Tag: medical tests

The Ball’s Rolling now

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease6 Comments
Ball Rolling in Hole by W. Holcombe

Saw Dr. Kaylie on Tuesday.  I have an ear infection.  Again.  Who knows why.  He thinks the tube is beginning to irritate my ear because it’s trying to come out…and blah, blah, blah…I didn’t really listen to that part.  Partially because I couldn’t hear him, and partially because he started the sentence with, “I don’t know”  When a doctor says I don’t know…well, I have a hard enough time trying to hear the things they really do know about.  I let Stuart listen to the rest.  : )    However, he doesn’t think this infection has anything to do with my on going symptoms.

I started feeling like I was going to have a full blown, down on the floor, throwing up Meniere’s attack as we got to the clinic.  I’d already taken some meds before we left the house because I was feeling it a little bit.  So I took some more.  I did not want to fall out at Duke’s Clinics.  It’s hard enough in the privacy of your own home, but I just can’t imagine the horror if I fell down in the hall there writhing on the floor throwing up.  Ugh…just the thought.  I know, I was in a medical facility, and they would try to help as much as possible, but let’s face it, I would have been mortified.  So, I took more meds, and Stuart wheeled me in to see Dr. Kaylie.  When he saw me he looked so sad.  He’s such a sweet, compassionate, and unbelievably smart doctor, I just wanted to be able to get up and say, “don’t worry I’m fine, you fixed me all up.”  Of course, I couldn’t.  But I do believe that he and Dr. Gray will do everything they can to make it better.

He was very sympathetic, but I really need to see Dr. Gray.  He is treating my ear infection, but he can’t really do anything about the pressure problems.  I have to get it tested again!

Dr. Gray also called on Tuesday.  Her scheduler called the next day and I have an appointment on October 17th, unless she has a cancellation and they can get me in there sooner.  We really can’t move forward until we know if my pressure is high, like they suspect.

My symptoms aren’t classic for having high pressure, but I do have some.  However, I also have some of the symptoms for having low pressure.  It’s almost as if my pressure keeps randomly going up and down…but that can’t be happening all by it’s self…can it?  Guess I’ll find out.

In the mean time, I’m most comfortable in bed, in a reclining position.  I’ll try to go down stairs to just move around and get a different bit of scenery, but I don’t last long.  When the tinnitus gets too loud, I can’t stand any other noise.  I’m not as comfortable on the couch, and I’m not really walking all that great on my own.  I can usually get from the bed to the bathroom, but that’s only about 4 feet, then I can hold on to the walls/sink…  (plus I do have a walker right beside my bed to help if I need it.)  If I’m downstairs I have to use my walker or Stuart to get to the bathroom.  (Not all the time, but most of the time.)

It is driving me crazy that I can’t cook.  I love to cook, and with my food intolerances, it’s hard to cook for me, and even harder to get take-out.  So we’ve been eating a lot of the same things.  Easy things that my husband can cook.  I’m very grateful, but I miss my kitchen!

Oh, Stuart has discovered the slow cooker.  He made a delicious roast this week.  I was so proud of him.  he even put in a bunch of potatoes and shallots that came from our garden!  (we didn’t get much from the garden, but the things that grow underground did great.)  Growing organic vegetables is hard!  We learned a lot of what not to do…hopefully, we’ll do better next year.  Unfortunately, we’ll be missing the fall planting season since I’m stuck.  Being home bound sucks!

I am keeping up my spirits by drawing, and reading.

I don’t think I’ve mentioned it, but Stuart’s father is getting married!  November 5th is the big day.  I’m going to have a mother-in-law…wow!  (Stuart’s mother died 3 months before we were married.)  I really, really, really want to go.  They live in Tucson, AZ.  That’s a pretty long flight from RDU (Raleigh/Durham International Airport), and there’s always a lay over somewhere.  I’m very, very lucky that I have a couple of friends who have graciously offered to stay with me if I can’t go, so Stuart will still be able to go and be his father’s best man.  As much as I want to spend time with these friends, I really hope I can go.  Not only do I want to meet my new family members  (she has 3 children and 4 grand children!).  I want to see my dear friends who live there, and my niece.  (who will have a baby brother in January).

So everyone send good healing karma, and cross your fingers I can get in for an appointment with Dr. Gray earlier than expected!  I really need her to fix me up quick, so I can make it to the wedding!  (plus, Stuart and I really need a vacation!)

I think the Doctors are Listening

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain3 Comments
What? image by Wendy Holcombe.

thank you to everyone for the love and support you gave me after my last post.  You help me more than you can know.  It’s so good to know I’m not alone, and there are people out there who care and are sending me such good karma.

All of you would be so proud of me.  I wrote Dr. Gray an email and told her exactly how things have been going.  Really, you would be proud!  I didn’t sugar coat it at all!

She wrote me back yesterday (yes, on a Sunday), and said she was so very sorry.  She will call today, and we may have to try different treatments.  She mentioned me coming in and reducing my pressure.  She would actually take some out.  She mentioned I may need a shunt…not sure about that.  I have a friend who is getting one in November, she has high pressure and they can’t keep it regulated with medication, so they are giving her a shunt.  I don’t know enough about it to tell you, my friend has explained it, but it just sounds scary to me.  Here’s a link to an article on Wikipedia that explains it in more detail. http://en.wikipedia.org/wiki/Cerebral_shunt

Today, I’m trying the pills to lower my pressure again.  Dr. Gray sounds certain that it’s too high.  (remember, the last time I took this medication for a few days I ended up having a bad Meniere’s attack, and she thought my pressure was too low, so I was taken off the medication…it’s so confusing.)  But she sounds certain now that I don’t have low pressure.  That I’m in that rare margin of people who have high pressure that causes “blow outs” and then when she sees them they have low pressure…she patches them…and the cycle starts over.  I’m looking forward to hearing what Dr. Gray has to say.  Well, I won’t actually be hearing her, since I can’t talk on the phone, but Stuart’s pretty good at that.  I’m eager to find out how different the two myelograms were.  If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.

On top of everything else, yesterday afternoon after about 2 hours have having VERY LOUD tinnitus my left ear started to hurt.  Then it started to drain a clear fluid.  I do have a tube in this ear so it’s easier for it to drain if it gets too much fluid.  It didn’t pour out, but I had to keep cotton or a tissue in it or it would run down my face.  Like it did while I was sleeping….yuk.  Today the draining has pretty much stopped, and the pain is much less, but Dr. Kaylie wants to see me tomorrow.  He thinks,  “You may have had an otitis media.  You should come in tomorrow and let me take a look at it.”  So I have an appointment with him tomorrow at 3pm.  (FYI, in case you don’t know, otitis media is a middle ear infection, I looked it up.)

I’m looking forward to hearing what Dr. Gray has to say.  Well, I won’t actually be hearing her, but Stuart’s pretty good at that.  I’m eager to find out how different the two myelograms were.  If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.

I was so scared after reading Dr. Gray’s email about a possible shunt, and then having that fluid running out of my ear, I didn’t sleep at all last night.  I finally went to sleep around 8am, and got up at 11:30am.  Funny, I’m not exhausted today.  But it doesn’t take much energy to just lie in bed all day, so I’m not using up much energy.

Hope you enjoy the ear doodle.

Hearing Tests and finding me again.

On By WendyIn Medical Tests, Meniere's Disease4 Comments

I thought some of you might be interested to see the results of my past two hearing tests.

There’s a lot of information there.  The biggest thing that makes it hard, is the word recognition.  They simply can’t fix that with the hearing aids.  So, according to the latest test, I’m recognizing about 84% of the words I’m hearing in my right ear…and that’s if they are at the right frequency.  I’m not deaf!  Some things are difficult, but hopefully this is temporary, and if not…I’ll learn.

We still have much hope that things will change.  My doctors believe the hearing in my left ear will get better.  We’ll just wait and see.

I know many of you are concerned for me right now.  I’m doing OK.  Really.  It’ll  take time to process everything  Yes, my life’s plan will need to change.   I’m trying to look at things differently, not looking back and thinking of what I’ll miss, but look forward at what I can accomplish.

Last night I was writing and drawing and thought I’d share something I wrote:

Journal Entry Sept. 8, 2011

What started me on this journey?

The need to write and draw is now overwhelming to me.

How did I ever give this up?  How did I lose so much of ME?

***Hey You!***

Yes, You – That girl you look at in the mirror every day —

Welcome Back!

p/s  Please don’t leave again.  I’ve missed you.

Thank you all for so much for all the support.  Yes, I’m going through a rough spot…but with the support I get from you…my dear friends…it’s easier.

I never dreamed I’d feel such an out pouring of support from people I’ve never met in real life.  Many of you have reached out to me when I’ve needed it most.  I only hope in some small way, I can give to you as you have given to me.  thank you.

“We Have to Wait and See if…”

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain6 Comments

I started writing this post a few different times, but nothing I say seems to come out right.

I don’t want to sound all pessimistic.  I’m not…I’m hopeful…but I’m tired….and a bit frustrated.

I saw the audiologist, had a hearing test, and saw my Oto. , Dr. Kaylie, on Tuesday.  (August 6th)  It was a very emotional day, and I feel like all the answers I have are still…wait and see….

My hearing test was dismal.  My right ear is pretty steady, my left ear is now pretty useless.  Yes, even with the hearing aid.  It is hoped that it will come back, but it’s a wait and see kind of thing.  I scored 0% on the word recognition in my left ear.  This was my “good” ear before.  Now the volume is down like the right ear, but the sounds are so distorted I can’t understand them.  It’s heartbreaking really.

Finally, I asked Dr. Kaylie, “do you have any idea if I will continue to have relapses?”  He said no, “We’re in uncharted territory here.”  I was pretty sure that’s what he’d say.  But it still stung.

I explained that we were in the process of getting licensed to become foster parents, but without knowing, I just don’t see how we can.  Dr. Kaylie, looked very sympathetic, but he couldn’t say much.  He did say, since things improved so much before, he believes it will again.  That my pressure hasn’t stabilized yet.  He has every hope that my hearing will improve.   (for some reason, I’m not as hopeful.  I guess I’ve heard it before, with my right ear, and it didn’t get better, but at least it is stable now.)

If I take out my hearing aids, I can’t hear anything but very loud noises.  I can not make out speech.  Just a few months ago, I could still hear, and understand most words.  If I wear the left hearing aid, it’s just so I’ll have the volume control to work.  (button on right hearing aid is up, left is down)  There’s really no reason to wear it.  So did I waste $2000?  maybe…We have to wait and see if my hearing improves….

Will I be able to drive again?..We’ll have to wait and see if the disequilibrium gets better….

Headaches?….we’ll have to wait and see when your pressure levels out.

So I’m in waiting mode…..and I don’t like it!

I will post my hearing test for you to see soon.  (right now I can’t get it to come up on my computer…..I do have a love/hate relationship with technology.)  I will post the test from earlier this year, and the one from Tuesday.  You can see how much things have changed.

I posted a photo I created on my Create To Heal Blog, that I’d like to share here too.

Fractured Ear (Hearing)                                                                              by W. Holcombe all rights reserved.

During my hearing test I started to cry…just a little…I could tell things were very bad.  Then the audiologist tried to adjust my hearing aid to help…it didn’t work.  I held it together.  Until I got to the waiting room and saw Stuart, then I broke down.

I have to admit, I’m scared now.  More scared than I think I’ve been in a very long time.  If the hearing doesn’t change in my left ear, and if my right ear’s hearing diminishes…I won’t be able to hear.  It’s already so hard, just hearing parts of things.  Missing so much.  Dr. Kaylie says I’ll never be deaf, that he would give me a cochlear implant.  But, I’m scared.

And, now once again, I have to change my plans for my future.  I have to come to terms with the knowledge that, I will never be called Mom.  This is something that’s going to take me a bit more time to process.

So….We’ll Wait and See.

Please take the time to check out Kelly’s series on Fly with Hope this week.  Today, (August 8th) is my story.  “I want to live! But I don’t feel like I am!”

 

Also, take a minute to drop by Phylor’s blog and check out the playlist from other chronic bloggers.  A lot of great music, and a lot of inspiration!

And as always.  Thank you so much for all the support you give me!

 

Cerebrospinal Fluid Patches with Tisseel – A Photo Journey

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease4 Comments

This is a photo post of the procedure I had done on Aug. 22, 2011.

If things like this my disturb you, or if you have an aversion to needles, please do not look.

I’m publishing this, solely for those who have a curiosity about this procedure, and for my own prosperity.

I apologize I do not have any photos of the Lumbar Puncture, or the Myelogram.  I didn’t think to ask my husband to start taking pictures until we were at this stage.

1 - Marked Areas where Needles are to Enter.
2 - Apply Pressure (the CT scan lines up where to enter, and they take pictures the entire time they are working on each spot)
3 - Lidocaine
4 - Needle Remains
5 - CT scan of previous image. upper right - can see needle in inside.
6- Needle remains after first adjustment.
7- upper left - where needle was upper right - where needle is after last adjustment.
8- More adjustment
9 - upper right, where needle is after last adjustment.
10 - Final Adjustment
11 - add contrast dye.
12 - can see contrast on image
13 - adding Tisseel. (a Fibrin Sealant)
14 - Tisseel being added. Can see pushing the contrast deeper. They put contrast in so they can see where the Tisseel is going.

 

This series is patching one leak.  This had to be repeated for each of the 7 leaks they patched.

Please remember I’m on my face the entire time.  I did not see this procedure until I was able to see the photographs.  We are relying solely on my husband’s memory for the descriptions.  Please forgive us if something is slightly off.

Also, these photos were taken with his phone, so please forgive the quality.

(He was a bit more concerned about what was going on with me, instead of taking notes on the procedure.  I keep telling him, that he can do both…but somehow, he just doesn’t believe me.)

I hope you enjoyed your little snippet of my day at Duke Medical.

Thank you to Dr. Linda Gray Leithe and her wonderful team for allowing us to take photos, and for taking such wonderful care of me.

An Evil Goblin Lives in my Head.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

I’m finding the drawing journal to be very therapeutic.

Day before yesterday was a very, very bad day.  I was awakened by one of the worst headaches I’ve ever had.  The lower part of the right side of my skull, and down my neck was…well, I can’t think of a good adjective…let’s just say, I was in a huge amount of pain.

Throughout the day I kept trying different meds to see if anything would work.  They sometimes made it better, often not.  I was nauseous, and just miserable.  That afternoon, I turned to look at Stuart and the world moved.  I felt all the symptoms of an attack starting.  The world was off-balance, but not completely spinning yet, I got HOT, I didn’t feel like my head and my body were listening to each other….I told Stuart…”It’s coming!”  He ran and got my medication, some cool wash clothes, and trash cans….he was getting prepared.  I’m happy to say the whole world spinning part didn’t happen, I didn’t throw up…but I was amazed when it started to calm down and didn’t become a full-fledged vertigo attack.  (I have a question, anyone else out there who has these attacks, when it first starts to you really have to go to the bathroom…bad?  Every time it starts, I have to go!  I don’t want to get up and move to go to the bathroom, I just want to stay as still as possible…but I can’t I have to go!)

For the rest of the day, the tinnitus was very loud, my head hurt, and I was exhausted.  I had to use my walker.  (very strange thing I’ve noticed, a lot of time when the tinnitus is at it’s worst, I can hear better….isn’t that the strangest thing you’ve ever heard?)

I’ve decided that I have an Evil Goblin living in my Head!  And he looks something like this:

Doesn't he look Evil?

These are his torture devices:

Look Familiar?

Here’s another sketch of my Evil Goblin (the original looks better.  I didn’t realize photographing graphite was so hard.)

face of the Evil Goblin in my head.

I hope you have enjoyed a view in my head.

Wanted to let everyone know that my appointment with Dr. Gray has been moved up to the 22nd.  I’m still on the cancellation list and if anything comes up before then…keep your fingers crossed.

Living for the day.  One day at a time.

A short little update.

On By WendyIn CSF, Medical Tests, Meniere's Disease2 Comments

I just wanted to let everyone know that Dr. Gray answered my email.

“Hi Wendy,

I will work with Horace to find a sooner slot..thanks for letting me know!

hang in there

Linda”

(FYI -Horace is her scheduling secretary)

Today, the hearing in both of my ears is way down.  It’s so confusing.  The roaring is not too bad, and I just have a slight headache.  Am still trying to stay horizontal as much as possible.  It does seem to help, but being flat on my back all the time is really no fun.

More soon.

Thank you all for your wonderful support.

I really don’t know what I’d do without the support of my friends on here!  Your belief in me, and my strength, is a major part that keeps me going.

Another Possible Chronic Condition – SVT

On By WendyIn Chronic Illness, Health, Medical Tests11 Comments

I saw my neurologist yesterday as a follow up for my migraines.  Since I’m having another lumbar puncture next week, she decided to wait on adjusting my medication.

She asked me if I’ve fainted recently, and I told her about my near fainting episodes last week.  Sometimes I’ll have a rapid heart beat for no reason.  You may recall my post about Halloween night last year, “Guess What I did Last Night”.  (It about a trip I took to the ER because of my rapid heart rate.)  Last week I had two of those episodes, however, with these I nearly passed out both times.  That hasn’t happened before, and I don’t normally have them so close together.  One time I was lying in bed reading when it started, when I was at the ER they told me to put cold water on my wrist and/neck when this happened and it should help.  So I got Stuart to get me a wet wash cloth, but it wasn’t very cold, so I got up to run water on my wrist in the bathroom…and the world started to go dark.  I could feel me passing out and just laid down on the floor real fast.  Soon it past.  When I got back up and in the bed my heart beat had slowed down.  A couple of days later I was taking a bath, and it happened again.  I tried running water on my wrist and started feeling like I was going to pass out.  I ran cold water on my head, and it helped.  But now I realize just how dumb it was to stay in the bath when I was feeling faint.  Yeah, not bright, I know.

After hearing about these incidents, my doctor thinks I may have Supraventricular Taachycardia (SVT).  But it’s hard to definitely diagnose this because once get to the hospital the episode has often passed.  Next time it happens, I’m supposed to make sure and get a heartbeat count.  Stuart tried this last time, but he lost count because it was going so fast.  He thinks it was between 140 and 160 beets per minute.  I’ve tried counting it before and got about 200 beats per minute.

This is often not a serious condition and doesn’t need any treatment.  However, my doctor is concerned because of the faint feelings I’ve been having.  That could be dangerous, or signal that this is something a little more serious.

Right now, I just have to wait for another episode, and take good notes.

She also saw Stuart today because of his episode.  He will be going in for a EEG to check out his brain waves.  She wants to rule out a seizure.  That could make it hard for us to foster/adopt.  But I’m much more concerned about his health and safety.  She admitted that she sees many people who have strange episodes happen just once, and they can’t figure out what happened, and it never happens again.  She just wants to rule out some things.  She also mentioned that he could be having a certain type of migraine.  It would cover the symptoms he had, and you don’t have to have a bad headache to have a migraine.  We’ll be keeping an eye on him for a while too.  The EEG isn’t planned until late this month.

Another Lumbar Puncture..Myelogram…CSF Patches??

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain4 Comments

Dr. Kaylie and Dr. Gray agree I should have another lumbar puncture, and if my pressure is low, I will have another myelogram and patches the same day.  Next, Thursday we’ll find out my symptoms either have nothing to do with Cerebrospinal Fluid, or I’ll be getting more patches.  Can you guess which answer I’m hoping for?

At first I was very concerned, why would I be getting new leaks?  What would this mean for the future?  Will I have to do this over and over and over again?

Then Stuart said something that made so much sense, I thought, “Why didn’t I think of that?”

photo courtesy of http://www.superstock.co.uk

Imagine you have a water hose, and it has a few leaks in it.  You patch all of the leaks but one, at first that one leak doesn’t seem to get any bigger, but after the pressure builds in the hose the leak gets bigger.  Or there may be other weak places in the hose, and since the other leaks have been patched and aren’t there to release the pressure, they start to leak.

Doesn’t that sound obvious?  He’s so smart!  And made me feel much better.  Surely, there will be a finite number of weak spots, and this will happen a finite number of times!

I’m a little nervous about going through this again.  No, the procedure really isn’t that big of a deal.  The worst part is getting the IV before the procedure.  As the phlebotomists say, “I’m a difficult stick.”  I have very small veins that like to roll away from the needle.  To make it worse, they keep it cold in there, and that just makes my veins shrink up.  It usually take them a number of tries before they can get the IV in.

Kind of ironic huh?  I’m going in for a Lumbar Puncture, possible myelogram, and CSF patches; and I’m more concerned about getting the IV than anything else.  Guess I trust my doctor, more than the phlebotomist.  hummm.

 

Hubby is Home!

On By WendyIn Life, Medical Tests7 Comments
Doctors just don't know.

I’m very happy to say that my hubby is home, and seems to be well.  Very tired, and is sleeping right now, but much more like himself.

The cardiac MRI came back great.  The brain MRI came back showing no signs of a stroke.

They really have no idea what caused this episode.  As we all know, that is hard.  Since we don’t know what caused it we don’t know how to avoid it.

One of the doctors he saw said he had the same symptoms about 10 years ago.  He said they never found out what was wrong, and it has never happened again. *shrug*

When we got to the ER yesterday Stuart’s blood pressure was very low.  They said he simply wasn’t getting enough blood flow to the brain, they have no idea why.

He is worried because his judgement was so impaired while this was happening.  He knows he should have come home when he first got double vision, and he feels normally he would have, but it didn’t even occur to him that something was really wrong.  He doesn’t remember most of the episode.  What he does remember I’m not sure if he really remembers it, or if he just remembers what I’ve told him.  He doesn’t remember being in the store at all.  He doesn’t remember getting to the hospital, being in triage, or the first few hours in the ER.  His memory starts with the second CT scan last night.  (Except he does remember when he threw up…I think that is very traumatic for him…unlike me, he’s not used to it.)

Oh, I did find the rest of the groceries.  It appears he took my car to the store!  Something he just doesn’t normally do.  I went to drive my car this morning to go the hospital and there in the front floor board were the sodas and milk.  (luckily we were buying this milk to spray on our squash plants to get rid of the powdery mildew on the leaves, not for consumption.)  It was also very strange that he put the groceries in the front of the car, he always puts them in the trunk.

My hearing is still down, and I got a bit dizzy today, but I took Valium and never started getting into a full spin.  I hope it stays that way.  I just don’t need that right now.  Not that I ever need it, but I really need to be able to be there for my husband.

Thank you all for all the best wishes and thinking of us.

It makes me feel so much better knowing I have you to talk to and call upon when I need some uplifting.

Thank you all for being my friends.