Category: CSF

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.

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Glad I don’t own a Gun.

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

Yesterday was one of those really, really bad days.

It started off fine, I went downstairs, had some breakfast, was watching some cartoons.  And the noise in my ear started, and got louder, and louder.  My head started pounding.  I went to lay down, and it just got worse and worse.  I was screaming to please make it stop, that the doctors don’t understand, that I couldn’t stand it.  I was dizzy, and felt like I was going to throw up at any moment.   I told Stuart, if this didn’t stop I would make him hate me, because I’d have to stop it.  I knew then that if I had a gun I would have blown my head off just to make it stop.  (NO, I don’t want to kill myself, but the pain and noise was so unbearable.  If you’ve never been there you just can’t imagine.)  I’ve dealt with horrible, mind splitting headaches, and I’ve dealt with the deafening tinnitus. (yes, I know that’s a strange thing to call it, but if it was coming from the outside of my head instead of inside, that’s how it would feel.)  But dealing with the two together, is just too much!

It hurts me so much to see my husband wanting desperately to do something to help, but he can’t.

I took two Vicoden (Hydrocodone), a Valium, and Phenergan.  Finally, it started to ease.  In no way did it go away, but I wasn’t writhing in pain any longer.  We propped me up on an incline to try to ease my pressure.  It seems if I’m too flat it hurts worse, if I’m up right it hurts worse, but being on an incline helps…sometimes.

I wrote an email to Dr. Gray last night.  I wanted to make sure she knows how desperate I am right now.  I sent a copy to Dr. Kaylie too.

There has to be a way to make this better.  I was so much better for so long.  I believe, I can be that way again.  But I know now, that I will never stop living in fear that it will come back.  On any given day, at any time, I could have my life fall apart…over and over again.  Dr. Kaylie calls it “Random Punishment”, you never know when it will happen, but you know it’s coming.  I’ve had it explained to me, that it’s similar to serving in a war.  You aren’t under fire all the time, but you are constantly aware that it could happen at any moment.  That does things to a person’s mind.  Talk about anxiety!

This piece is still in progress, but I felt like it was appropriate for today.

So I will have the courage to enjoy every moment I have when I’m not enduring that hell.  I will never take a day for granted.  One day at a time….just one day at a time.

It’s the Little Things.

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain13 Comments
I created this the night after my bad attack. (W. Holcombe all rights reserved)

It’s the little things that make me happy right now.  I felt so proud of myself today.

I spent the entire day out of bed.  I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.

The meals I got for myself were just left overs, but I did it!

I walked by myself, and cleaned myself up…all by myself.  (yes, these are things I haven’t been able to do without help.)

I filled 5 pages in my sketch pad today.

My internal clock is still way out of whack.  I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon.  If I try to get up earlier so I can go to bed earlier, it just doesn’t work.  Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep.  Or, I still can’t get to sleep until the wee hours of the morning.  Ugh.  Guess I’ll talk to my doc about it next time.  I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.

I hope I have more days like today, and continue to feel better.  It’s been a rough road lately….but I’m making my way down it.

I feel so guilty.  I’ve told so many people about the success I was having after having my CSF leaks fixed.  I know of a few people who sought out the treatment because of me.  I’m not saying that I’ve given up, or that I think things won’t get better.  But right now I’m not sure, and I’m just afraid I made it seem too easy.  I think I’ve always let everyone know this is an experimental treatment.  However, it was working so well for me.  I was normal again.  I just want for all of us who have that feeling…being normal.   Did I give people false hope?

Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.

Once again, I feel at a loss for the right words to express how I’m feeling.

I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.

I hope you guys understand.

Attack Time

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain15 Comments

On Saturday I woke up with my ears feeling very full.  (they normally feel like I have wet cotton in them, but this was worse.)

I noticed I kept having to ask my husband to repeat himself.  (even more often than usual)

These should have warned me, but I didn’t listen.  For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.

But I was feeling pretty good!  We decided we’d make a trip to the grocery store.  I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved.  I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.

Things settled down, and I settled in for a day of drawing and relaxing.  (forced relaxation, but relaxation all the same)  Stuart decided he’d mow the lawn.  (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.)  He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him.   I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink?  I have no idea…but I started to feel bad…really bad.

I called Stuart’s phone…nothing.  I called again…nada.  I knew there was some medication on the bar in the kitchen, if I could just get there.  I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar.  I didn’t make it.  But I made it to the window and Stuart saw me.  He walked in the door, and I hit the floor.  He got me some medication, but it was too late. (who knows it may not have worked this time anyway.)  I didn’t feel that bad, really.  I felt like I was having a mini-attack, but would be fine.  Until I started to get off the floor.  I couldn’t do it.  I tried to crawl to the couch.  That wasn’t happening either.  So I lay there behind the couch clutching the carpet…and I panicked.  I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor.  Then the vomiting started….and a headache from hell!  Stuart said, “I’m calling an ambulance.”  I said “NO!”  (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.)  Stuart was concerned my CSF pressure was dropping too low.  I told him to call Dr. Gray.

Luckily, the pain and the attack didn’t last very long.  (less than 2 hours I think)  I dozed off for a couple of hours.  When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit.  We cleaned me up and put me to bed.  That’s when the terror set in.

I was absolutely petrified to go to sleep.  I didn’t feel quite right, and I didn’t want to wake up having an attack.  But it was more than that, I don’t understand it really, but I was scared.   I was also very afraid of being alone.  If Stuart moved, I panicked.  Was he leaving?  Were was he?  I was terrified, and it wasn’t rational.

Since then, my headaches have fluctuated between moderate to severe.  The day after an attack, I always have digestive issues.  I end up in the bathroom a lot.  Every time I had to go, my head would explode.

Stuart and Dr. Gray emailed back and forth, and talked on the phone.  She said to give it a few more days, but she thinks I may be a rare case.  Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this.  She treats them for the low pressure, only causing more “blow outs”.  (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)

I have a question for my fellow Meniere’s sufferers.  When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things.  (like the flu, food poisoning…or having a bit too much to drink..)  It’s violent.  I gag so much, I can’t breathe, it’s so scary.  My stomach hurts so much, and I constantly feel like I have to go to the bathroom too.  This time I had such violent spasms that my jaw popped.  It was so painful, my mouth was trying to open further than it should.

So my question is:  Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?

I swear it’s so horrible I would do anything to stop it.  All I want to do is die during these attacks….just make it stop.

Why can’t they fix us?  Why can’t they at least figure out how to control the symptoms?  I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.

Don’t get me wrong.  I’m very grateful that I had nearly 5 months of being virtually symptom free.  This is the first severe attack I’ve had since January!  I’m very happy about that, and it does give me hope.

I am also so very grateful that I have the support of my husband.  I have such respect for those of you who have to endure this without help.  I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years.  I have been through attacks alone.  It was terrifying…and at the time I didn’t know what it was.

Stuart really helped during this attack simply by talking to me the whole time.  Telling me how much he loves me.  Repeating soothing words over and over.  I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.

 

“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!

 

Oh What A Day!

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain5 Comments

I really over did it on Wednesday, it was a good day, but I’ve paid for it.  Would I do it again?  Yeah, probably, you never know if you’ll get a different outcome!  Yesterday, I was sore all over and had a nagging headache.  I did take some Diamox, but not a lot.  I’m still a bit afraid of that stuff.

Blinding Headache (image, property of Wendy Holcombe)

Guess, I should’t be so afraid of it!  Today, I woke up with a headache so severe I couldn’t stand up by myself.  No matter what I took, it would not get better.  I was super nauseous.  This is the first time I’ve ever considered going to the hospital because of a headache.  Usually, I think…if I just take a little more medication, and can fall asleep things will get better.  Nope, not so much.

Finally, Stuart talked to Dr. Gray for the 3rd time today, and she said to prop me up, so my head and shoulders are raised.  (she actually said for me to sit up first, but I was way to nauseous.)  After sitting up about 20 – 30 mins, I started to feel so very much better.  So my pressure had spiked again!  I will have to stay on the Diamox a bit longer.  I don’t like that.  I’ve been struggling with low pressure cerebrospinal fluid for a long time, now I’m taking a drug to lower my pressure…crazy.  I’m petrified I’ll end up taking too much and making myself have an attack because my pressure is too low.  Plus, I really hate the side-effects.  My hands and the heels of my feet tingle, and I feel really stupid.  Everything, seems dull.

I don’t like it.

Tomorrow, is our 7th Anniversary.  We had planned to go out for a romantic dinner…those plans may change.  I think a Couch Picnic…as mentioned on Maureen’s blog, Sunshine and Chaos, may save the day.  : )

A Pretty Good Day

On By WendyIn Chronic Illness, CSF, Meniere's Disease, PainLeave a comment
Our Damage From Irene : )

I thought everyone would appreciate that the only damage we received from Irene, was that our wild flowers are now on the ground.   I must say, these flowers have grown completely out of control.  I just planted a bunch of mixed wild flower seeds in this area, they were supposed to range in height from 6″ – 24″.  We have some that have passed 3 feet high, and are close to 4 feet.  I guess I should say, they were…now they are leaning quite a bit, and covering our walk way.  I’m so relieved that we have been spared both the tornado, and the hurricane that has come through out area in the past few months.  (Did feel the earthquake, but we used to life in California, we just thought it was weird here.)

Now…on to the story of A Pretty Good Day:

Today I woke up and was excited because Stuart mentioned if I felt alright we would go to the grocery store.

Yes…that sounds sad, but getting out of the house…heck, getting out of bed isn’t something I’ve done in a while.  As of last night, I’d been out of bed about 4-5 hours total since Aug. 22nd.  8 Days.  Wow.  (and those hours were spent on the couch.)

Well, I decided to take on much more than the grocery store, I wanted to go to Michael’s – the Arts and Crafts store.  I had the desire for new art supplies, and a new sketch pad.  Since I’ve been doing so much more art, I needed some new stuff.  I got 2 sketch pads, one has 90 lb. stock paper (this means it’s very thick and you can use watercolor on it.)  The other is just a sketch pad, about 50 -60 lb.  Not sure exactly, I found it in the Bargain Bin at Barnes and Noble.   So yes, I went to Michael’s, Barnes and Noble, Target, and Earth Fare.  We even ate at Earth Fare’s hot bar (Earth Fare is like a local…well, NC based…Whole Foods.)

I got new pencils that are so cool.  They are called Inktense by Derwent.  They are like watercolor pencils, but they are ink based.  Hard to describe, but you can draw with them just like colored pencils, then if you add water, the color gets vibrant, and very…well…I have to say it Intense.  I’ll be posting a drawing I did with them on my other blog Create to Heal.  If you are interested.

I feel like I easily walked a couple of miles today.  I over did it.  When we were walking around Target I know people thought I was drunk.  I kept losing my balance, and my words were not coming out right.  Stuart kept asking if I was alright, and I said I was….and I felt that since I understood I wasn’t quite right, then I was alright enough.  I explained this to him, and he seemed to take it in stride.  (remember, when he had his “episode” he thought he was fine, and he was…oh, so NOT.)

So great news today.  Minor nagging headache, haven’t needed to take any Diamox (the drug that lowers your pressure, and has icky side effects).  Off balance/disequilibrium a lot, but no spinning.  My hip/back/and knees all hurt….oh and so do my feet.   I’m sure the hip is going to yell at me tonight when I’m trying to sleep.  I’m going to get in a hot bath very soon.

Yesterday I published a series of photographs that I manipulated to show the intensity of my headaches.  I think some of you might like this: Translating My Headaches Into Images.

I’m sorry to see the summer coming to an end.  At the beginning of this summer, I had such hope, so many plans….and no frigging idea I’d have to have 2 CSF procedures!!  Well, look out Fall, because I’ve got a lot of making up to do!

Recovery is a bit rough this time. (this is my 150th post. You guys are awesome!)

On By WendyIn Chronic Illness, CSF, Disability, Meniere's Disease, Pain10 Comments

After all the warnings from previous procedures that my pressure could spike afterward…and it didn’t…well, I thought it just wasn’t going to happen to me.

Ummm. WRONG!

My  pressure spiked, and my head has been killing me.  I’m taking Diamox to lower my pressure, and that scared the bejebez out of me.  (No, I have no idea how to spell Bejebez but if you use phonics, it sounds right…doesn’t it?)   Any way, I’m petrified that I’ll get my pressure too low, and start spinning and all of that mess.

I’m having the weirdest tinnitus in my left ear.  Sounds like a rail road train, (sometimes), other times, it sounds like a very loud squeaky swing….and just all kids of things…but that’s not the weird part.  It changes if I put my hand near my ear.  If I touch around my ear, it gets louder!  And if I hic-up (which I seem to do very often), it has a very loud DING-DONG.   Driving me insane.

Think I may have taken too much Diamox yesterday (Dr. Gray was pretty vague on how much to take, take it until the headache stops.  Up to 1500mg at one time…notice not in one day…but at one time.)  Feeling kind of lost there, but since I couldn’t actually talk to her, well, Stuart doesn’t think to ask some things.  But yesterday, the world was spinning, I was amazed I wasn’t throwing up.  The world was really moving!!

My usual spot for the past week. Lots of love surrounding me.

I’ve spent the last 6 days in bed.  Well,, I tried to get up to the couch a couple of times…so I was probably up for about 3 hours total.

I feel so helpless.  Stuart usually has to help me get to the bathroom…even pull my pants down…how humiliating!  And then the most humiliating thing…and I really thought I was better about this…is when he has to give me a suppository.  I just feel so …. dependent…helpless…and just icky.  When your husband sees you naked, it shouldn’t be to put medication up your butt! Or help you go to the bathroom!  Yuck.

I feel like I have some terminal illness, and I’m just waiting to die.  It reminds me so much about taking care of my mother when she was so sick.  I know she never planned for her daughter to have to do private things for her.

And to top it all off, my hearing aid BROKE!  For the second time!

You may remember this picture below when I was showing off my new hearing aids:

The one on the left, is the one that keeps breaking.

For the second time now, I was cleaning my hearing aid, just rubbing it gently with a tissue, and the little part that holds it in your hear, has snapped off.  I’d only had the second hearing aid for about a week.  I’m so ticked!  I’m asking them to make me a new one out of the same stuff the right one is made from.  It is a much sturdier material.  The clear plastic, just cracks, like old dried up plastic does.  It’s so strange.  I’m getting a hearing test on Sept. 6th, and they will order the new hearing aid then.  (I think they have to make a new mold for this type of insert.)

I think that’s all for today.

I did want to mention, If you liked seeing and hearing about how my art has been helping me through all of this, I started a new blog that just talks about that.  It’s called Create To Heal .  Come see me, let me know what you think.  Join me in my journey.  Create Art.  Have Fun. Feel Better!

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.

Short update – with promise of more to come…

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

Yesterday I arrived at Duke Hospital at 7:30am (after just 3 hours of sleep the night before…I am NOT a morning person!)

Got in my hospital gown, got my IV in place (of course the girl didn’t listen to me and tried to stick me where I knew she wouldn’t be able to get a vein…yes, I know it feels like a nice vein, but it’s deep and it rolls out of the way…every time!)  I told her exactly where to stick me, she said, those veins don’t like to cooperate.  I mentioned, this was my 5th time having this done.  After, botching the first try (thank you very much for the nice big bruise) she tried where I suggested.  Got it, no problems.  Hummm, would be nice if they listened wouldn’t it?

Talked with Dr. Gray.  Decided if my pressure was low she would do another myelogram, and more patches.

And that’s what happened.  My pressure was 17, a little higher than last time, but still low..for me.  I had a headache, she added some CSF, and voila, it went away!  Just like that…strangest thing, I just can’t get over how that feels.

I was then given a myelogram (that gave me one heck of a headache, luckily, they had nice pain meds on hand for me.)

Then I was patched in 7 places.  Most of them in my mid back, one lower.

Marked for CSF patches.

I did ask Dr. Gray why some of the punctures were so far away from the spine.  She said, “The reason the needles are out farther is that they are directed to the area around the spine but the anatomy is such that in order to negotiate the transverse processes you have to take a steeper angle, farther out from midline.”

She will compare the old myelogram and the new myelogram and let me know if these were new leaks, or if the patches on the old leaks haven’t been holding.  That is the BIG question!  From there, we’ll have more questions….if new leaks, why?  will I continue to get new leaks? how to stop it? If old leaks, why isn’t the sealant holding? how can we fix it?

I have lot’s of pictures.  Some play by play action of getting patched up.  I promise to post them soon.  Hopefully, tomorrow.

Today, I have a dreadful headache.  My pressure may be spiking, getting used to not having the leaks.  Taking meds, but it just doesn’t seem to be touching it.

The procedure went well, very minimal pain.  My back doesn’t hurt hardly at all now.

Am trying to be cautiously optimistic.  (but really, everything is going to be great, isn’t it?….oh, please. oh, please..)