of the external pressure and numbness and pain is strong.   Not sure where to turn now, but have an appointment with my local ENT a week from Friday.   It almost feels like I have a major ear infection and suddenly the tinnitus (ringing noises) have gotten worse.   Some say it has to do with the weather changing.....back to cold and snow :-(      

Dizzyness wise, I'm pretty o.k. unless I over do it or move too fast.    I am driving more comfortably now, so I don't feel like I have to rely on someone else and that I'm stuck home.

Going out into public places, still not easiest & fun.   The stimulation on my brain due to the hearing loss is crazy!   Unexplainable actually (unless you've been there of course)!      NOT the same a those who go deaf slowly!!!   Your brain has some fast readjusting to do, in addition to trying to heal from the surgery, etc.

I guess I'm only 11 weeks and really not sure if it's too bad.   Just NOT what I expected, of course :-)

Back on steroids

Well, back on steroids.   The issues I mentioned on last post were not getting better.  I got my appointment rescheduled in Detroit this Friday.   My grandma ended up passing away and funeral is Friday.   She just found out a little over a month ago she had Lymphoma cancer and it was pretty much all over.   She was taken care of with the help of hospice and went into a sleep for almost 4 days before passing.  I am so glad she didn't have to suffer a long term of cancer pain.    Due to her funeral I had to cancel appointment on Friday, but was also nervous of how terrible I have felt on & off.   LUCKILY my neruotlogist from Detroit called me back.  He was VERY kind and decided to go ahead and start a steroid.   If I have no change for the better in a week, I need to get right in to see him, but if (and I pray) it is better, I should wait until the steroid is out of the system again and see how things go before returning.    That is the difficulty with having the specialist far away, you can just get in easy.

Of course, my luck is that the steroid is the same one I was on at the time after my surgery that I had an allergic reaction to a medication.  I was also on a pain medicine that the doctor and pharmacist said was more likely the cause of the rash..   But, I had to switch up both medicines anyways.   SO, hopefully it wasn't the Medrol steroid I was allergic to.  Now I will know....

Thanks again for all of the emails, comments, cards, and calls I have gotten over this long time.  

Not great update

I've had plenty people say they've checked the blog and not seen much and wonder.

Well, I'm bad, sorry.

My update isn't actually as good as some.   The swelling/fullness/puffiness in the entire side of my surgery side is REALLY getting to me.   Enough that I've scheduled an appointment with the neurotologist.   Seems like it is getting worse everyday and it worries me because of the additional swelling I had in my brain after surgery, plus they were thinking I had a mastoid infection...possibly, and it almost feels like the facial paralysis is coming back.  Just odd.       Yeah, I'm only 9 weeks out, but I have found all these symptoms started getting worse after all the steroids, pain meds, and the antibiotic I was on all wore off.    

When it comes to the brain, and all those nerves that these surgeries can effect, etc. it does worry me more.   I literally get an actual swelling that runs down the side of my face from my cheek bone to up above my ear and a ways into the middle of the incision area.  It is about 2" thick in width when it does it.   It throws my speech off some at that time too, and increases the fullness and pressure in my head.   Makes my ear inside painful.     I have been told I'd take longer for healing, but I've been doing nothing to overdo it, etc.  

Good news is the only time I really notice the tinnitus is when that swelling/fullness hits it tends to get high.  Sometimes I notice a little when it is totally quiet.      Still doing rehab for my neck and back and that helps greatly.   I don't use prescription pain meds for weeks now and usually o.k. with over the counter if needed (no med helps with the fullness/pressure/swelling pain though).    Rehab also helped my balance a lot too.   That does go off though with those other symptoms too.   

Mentally not always in the greatest place.  I honestly thought I was gonna be one of those surgeries that worked out just fine and had my hearing, etc.   WRONG, way off.   Oh well, dealing with it as I can.  

I think Trenton is having the hardest time with it because he wants me back volunteering at school.   I told him I'm not used to the deafness on one side yet, and those other symptoms hit witout warning, so not a good idea.   It's hard enough being around more than one person, I can't understand what's being said, etc.  Plus if the noises get too loud it makes me sick feeling.

As for driving, thanks to the darling snow and the fact I'm not a good winter driver AND these symptoms flaring whenever, I haven't even attempted it.   That is working out o.k. though, things work out just fine.

Hopefully that gives a few updates.    

Thanks for thinking of me and the continuing prayers, etc.
Denise

Latest

Well, I got in to see an Eye specialist Monday, my 8 week mark. My paralysis is about 90% back to normal only because my left eye is off some still. It will close, but slower, so it is also drier and the tear duct don't work right. He put a plug in and that has helped a lot more so far to keep the moisture in my eye. He said after running a bunch of tests (or whatever...they hurt my eye), that my left eye was wiggly. He said he was familiar with the type of surgery, etc. and with my delayed paralysis and additional brain swelling, it will for sure take things longer to heal. Even thought I do the correct exercises for them each day, ugh! He told me due to this I should hold off driving.....mostly too because it is so snowy and ucky here. Told me also to wear my polarized sunglasses in the day if I go out, will help my eyes too.

Still more, but I can only do a bit at a time!!

Here is our snow....lovely living close to Lake Michigan and the lake effects. This is of our big deck around the pool.....I think the railings are about 42"..?? (yeah, where's the pool!)