What is SSCD (Superior Semi-Circular Canal Dehiscence) or Third Window Syndrome

Huh?  Yeah.  That’s what I thought.  A month ago I finally said I was tired of the sound of hearing underwater in my right ear.  Admittedly, the weird sounds are in both ears.  But, the right ear feels and hears like an underwater reverberation.  I had no doubt no one else could hear what I was hearing.

Friends would tell me that I should read this book or that book.  At first, about 5 years ago, I stopped reading.  Up until then, I was a fairly avid reader.  I would go through spurts where I would almost eat up books.  I liked a wide variety of subjects and authors.  I loved Vincent Bugliosi and Isaac Asimov, Robert A. Heinlein, Ursula Le Guin, National Geographic, Discover Magazine, and on and on.

All that just stopped.  Dead stop.  I didn’t tell people for another three years.  But, I felt that my friends must be wondering what would keep me from reading.  Unless, I was blind.  Well, that clearly was not the problem.  I wondered if they thought maybe I was illiterate.  I know how ridiculous that kind of thinking was.  Yet, there it was inside my head.  Along with all the noises inside my head that had become normal.  You imagine how you would have covered your inability to read.

About thirteen years ago I felt that the underwater sensation had gone on long enough.  So, I finally went to an Otolaryngologist aka ENT aka Ear, Nose, and Throat doctor.  I explained my symptoms.  He looked into my ears and said that my eustachian tubes had collapsed.  He explained that putting tubes (like in kids with lots of ear infections get.  But, neither myself nor my kids needed them), he explained in clear detail the process.  The idea of him cutting into my eardrum SCARED THE SHIT OUT OF ME!

Posted in Home | Leave a comment

Physical Therapy (PT)

Physical Torturers.  That is what my friends and I called our PT’s in the eighth grade.  They were wonderful women in uniforms who worked on us in their very own torture chamber.  Their chamber had to be passed on our way into school every morning and the way out and to the lunch room.  It loomed large in our lives.  This was no “Nurse” office like in regular schools.  No, this was a “Special” School.  We were special for many reasons.  Each one of us had a different disabling condition or deformity.

Our torturers were hell-bent on breaking up scar tissue and stretching muscles and tendons shortened by misuse or disuse by forcing our limbs in directions recent surgeries or other congenital disabilities and deformations which, for me was the “new normal.”

I remember laying on a vinyl covered wooden stilted and crossbar strutted bed.  My torturer at my side bending my knee toward my chin and the hot liquid running out of my wide open mouth.  Gasping for air my new friend, PAIN was taking away from me every other second.  Or by stretching my legs toward a ceiling that did not want them either.  Pain was PAIN.  Yet, pain was a positive thing.  As long as not pushed too far.  Once every day of the school week.  Sometimes twice a day.

PT today is something entirely different.  Not painful this time.  Difficult.  I am trying to learn how to balance my own body and how to focus my eyes without getting nauseatingly dizzy and falling down.  At this point, I am learning to control the 500 pound lead weight which, has fallen in LOVE with Gravity.  Gravity has an iron hold on me.  Gravity likes to play games with me by yanking with a singular rough and determined demand that my head and torso fall hard to my right and (so far) smashing me into my raised hospital bed or being felled backward on my bed like a newly chopped tree.  Something gratefully has NOT attacked me on the hard vinyl covered concrete floor.

The “Special” School today is called a Skilled Nursing Facility for my rehabilitation.  I was so exhausted yesterday (Wednesday March 8) I took a vewwy long nap.  I have felt all energy taken away from me EVERY day since my surgery (SSCD) REMOVED one sixth of my vestibular or balance system.  This has given Gravity (it is now a pro-noun due to its specific personal attachment to me. We are, in fact, on first name basis.) a new and nearly unbreakable friendship. PT is teaching my body how to work with Gravity instead of my giving into an unhealthy co-dependent relationship.  Ah, THAT is the therapy aspect.

Between yesterday and the early hours of today I have had a couple of realizations.  One I discovered yesterday in PT in the bathroom.  Forcing me to walk and talk at the same time tends to create a violent discussion with my bowels.  I was sitting on the one throne I cannot escape when I had a “wonder”.  I wondered if part of the dizziness I experience when there is too much peripheral distraction (or movement or pattern or people walking by or my attention being drawn to a color change or sound or well, shit I AM ADD) to either side of me is caused or exacerbated by one eye or the other.  My eyes will dart to that disturbance and I immediately lose all sense of balance.  At least, my knees and hips remain capably beneath me.  As long as I have my trusty walker in front of me with my hands gripping hard to the padded rails and a spotter behind me to give me a slight push back to up.

To find out while in a safe seated position with a grab bar to my left and right and my walker in front of me I put one hand over my right eye and quickly moved my head together with my left eye to the left and quickly t my right.  THAT went ok.  I was able to quickly focus on the items I locked onto in either direction.  Hmmm.  I put one hand over my left eye this time.  I swiveled my head keeping my eyes on the two targets at ten and two on the clock face and unhesitatingly became dizzy and unable to focus on either.  OKAY then.  This makes perfect sense since the deficit in my vestibular system is on my right side.

This morning I told my PT and OT (Occupational Therapist) the results of my scientific study.  They both made the “well, that makes sense” face.  They were already aware of this because of the copious medical charts they had to read through before meeting me.  Silly wabbit.  Apparently, it was just news to me alone.  After all, the Visual Ocular Reflex (VOR) exercises were designed to help just this problem.

Now that I am on board with the VOR I know which eye specifically is the problem they designed the VOR around.  One more thing I did not know.  As I think over this and over the balance and proprioception issues I have had for many years my new realization puts a lot of this into a new perspective.

The holes in my Superior Semi-Circular CanalS have been in existence and growing for well over a decade.  The symptoms began infinitesimally small.  Growing ever larger in impact one my whole system and physically enlarging the hole.  Ergo, I am a bigger klutz than I used to be.  I just accepted my klutziness as “just me.”  Until, PT for the proprioception problem causing my internal sensation and commitment that my right leg was longer than my left when, in fact, they are only incrementally different in length.  I now have another LEGIT proprioception problem due to the SSCD.

I have seen/HEARD improvements.  My breath is not heard in my head now.  Sounds are not so deeply affecting.  Though, being totally off balance, for now, is pretty difficult.  I am improving.  Four days ago I could only walk 260 steps like a drunken bobble head.  Today I walked over 600 steps.  Still, entirely like a drunken bobble head.  This is progress!

 

Posted in Home | 1 Comment

CULTURE SHOCK or HOSPITAL to SKILLED NURSING FACILITY (SNF)

Culture Shock!

Pretty severe.  The hospital was so clean and bright and caring and organized and clean and DELICIOUS food and an easy and effective method allowing the patient to choose the right foods for a diabetic.

Right before the surgery my Blood Glucose (BG) tested by a test called an A1C.  The short version is this test somehow measures the average BG in the blood over a three-month period.  Which, is a lot easier than testing it every month then, averaging out the value to arrive at a number.  Who designs these tests and how to do them?  Do the people who research this stuff have a mean streak?  Telling me I have a problem I did not even know of or want to know was not a very nice thing to do.  Even if it turns out to be a life saver.   Imagine my four-year-old self feet firmly apart and hands planted on my waist with a scowl on my face.

I have been “pre-Diabetic” for several years.  I admit I eat too many carbohydrates (sugar).  Sugar and fats are so GOOD even if slightly too much can be bad for some of us. (Still pouting.)  Preparing for the surgery required a full “work up” to see what other problems or issues might impact the surgery itself and healing.

I don’t know if it was stress or what.  But, my A1C was scary high.  Surgery delaying high.  I worked the week prior to surgery with an Endocrinologist to get the BG down.  Which, worked.

I am five days post-surgery.  I was transferred into a Skilled Nursing Facility (SNF).  Not the top choice.  But, I had been told it was a good place.  WRONG!!!!  I was brought over from the hospital to the SNF.  The SNF was aware I was coming in sometime Wednesday.  A bed was waiting for me Thursday.  The ride over in a wheel chair transport was difficult.  Watching the road as we were driving triggered vertigo in a big way.  I breathed hard and deep hoping to prevent giving into the nausea in my stomach. [Note:  The following sentence was written in a state of exhaustion before, I realized how bad I felt]  I Îfdv
HB hvgERSAW#DRFG GHDSA

The food in here is made for those with no taste, nor taste buds.  I have requested no “tomato products.”  Unless, a tomato is hidden in a Five Guys Cheeseburger (or other equally good burger) I really do not like tomatoes.  However, in this SNF, Jane, the Registered Dietician, tried to convince me that the reason I get tomatoes on EVERY SALAD EVERY DAY is because, the kitchen staff may not consider a “tomato” as a “tomato product.”  HUH???

Apparently, she mistook my incredulity as acceptance.  She was wrong and I was very clear in telling her so.  The kitchen is run by a Dietician Tech.  Supposedly, they have a “Chef” not just a “Cook”.  I do not believe that either.  Proof is in the over cooked tasteless mush we are fed.

I asked Jane (real name. I refuse to use a false name in complicity to cover up the problems.) if it were possible to “Blanch” (not Golden Girl, Blanche Devereaux the self-aware openly sexual woman) vegetables so they are not mushy.  Jane said there are patients that have trouble swallowing so overcooking helps them.  As does, she says, the gravy on nearly everything they serve.  Except for the “scrambled” baked eggs.  Which, are actually acceptable.  Good?  No.  But, good enough.

If the dietary team here considers itself acceptable they are WRONG!

Breakfast went fine.  So little to look forward to.  Lunch was so-so and dinner a disaster.  Though, Jane did come back to visit me this afternoon and I was able to show her the problem.  A shitty kitchen.

Most of the staff are pretty good to wonderful.  That is HUGE.  There is no such thing as modesty in a hospital or a skilled nursing facility.  Just spoke to an RN who confirmed that “half this floor are diabetic.”  She agreed that there is “no Diabetic Diet here.”  I knew that.  I told her what Jane had said about tomatoes and she was incredulous.  We laughed.  You know one of those I cannot believe this insanity and yet, here I am in the middle of it becoming more insane from it situations.  We both shook our heads and harrumphed as she left offering me any help I might need.

My BCG after refusing the “Salmon Noodle Casserole” and the two so-called “fruit juices” which, are not allowed on my food trays was 98.  That was because, I ordered a cheese tray and ate the Chevre a friend had brought me several days ago.  This is when my blood sugars are good.

Hell, even I do not believe I can eat better in here feeding myself than I can at home.

Posted in Disease, Home | Tagged , , , , , | 1 Comment

Day 3 Post-SSCD Surgery

Thursday.  Surgery was Monday.  I am in very little pain.  I am still taking minimal pain meds to insure the pain stays at a low-to-zero pain.  I have found out that I cannot open my mouth to allow a large bite of salad.  I cannot turn my head too far to the right or left which, still leaves me with quite a large range of motion considering these limitations.

I spoke to my doctor about the limitations and pains regarding the right side of my head.  My surgeon pointed out that the large chewing muscle, the Transmastoid, was pulled, held out-of-the-way and he had to make a “small cut” to it.  No wonder it hurts in certain circumstances.  I am grateful I am able to move at all considering how intrusive the surgery was.

I feel I am getting incredible care from all hospital staff.  The Case Manager began looking into finding me a placement into a Skilled Nursing Facility.  Apparently, my first choice is unavailable.  Frowny face.  They are still looking into the next option.  I have no clue when I could find out what is happening and where I am going.  Lack of solid information and timing is, I believe, understandable.  That was my way of validating my anxiety.

I have found out I am not allowed, for good reason, to sneeze, cough, blow my nose, bend over, lift.  I found out the hard way about not blowing my nose.  Because, I had to yesterday afternoon.  BLOWING was an automatic response to a full nose from having cried for a short time.

BIG MISTAKE!  I was immediately sorry I had and scared about the repercussion of negative impact on the surgical procedure.  I was absolutely certain the right side of my head had just split apart and was flying at a massive speed across the room.  I called in a nurse to take a look into my ear.  Right, like she could see through my eardrum into the very inner workings of my ear where the surgery site is.  She was very kind in humoring me and said she found nothing.  Which, did make me feel better

I reported this event to my surgeon later that day.  He strongly reiterated the importance of NOT doing that again.  No more crying for me, then.  I don’t know about you but, when I cry my nose flows like a lake having just breached the dam.  It ain’t pretty like just dabbing a small tear at the corner of an eye. I am a gusher.

I do still hear my heartbeat in my ear.  It is a lot like a doppler effect.  The sound is cyclically louder then, quieter as if it were moving away from me.  I am not sure this particular issue is better or worse than before.  Hmm.

My blood glucose levels are reducing.  Whew.  Apparently, taking steroids commonly raises blood glucose levels requiring insulin shots.  My fingers are all dotted with little red marks from the many, many finger pricks for blood testing over these few days.  I do like the fact that diabetes insulin needles are very fine and are nearly imperceptible.  Especially, since I am getting them three to four times a day.  As the level of steroids are being reduced so are the blood glucose numbers reducing.  Monday through Wednesday morning the BCG numbers hit 385 then, in the high 200’s.  This morning the BCG was a completely normal 120.  Still getting intermediate acting insulin as long as I am still on the steroids.  But, I am being tapered down from the higher dosages to nothing by Saturday.

I am still taking a minimum dose of Oxycontin to make sure I do not have pain break through.  I will be glad to feel my outer ear again at some point.  Maybe the doppler scream will stop soon, as well.  Until, then, here I am.

Surprised how tired writing this has made me.  Hmmm, maybe it has something to do with the drugs.

Posted in Balance Imbalance, Disease, Medical, Personal, SSCD, Superior Semi-Circular Canal Dehisence | Tagged , , | 3 Comments

Post-Operation SSCD +

Sunday my friend, E, arranged a pre-operation luncheon for me with a large group of friends.  At first, I thought maybe half a dozen people, at most, would show up.  E picked me up to take me to the luncheon.  On the way we were talking about who was invited.  She told me that TWENTY RSVP’d.  TWENTY???  Really, did you say TWENTY?  At this point I am crying.  No kleenex, no napkins, no paper towels.  Whose cars do not have ANY of these things?   Especially, since she has two young grandsons who are normally messy.   I must say that I tried not to sniff the snot back into my nose.  Because, it makes me profoundly dizzy.  But, I HAD to.

I was truly shocked.  I had no idea so many people cared about me.  I can be a very prickly and frustrating person.  I know this about myself.  Yet, I cannot seem to be completely non-prickly and frustrating.  I believe I am better than years past.  I was SO glad to see everyone there.  It was heartwarming.  I was very happy these special people showed up to express their support of me.  For example, one man in attendance had jumped to help me out on the last day of my 30th round of radiation in 2013 when my son called me tearful and upset that my car would not run.  I cannot recall but, I think he had been hit from behind.  I had a very short time to make my last appointment.  So called L’s house to ask L1 if she could drive me.  She was very sorry but, was already on her way to an appointment she could not miss.  She handed the phone to L2 who said he would, without hesitation, come and pick me up and drive me.  I know how much my son wanted to be there with me as he had been throughout that previous incredibly difficult period in my life.  It was L2 who came to both myself and my son’s rescue then, was there today, too.

So many of these people have been important to my life in one way or another over the past 6-ish years.  I suppose in many ways we have each been there for one another good and not-so-good.  A two way path of life.

Today is one day post-op.  According to the surgeon the surgery went well.  He drilled into my transmastoid.  It is a low part of the skull just behind the ear.  I am doing well.  The pain is minimal.  Mostly.  As long as I have minimal pain medications.  I still have tinnitus.  I hope it will ultimately go away.  There is no guarantee. I look forward to learning how to walk unaided again.  I need to learn how to negotiate stairs.  The up stairs and especially the down.

A cut was made behind my ear where the ear cup ends and the head begins.  It will be a scar that will be unseen by anyone who does not already know the situation.  Very little hair had to be shaved.  Even though, looking closely at the stitches today, my daughter did not even realize the hair had been shaved.  The doctor used the bone dust from drilling (too gross?) into the skull bone and cartilage and mixed it with some waxy substance to plug the hole.  They call it “Bone Pate‘”.  How tasty.  Then, he cut a little slice of cartilage from the inside of the same ear (the Tragus)  to use as “surfacing” over the ˆBone Pate to make a solid separation between the pate’ filled hole and the covering of the brain.  Weird.  So friggin’ weird. This human body.

My son arrived from out-of-state yesterday about 45 minutes prior to my going into the operating room.  Many thanks to E.  She drove me to the hospital to check in. She then, turned around to go to the airport to pick him up and take him to my house.  He put his stuff down, jumped into my car, and drove up to the hospital.  Only getting lost once.  It is a confusing set of multiple medical office buildings, institutes, children’s hospitals, and the main hospital creatively constructed one upon the other in a very confusing campus.  THEN, E RETURNED to the hosipal (purposely misspelled) to sit with my son through the surgery.  Another friend, EM, came up to sit with them throughout, as well.

My son told me this that next morning and I had no recollection.  He and E were able to talk with me in Recovery.  I have NO memory of it.  I was pretty funny.  At least, that is what I hear.

My daughter was not able to get here until, late the night of surgery.  That is because, the surgery was originally scheduled for Tuesday.  Rationally, she purchased her tickets to arrive Monday night in order to be with me Tuesday.  Neither of us imagined I would get a call after that moving my surgery one day earlier.  That being Monday.  AND her flight was delayed by a couple of hours.

The kids were both here the next morning.  Travel, time, and worry weary but, here with me all day.  I was teary.  Clearly, still drugged and a bit funny.  They went to dinner with friends of theirs.  They are trying to see as many as they can in the limited time they are here outside of keeping me company.

Posted in Home | Tagged , , , , , , | 6 Comments

If tRUMP GETS THE NUCLEAR CODES…

Does this mean he NUKE AMERICANS he does not like?   If so, say good-bye to the New York Times, Washington Post, AP, all REAL news agencies.

Surely, he would nuke Russia.  Well, no.  tRUMP would rather denigrate and ignore the USA Intelligence angencies in FAVOR OF PUTIN/RUSSIA.

I am about to throw up.

Posted in Home | Leave a comment

tRUMP is a Dangerous ASS! (Mike Pence, too)

I think the title is pretty self-explanatory.  However, if you need more let me add that the though of him being one of the most POWERFUL MEN IN THE WORLD is consistenly nauseating.

Nothing he says can be relied upon.  Because, everything that comes out of his mouth (interchangeable with his RUMP) he so easily contravenes with another statement on the same subject.  He is the biggest BULLY I have ever encountered.

I am confused how tRUMP

He claims he is a “germaphobe” therefore, Russia could not possibly have videoed him having a Golden Shower Party with hookers.  His claims as to why this is not possible is NOT that he LOVES his WIFE or has ANY ETHICS at all but, claims he is a “germaphobe”.  Right.  If that were true he wouldn’t have a looooonnnnggg history of “grabbing pussy” and kissing women he doesn’t even know and without their permission.  Yeah, you are a germaphobe of the least kind.

As to his claiming that he would not have done the whole hooker thing because, “you know” every hotel has cameras in “EVERY ROOM”.   THEN, EVERY ONE WHO HAS EVER STAYED AT ANY tRUMP PROPERTY CAN SUE HIM FOR INVASION OF PRIVACY.  He did just ADMIT TO INVASION OF PRIVACY IN ALL OF HIS HOTEL.  If and, I hope when, he gets sued for this he will have his own words as testimony against him.  (I can only hope.)

There are so many illegal and immoral actions and statements made by this Orange fake tanned white raccoon eyed weird mouthed megalomaniac tRUMP.  He refuses to live in the “PEOPLE’S HOUSE” THE WHITE HOUSE as a perfect way for him to hide even more of his business dealings.  He refuses to be transparent about anything.

tRUMP ran only to improve his business dealings and stuff his likely empty coffers.  What am I talking about?  Why his refusal to release his tax returns though, insisting it of others including, his own proposed Cabinet picks.

As taxpayers, INSIST tRUMP NOT COST THE USA TO HARDEN HIS PERSONAL HOME TO USE AS A SOLIDLY BLACKED OUT BUSINESS OFFICE!

There are so many reasons this ASS must NOT serve as POTUS.  Don’t think Mike Pence is any better.  Between the two of these men the hatered for womBen and people of color, children, and health care is frighteningly nauseating.

Posted in Home | Leave a comment