Ouch

Just ouch.


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Chiari Malformation Decompression Surgery 1 Year Post - Op Update

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Six Months Post-Op Update

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January 8, 2011 Chiari Malformation Decompression Post-Op Update

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Happy New Year 2012!

Happy New Year!
It is now January and I have been home since the middle of November.  A lot of things have happened since my last post. I had some rough times in the rehab and ended up in the E.R. twice.  I may post more about that later.  I am still in the wheelchair and may be starting to have problems again. My tremors are coming back as is some of the pressure in my head. I still have severe pain in my neck and head.  I believe I go for a 6 month MRI next month.  I am getting home health now with home Physical Therapy.  In October I started getting some "awareness" feeling in my legs where I was always aware of them.  It was uncomfortable and annoying.  That has since gone away.  They said it was a good sign that the connections in my brain were re-firing.  Now it's gone.  The Neurosurgeon said I will continue to see improvement for up to two years so I'm not concerned yet (much). I will try for more updates but as of now I'm pretty much in a holding pattern.

It's September!

I started experiencing a lot of pain a few days ago and they put me on Oxycontin.  Well, yesterday I had to go out to a Dr. appointment and my parents took me.  I started having trouble breathing and thought I was going to have to go to the ER.  I knew it was the medicine so I had them stop it.  The breathing got much better, but the pain came back.  As bad as the breathing was, it sure took the pain away.


It's Friday!  Yay!!! No therapy on the weekend so I get to rest.  I'm going to stay in my PJ's, eat M&M's and rest! LoL

I forgot to put up a picture of when the stitches came out on 8/24/11.  So here is a picture.  I'll try to get an updated one showing how it is healing.  This picture was taken the day the stitches were taken out AFTER having washed it (3 times actually lol) for the first time in 10 days!

Tuesday update

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Zipperhead

I'm a zipperhead. 16 staples and about six inches long.


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Video Update from the hospital

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Day after surgery

I'm in a regular room. I am eating well and rolling myself to the
bathroom. In some pain but not as much as expected. Already some
improvements. Less tremors. Less ear ringing. To early to tell for
walking. Exhausted now.


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Location:Hospital ICU

The Journey Continues Tomorrow!

The surgery will be in Little Rock which is about a 3 hour drive from my house.  We will be heading out tomorrow to stay overnight in a hotel.  Monday morning I have to be at the hospital at 9:30 for tests and then 11:30 will be my surgery (central time).  I'm not really nervous.  A lot of people are lifting me up in prayer, and that's a great place to be!  For those of you who know me, Mike E and Suzy will be getting updates from my parents.  You can contact them for info.  It will probably be a couple days before I feel like posting.
Brenda

Almost Ready

Well, time is passing quickly until the surgery.  I've gotten my hair cut in a reverse wedge.  I've had shoulder length hair, but I just don't want to have hair stuck to my incision area.  Tonight a group of friends is having a prayer service for me.  I'm very thankful for them.  Tomorrow I label my clothes for rehab (you have to have your name in them) and get everything together.

Gettin' Nervous

Surgery is coming up in about a week and I'm starting to host a butterfly convention in my stomach. I have faith in God and the doctor (who is also a Christian) and am glad for the surgery. I just wish it were about November right now.


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Surgery Date Set!

I saw the neurosurgeon in Little Rock on the 12th.  He came in the room and started asking me about symptoms and asked if I had been tested for a couple of things that I had been, and came back negative.  He nodded and then began telling me about the surgery.  He said he had never heard of a chiari patient getting back to 100%.  He said they also don't completely get rid of the headaches.  He said the most we reasonably expect 65%.  The main issue is the surgery should stop the progression of problems.  The last few weeks my arms have been getting weaker and numb.  The headaches have intensified and I just feel worse.  He scheduled surgery for August 15.  He said I will be in ICU a day or two and then in a room a few days.  After that he wants me to go into rehab in Little Rock for a few days and then be transferred to another Rehab hospital to try and get me back to walking.  I'm hoping 65% means I can walk without a wheelchair or walker.  A cane would be OK, but I'm going to work toward totally walking without any aids.

This morning my original neurosurgeons nurse called to tell me he had decided he wanted me to have surgery and she was calling to set up a surgery date.  He hasn't seen me in over a year and suddenly he decided surgery was a good idea.  I'm thanking God that call came after I had seen a good Chiari specialist.  His timing is not our timing and His timing is perfect.

Here we go again...

A long ride to Little Rock tomorrow to see a new Neurosurgeon.  He is supposed to be a chiari specialist.  I've got copies of all my mri's and filled out the necessary paperwork.  I pray he can  do something to help me.  I dread the trip and hope I don't overwhelm him with symptoms, but if I don't tell him he can't know what is going on (was that deep or what?).

Audio update 6/2/2011

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Neurologist Appointment

I saw the Neurologist today and he agrees with me that I don't have MS and my problems are being caused by the Chiari.  He says no further testing is needed.  He is sending me back to the Neurosurgeon.  This is progress.

CINE MRI Results and More

I received my CINE MRI results today and according to a radiologist friend who looked at it for me, my brain stem is compressed and there is lack of the CSF flow posteriorly (from the outlets of fourth ventricle).  These are all caused by Chiari and can cause the symptoms I've been having, however, it also showed "small punctate areas of increased signal".  It went on to say that they can't rule out Multiple Sclerosis, but because contrast wasn't used in the MR study, it could simply be artifact.  So my neurosurgeon is sending me to a neurologist to rule out MS.  I will go see him tomorrow.  I have looked up MS and it's symptoms and I do not believe I have it.  I hope this doesn't lead to more tests.

CINE MRI

I had my CINE MRI under general anesthesia today.  Everything went fine.  I don't know the results yet. I am writing this blog via email and will edit it later.  I'm home now and resting.

... Or Maybe Not

I got a call today from my NS office that they want me to do a Cine MRI.  This MRI has to be done in a closed machine, not the open MRI I had the other ones in.  The nurse told me she called the hospital and they said they can put me under general anesthesia to do it.  I'm very relieved about that (even if I do feel like a wimp because of it).  I will have this one done next Friday, April 29.


For those wondering what a Cine MRI is, here is a definition from The American Syringomyelia & Chiari Alliance Project 

• Cine MRI (as in cinema) is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patient's chest to measure the heart rate. Each time your heart beats, the cerebrospinal fluid is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of the cerebrospinal fluid (CSF) as it is moving.

I am glad they are still working on this.  Maybe it will lead to an appointment with the NS soon so I can talk to him about the symptoms.

Finished the MRI's!

I did my last MRI yesterday.  Due to my claustrophobia that was quite a feat!  I spoke to my NS nurse today and she said the doctor will be looking over the studies and then they will let me know if he wants more (oh, please, no) or if he is ready to see me.  I know my rheumatologist has been talking to him and trying to get him to work me in sooner.  They made a tentative appointment for August but my rheumatologist didn't want me waiting that long.  I do understand though that he couldn't tell me much without seeing new MRI studies first.  So now it's a waiting game.


I had my second physical therapy session today.  It is a lot harder than I remember.  It has been a month since I did PT.  I'm in quite a bit of pain now and had to take a pain pill when it was over.  The physical therapist left me with some exercises to do on the days he doesn't come.  I guess he will be coming twice a week.  I'm glad it's no more often than that because I'm not sure I could handle it.  The straining puts a lot of pressure on my head and makes the headache and neck pain a lot worse.  I'm hoping the therapy is a good idea at all and is not making things worse.  I will be seeing my rheumatologist on Tuesday and will ask him his opinion.


I'm still waiting for my power chair to arrive.  That should make things a lot easier.


So.... now I wait... again....

What Chiari Is and How it Affects Me

There are many websites that you can search and find all the medical jargon you want about ACM1.  I'm going to give you the "plain english" version.  In simple terms, people with Chiari have skulls that are not large enough for their brains (or brains that are too large for their skulls)... This causes pressure in the skull and makes the brain herniate down into our spinal canal, which in turn puts pressure on our spinal cord and brain stem.  It is this pressure that causes our symptoms.  Just like with any hernia, physical stress will cause symptoms to be worse.  Sneezing, coughing, laughing or straining will make me feel as if my head is going to explode. 


There are many symptoms reported with Chiari.  Here is a list of my symptoms:

• Headache/Neck Pain
• Tinnitus
• Fullness/Pain in my ears
• Nystagmus (involuntary eye movements)
• Blurred Vision
• Balance Issues
• Dizziness/Vertigo
• Breathing Difficulties
• Swallowing Difficulties
• Drop Attacks (falling for no reason)
• Muscle Weakness & Pain
• Gait Problems (unable to walk)
• Memory Problems/Difficulty Finding the Right Words
• Hand Tremors (thank goodness for spell checker and backspace) 

 The original symptoms that had my doctor sending me for the MRI was nystagmus and severe headaches.  It was the MRI that showed the Chiari.  My Chiari is 15mm.  That is the length that my brain is herniated.  15mm is a large herniation, though they say size doesn't matter... it is symptoms.


Here is a picture from my MRI.  I have drawn a white line to show you where the brain should have been contained.  You can see the part that is herniated down past that is putting pressure on the spinal cord.

When my ACM1 was found I was referred to a Neurosurgeon who is a specialist on Chiari.  I had a very long visit with him and we decided at the time (one year ago) that I did not need surgery.  In the last 4 months my symptoms have become much worse and I am now unable to walk, perform anything that requires fine motor skills, and I have pain all the time.  At the time my doctors suggested my problems were related to my lupus (I have SLE) so they suggested I go to an inpatient physical rehabilitation facility. I was there for 3 months while they tried to get my muscles built up and get me walking again.  It was towards the end of that 3 months that my rheumatolgist (I also have lupus) suggested that perhaps my worsening symptoms were due to the Chiari and not lupus as we had originally thought.  He then called my neurosurgeon to request that he see me again and reevaluate the situation.  The neurosurgeon said before he sees me again he wants me to have more MRI's.  They scheduled 3 days worth of MRI's and so far I have completed 2 of them.  Once he sees them they will make me an appointment.  My next MRI is a thoracic MRI on Wednesday at 1pm.  I am extremely claustrophobic and hate those studies!

Welcome To My Chiari Journey

This is the first of (hopefully) many posts about my Chiari Journey.  I was diagnosed with Chiari in April of 2010.  I've had quite a few problems due to this condition and have searched the Internet finding very little information on the real life experiences of people with Chiari.  I decided to start this blog for 2 reasons.

1. To provide information for other people suffering from this condition so they can learn from my experiences.

2. To keep my family and friends updated on my condition.


I hope as you follow this blog you find the real life information that will help you in your own "Chiari Journey"