Posted , 5 users are following.

So I thought I would add my experience to the forum for your information

I started having dizziness and balance issues again about 3 weeks ago. My surgery was back on June 2. I called my doctors office re: this. They BLEW ME OFF saying it is due to "recovering from surgery." I'm not buying this because I had a TOTAL ABSENCE OF ALL PREVIOUS SYMPTOMS and I refuse to believe that they would come back unless something was wrong, such as development of scar tissue, allergic to dural patch, leaking, etc. I have tried to research this issue and found pretty much NOTHING. 

So I was NOT HAPPY and called the Office Director and complained. She contacted the doctor's PA. Part of the whole problem is that the  Neurosurgeon who did my surgery went on a Leave of Absence immediately after my surgery. So I now have a new doctor who doesn't know me.   Anyway, they agreed to set me up with tests to see what is wrong. It took TWO WEEKS to get an appt. at Methodist because they only do the test on Tuesdays and they couldn't schedule the week of Labor Day.

I went in for the test at 7 am, put on the uniform, sat in a bed waiting to be tested. They made it very clear I would need a ride home and couldn't drive myself. I was rather curious about this, but just assumed they knew what they were doing.   I finally got dispatched to the testing room and was laying on my stomach and they told me they were going to do a Lumbar puncture to inject dye. Now, they did NOT do this before when I had the Cine MRI April 20. So I was suspicious. They asked me if I had any leakage out my nose, which I hadn't. The doctor who was supposed to do the proceedure called my doctor and came back and reported that they weren't going to do the test, which was a Computed Tomographic (CT) Myelography.

-{CT Myelography, sometimes called CT Cisternography, involves the  administration  via lumbar puncture of radioactive dye followed by CT scan.

Studies have shown that approximately 80% of CSF leaks can be confirmed through this technology}-

Apparently they decided I didn't need the test. So all I had that day was an MRI. Which showed NOTHING. So I called the doctor's office again and told the office manager that they didn't do the right test!!!

So the Physician's Assistant, Kristen called back and said there was all this confusion re: the test and they didn't know why it was cancelled, and someone reported that I hadn't shown up for the test....RIDICULOUS!! Anyway, I finally made Kristen Understand that I had never had CT Myelography previously. I had a Cine MRI. Big difference. So the test they planned to do would have no previous test to compare to. 

-{Cine MRI 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.

Cine MRI’s are ordered for patients to help doctors determine the amount of CSF flow through the foramen magnum. It can be useful in cases of “borderline” Chiari Malformations or when the question of whether or not decompression is needed is not readily answered using a traditional MRI. A radiologist can determine the amount of fluid that is moving and compare that with normal subjects.}-

So Kristen was supposed to get me scheduled for a [u]Cine MRI.[/u] No word from her Friday or Monday so I called several times and finally got through to the person who schedules tests. She said that Kristen had been struggling to figure out WHAT test [u]I was supposed to have[/u]. I told her I was supposed to have a CINE MRI. I had one on April 20- It should be in my records. She eventually found it and said she would get that scheduled. 


A- Why wasn't the DOCTOR involved in this convoluted mess of determining which freaking test I was supposed to have???

B- Why hadn't someone actually read my chart? So they would know what I'd had before surgery?

C- Why was someone at the hospital saying I wasn't there for the proceedure? (I actually called Methodist and they claimed they knew nothing about that). 

D- What are the qualifications for a Physician's Assistant?? Cause I'm pretty sure I know more about all of this than she does!!!!!  (I actually have some medical training in college- nursing- before I switched major to Psychology). 


....... to be continued.........

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8 Replies

  • Posted

    What a mess! please keep us updated. Does the lumbar puncture hurt?
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    • Posted

      The lumbar puncture I had last January wasn't that painful- what was worse was that there was some kind of CSF leakage and that leads to horrendous headaches so I was sent back in to have a blood patch to correct that. The headaches after that were worse than the original!

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    • Posted

      I had a lumbar puncture 4 weeks ago. It was uncomfortable. Compared to the headaches that I have on a daily basis i don't think the lumbar puncture hurt as such.

      It was a pretty quick process though and mine was performed by a specialist nurse. I think I was in and out within 20 mins.

      I did feel really sick for 2 days after and was a bit sore at the site. I didn't have a worse headache afterwards like some people usually do.

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  • Posted

    And in the continuing saga...discovered from a moderator on another forum that MRI Cine is not considered to be the best option for determine CSF flow. REALLY DEPRESSED ABOUT THIS and finally called Goodman Campbell and demanded to speak to my Freaking Doctor!!! Got a tad "emotional" on the phone and my doctor was very nice and said he was referring my case to the head doctor because he really didn't handle Chiari that much and the other guy knows more than he does. Cancelled my test Friday!

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  • Posted

    I had decompression surgery for my Chiari Malformation and after about the second week I felt something not right but couldn't explain it to my doctors. But then 2 years later I went down hill fast with motion sickness (I would get sick just sorting mail at the Post Office I worked at. Then I started getting car sick while I was driving. Then I started having balance problems. NONE of the doctors where I live knew the cause - I was misdiagnosed 4 times ! Then I went to a Chiari Malformation clinic and after 1 day of tests I was diagnosed with Tethered cord syndrome and the way I knew they were right were the in house testing they did such as having me walk on my heals after which I had to run to the batheroom to pee. They also did a specialized 3d MRI where they were able to measure my brain stem which was 5mm longer than normal. So I had the surgery for tethered cord and all the symptoms left except for the back pain. I hope this helps. -Jim

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