A little good (lumbar puncture results) and a little bad (a very bad night).

Dancers - painting by Wendy Holcombe

I thought about posting a picture of a lumbar puncture here, but it’s really kinda scary looking.  So I thought I’d just post a picture of something happy.  After all, the results were pretty amazing.

I went to Duke University Hospital’s Neuroradiology department yesterday and had a lumbar puncture to measure the opening pressure of my spinal fluid.  Dr. Gray does this with the help of a CT scan to make sure she is in just the right spot.  She also completely numbed the area so I didn’t really feel anything.  (Except the stinging from the numbing medicine, but it doesn’t last.)  The hardest part of this test for me is that I couldn’t talk and I couldn’t see what they were doing.  When I’m nervous I crack jokes and generally just talk a lot, so keeping quiet was not easy for me.  I’m so very grateful to Dr. Gray for allowing my husband to come back with me during the procedure.   He stayed right there and held my had the whole time, he really does doat on me during times like this.  (Thank you honey.)

The insertion of the needle doesn’t take very long at all, but it takes a long time to actually measure the opening pressure.  Before the procedure Dr. Gray told us that “normally” below 10 is low and above 20 is high, but she realizes that not everyone has the same “normal” reading.  So my opening pressure was 15!  Can you believe it?  How much more in the “normal” range could you get?  Luckily, Dr. Gray uses emperical evidence instead of just saying, ok, you’re normal when test read normal.  She decided to add a little artificial cerebral spinal fluid in to see what happened.  At first I didn’t really notice anything, I was concentrating so much on my back, I didn’t realize my headache was gone.  Then she kept talking to me and I realized I could actually hear her.  Not just a word here and there so I could figure out what she was saying, I could HEAR her!   More than that, I could hear her out of my right ear, the ear that I have severe hearing loss and haven’t been able to hear someone’s speech clearly in that ear for a very long time.  No, my hearing wasn’t perfect, it was still a little muffled, but I could hear.  I had been getting pretty dizzy during the procedure and it was gone.  How cool is that?

The results?  Dr. Gray says I am leaking spinal fluid and she needs to find it and patch it.  So I will be having a myelogram on November 24th.  They will insert a contrast dye in the fluid filled space around the spinal column.  Then I will have a CT scan and the leak should show up.  Dr. Gray will then patch the leak(s) with my own blood.  (I thought that was cool.)

I asked Dr. Gray, “What if you don’t find a leak?” She answered, “We will.”  She is a very up beat doctor who gets so excited when she discovers something.  She is making such a difference in so many people’s lives.  She told us about a couple of her patients, one had not been able to hear for over 18 months, during her procedure she started hear again.  She has taken the pain of migraines away from many patients.  She is a very open and caring person, you just can’t help but like her as soon as you meet her.

I stayed in recovery for an hour, got a little to drink and ate a banana.  Then I walked myself out.  On the way home we stopped and got something to eat.  My back really started hurting while we were sitting there, but as soon as I got up it helped, and when I got home and lay on the couch I felt much better.

 

Chilled Disequilibrium by Wendy Holcombe

 

Unfortunately, about 12:30am I woke up with the vertigo starting.  I took Valium, and Phenergan but everything just got worse.  I had the complete spinning fast rotational vertigo complete with some of the most violent vomiting I’ve ever had until about 4:30am.  At that time I simply collapsed from complete exhaustion.  (during all of this I had 3 Phenergan suppositories, the first was lost with diarrhea.)  I do not remember being that bad off since the time my husband called for an ambulance because I was scaring him so much.  He asked many times last night if I wanted to go to the hospital, but he had to agree with me that the last time I went they couldn’t do anything that we weren’t doing here.

Does anyone else hear unusual sounds during an attack?  I don’t mean just tinnitus (the roaring was so bad last night it was driving me insane).  But I hear things that sound like words off in a distance.  It’s most disconcerting.  Lately, with my tinnitus I’ve been hearing a tick.  When I’m trying to go to sleep at night I really notice it.  It’s not a rhythmic ticking sound, just once in a while I’ll hear something tick or click.  I’ve asked my husband if he can hear it and he can’t, I thought maybe I was just hearing a certain frequency when I couldn’t hear the others so I put in an ear plug and I could still hear it.  This new noise is most annoying, I’ll be almost asleep and then, Tick, and it startles me awake.

Today, I feel horrible.  I haven’t been out of bed, except for the many trips to the bathroom with diarrhea.  My stomach hurts so much every time I eat or drink anything.

Stuart talked to Dr. Gray today.  She is sure that this severe attack was caused because she made things better yesterday and now it is leaking out again.

I will be so happy when this is over.  I don’t know if she will find a leak, I hope so.  If she doesn’t, I’ll cross that bridge when I get to it.

Right now, this looks so very promising.   Of course, I will keep you informed.

It just amazes me at how much we have to search and search to find the right doctors.  I’ve seen so many doctors and, let’s face it, some of them shouldn’t be practicing medicine.  Many are just in it for the money.  Many get very uncomfortable when your symptoms are out of their comfort zone and they just drop you.  I’ve had a doctor who did that, he actually called me on the phone and said he couldn’t see how to help me and didn’t think I needed to come back.  No referral to a doctor he thought might be able to help, no option to for my medications, nothing.  Those are doctors who just don’t care about their patients.

You could also do a lot of research trying to find the right doctor, but then not have the resources to go and see him or her.  This really bothers me.  I wish there was some way I could help.

I feel very fortunate I finally found Dr. Kaylie, who sent me to see Dr. Gray.  These 2 doctors have given me hope that I haven’t had for a very long time, and they treat me like a person, I believe they really care about what they are doing and want to help people.   I’m also very lucky because I only live a few miles from Duke.  (I know I give Duke a lot of praise but I know, not all the doctors at Duke are as caring and through as these two are.  It was a doctor from Duke who dismissed me as a patient over the phone.)

 

 

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3 thoughts on “A little good (lumbar puncture results) and a little bad (a very bad night).

  1. Hope you’re feeling better soon. At least you have promising news to tide you through the yucky day…..
    Sending you healing thoughts.

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  2. sorry you had such a bad night following the lumbar puncture. hope you are feeling much much better by now.

    but as for the lumbar puncture, how fascinating!! your hearing improved with increased spinal fluid? wow. wow. wow. so what does this mean? if they find the leak, could your hearing come back? what’s their theory behind all of this? is this something they think would work for all meniere’s patients or just certain subsets? could i think of anymore questions to ask you?

    sorry. i’m just so…fascinated by it all. i’m curious by nature and a science geek to boot. this is a new theory that i hadn’t heard of so whenever you are feeling better i would love to hear more about it if you don’t mind.

    wow. so excited for you. can’t wait to see how things go when they patch things up. hope you feel lots better soon!!

    ~nicki

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  3. Wendy,
    What fantastic news! I am so sorry you had a rough night. But how wonderful that you may actually have an answer. There have been so many treatments talked about recently, but for you this could be a cure. I am so excited for you. Please post how you are feeling. I can’t wait for your procedure on the 24th so I am sure your excitment will be hard to contain.
    Feel better soon and know that we are all pulling for you. A success for one is a success for all~
    Deb

    Like

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