A Challenging Time..My first LP #HAWMC April 9th

This month is Health Activist Writers Month Challenge, put on my WEGO Health.  I’m getting a really late start, and since I’m having surgery on Tuesday, I probably won’t get many of the prompts done, but I thought I’d try to complete as many as possible.

I wrote the following story about the day I had to have my first lumbar puncture.  It was a challenging day to say the least.  I got through it because I researched it, and I trusted my doctor.  Now, I’m not saying to put all of your trust in just any old doctor.  This doctor had been seeing me for a while and deserved my trust.  Not only did the research and the trust of my doctor get me through this challenge, but he support of my husband helped me so much.  He was there with me every step of the way.  Having that kind of support really helped me through this challenge.  It also helps me to think about others who are going through the same thing I am at the same time and send out love and compassion to all of them, this will include myself.

This story was written about a procedure I had on November 3, 2010.

Me a recovering after a lumbar puncture.  It wasn't so bad.
Me a recovering after a lumbar puncture. It wasn’t so bad.

Wendy sat in the waiting room, waiting for her name to be called, waiting for another test, waiting for one of the scariest procedures she could think of having done. Her husband tried to make small talk, and he held her hand. She knew how lucky she was to always have him by her side, he always made things better just by being there. Could he possibly know how terrified she was? She wondered if she could be as understanding and supportive if the circumstances were reversed? Could she be so selfless? Could she simply do what was right? For him, she thought she could do anything.

Looking around the room, Wendy wondered how many people were going to have the same test she was having? How many people were unsung heroes like her husband? How many were there because they felt they had to be?

“We want to do a lumbar puncture.”, the doctor had said. “We have found that some patients with your symptoms have abnormal cerebrospinal fluid pressure.”

“Alright,” she said. Why did she believe this doctor so much? He is a specialist in vestibular problems, but it was more than that, he gave the impression that he really cared. She knew deep inside that he would never ask her to do anything he would not do if their situations were reversed.  She quietly asked, “Is it painful?”

“A Lumbar Puncture is a Spinal Tap. However, your procedure will be done under a live CT scan, and you will be numbed. It is not scary like it used to be. Not when it’s done under such a controlled environment.”

The only words that Wendy heard were, Spinal Tap. When she was a small child she was scheduled to have a spinal tap, but the doctors decided to try different testing to see if they could find out the answers they needed without putting a small child though such a “painful” procedure.

This memory came flooding back. She could taste the bile in the back of her throat, the tears forming that she refused to let fall, she would not show the terror she was experiencing. She nodded, as the doctor spoke, hopefully at the proper times. After leaving the exam room and making the appointment, she couldn’t make it the car fast enough. She broke down.

She had been through so much this past year. The vertigo attacks often lasting hours upon hours, many days each week. The surgery on her right ear that helped the vertigo caused by that ear, but now the left ear was causing just as much trouble. The profound hearing loss. She’d simply lost so much, would this test help? Could it actually provide any answers? What if she refused?  Could they do something else?

Her husband patiently listened, and told her, “You can always change your mind. Just give it a few days and see how you feel about it. Do more research. I know you. You don’t want to make a decision based on emotions, you will want to find out more, much more, before making that kind of decision.”

Of course he was right. A spinal tap! The fear stayed knotted in her stomach for days. She read as much as she could about a lumbar puncture performed under a CT scan. She also found out as much as she could about the doctor who was going to do the lumbar puncture.  She found that a lumbar puncture preformed as hers was scheduled should not be a painful or dangerous procedure. She also found that the doctor performing the procedure was very highly respected.

She also found that many times a lumbar puncture is performed just like they always have been. This brought back all the fear.  The poor patients that must undergo this test.  It’s painful, it’s scary, and it’s dangerous; but she understood sometimes people cannot have a CT scan but need to have the procedure done, or it has to be done quickly.  Relief swam over her knowing she would not have to undergo that type of procedure.  She silently sent out love and compassion to all who were having a lumbar puncture that day.

“Wendy?’ Her husband pulled her from her thoughts….. “They’re ready for you.”

She’s Low – Again…

Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.

Here’s a copy of the mass email I sent out to friends and family last night:

I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)

The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure.  She said I had “high symptoms”, so we go in expecting my CSF to be high.  Surprise, it was low.  Lower than it has ever been.  (this was my 6th LP).  She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better.  The more she removed, the worse I felt.  my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous.  So she put back in all the fluid she removed, and started adding more.  5cc’s at a time.  She ended up adding 15cc’s extra.  (they said that’s a lot)

My pressure went from 15 to 21.5.  Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.

So right now, I have been taken off all meds that might lower my pressure.  I have to drink a lot.  (I think I already do, but she said more!)  Trying to keep my pressure up without having to do more patches.

I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding.  If it drops after that, I’ll be seeing Dr. Gray again.  She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had.  One from November 24th, 2010, the other from August 22nd, 2011.  She said there were no real new leaks, the leaks came from the same places.  I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak.  Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high.  She said she saw 2 spots she knows she would want to patch if my pressure drops again.

Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her.  That would put a bit of a kink in a trip to Tucson.

So I will drink many fluids, and stop avoiding caffeine so much.  (caffeine can raise your pressure)

Thanks for all the healing thoughts today, I felt them all.  Really, I did!  I think it’s amazing that so many people were thinking of me at the exact same time!  How Awesome!

One last thing  Other than my back hurting a little, I feel great!

That’s how the email ended…then later that night…

The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.)  It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.

Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.

Strangeness.

Found a cool article about it…it starts out “A decrease in cerebrospinal fluid pressure may result in an endolymphatic hydrops ….”  Well, that’s interesting.  The case study isn’t like my case, but it’s interesting just the same.

Now, let’s move back to my first arrival at the hospital…

When we arrived to check in we were told I had an appointment on the 17th, but not the 11th.  Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner.  The person at the check-in desk got on the phone, and we stood there and waited.  I started to cry, but think I hid it well.  She asked us to wait in the waiting room while she tried to find something out.

I broke down.  I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back.  I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else.  I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope.  (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)

Finally, they said I did have an appointment, but Dr. Gray was running late.  Very late.  My appointment was at 3pm, and they didn’t get started until after 5pm.  (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.)  But at least I got in there, and I know something now!

I’ll share with you the first doodle I did in the waiting room:

Little Miss Sad Mad
As you can tell this little lady (my inner self) was very mad!  Gnashing her teeth, sparks flying from her head…I wouldn’t want to be in her way!!  On the other hand, look at the eyes, they are very sad…poor thing so conflicted.
My next doodle was much more…well, just a doodle, but Dr. Gray saw it and just went on and on about how I was hiding being an artist…and how much she loved it…so I gave it to her.  She hugged and kissed me.  (maybe if I need another appointment, I will use a drawing as a bribe to get in sooner!) hehehe
I’ll keep you posted as my symptoms change.  (headache is barely there today!!!! and I’m not dizzy!  Woo Hoo!)
I’m sorry I haven’t been keeping up with my reading and commenting on other’s blogs.  I will try to catch up soon, I promise!  Hope it’s all good news.
Thank you all again, for the caring comments, thoughts, notes…ect.  It means more than I could ever express.

Oh What A Day!

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.  : )