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Brain & Nervous System Disorders Message Board

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Hi Scout~

There are many symptoms of Chiari. Many of us have similiar things and many are different. Here is my history of symptoms:

In my early 20's I began having tingling in my right leg. I was dealing with something very traumatic so my Dr was quick to come to the anxiety conclusion and I was given an antidepresant. Though my tingling persisted, I never went back because I assumed Lifes "stresses" continued as did my tingling.

About 4 or 5 years ago, I started having severe bowel issues with alot of pain. My dr sent me to a gastologist because he knows I don't complain unless theres a problem. All the tests they did, they found nothing, though my pain and severe constipation worsened. I know this is a personal issue but it was a big one for me. I had to use enamas to keep things moving. Why? They could tell me.

Then I started having severe heart palpitations. My blood pressure would soar, so again, my dr sent me to a cardiologist. Fatique also was getting bad. All I wanted to do was sleep and over exersion would put me in bed. So I really believed something may be wrong with my heart. I had every test they could possibly do and again, nothing. At this point, I could feel something was wrong but drs werent finding it.

Finally, the cardiologist decided that I may have sleep apnea. sure enough, FINALLY, they found it!! Sleep apnea can cause severe fatigue. So I had my answer. But, things worsened. The strange tingling now spead to other areas of my body. Now into my back.

I hadn't gone to a gyno in a couple years so off I went. Had a good exam, everything was fine so I fealt better. But I was getting weaker by the months. I started having cognitive issues and just simple tasks like making out my bills made me tired. I couldn't think straight.

Then my legs started getting weak as did the rest of my body. So I went back to my dr and he said that MS is something we should look into so he refered me to a neurologists. Had MRI's, fine. Then I had a lumbar puncture which was the beginning of my end!!

I got a headache, worse than you can imagine. I was in the hospital for 3 days on morphine and it didn't touch it. The pain radiated into my neck, shoulders and arms, down to my fingertips. They did a blood patch saying I had a spinal headache and sent me home.

Those headaches never left me. And because of the severity of them, that led to my chiari diagnosis. Once I learned about chiari, I realized that so many things that were happening in my body were not normal. I had thought everyone had these things but once I started questioning family, I found out that these things weren't normal.

!st thing I found out was sleep apnea is a common symptom of chiari. As well as bowel and bladder issues and heart issues too. It all started making sense. I have had headaches my whole life but I had always thought these were sinus related and popped tylenol a few times a day. But here are some symptoms I've lived with for many years, thinking they were normal;

Headaches that worsened when bending, straining, laughing coughing

head is sore to the touch, hurts to shampoo

Neck stiffness (I LIVED at the chiropracted for this, now finding out this can cause more damage to Chiarians)

Visual disturbances, light sensitivity, blurred vision

Pressure in ears ( I would think I had ear infections but my ears would be fine)

Sensitivity to load noises, ringing in the ears, decreased hearing

Dizziness, vertigo

Throat tightness, snoring, shortness of breath

tingling and spasms all over my body, prickling and numbness in extremities

burning pain in exremities, stiffness and weakness as well as pain

frequent urination, incontinence

crinic fatigue, memory loss, irritability

Numbness in face, head and tongue

Electric shock feelings all over

pain in head and neck when upright, eases when lying down.

There are probobly more that I've missed but the list is long. And some things come and go, some are steady and persistant and have worsened with time.

Some things are chiari related and some are from related disorders such as tethered cord and cranio cervical instability. There are other related disorders thankfully I have not been diagnosed with but not healing quickly is one that comes to mind. Bruising easily and hypermobility, like being double jointed as people call it, can be related to EDS, a connective tissue disorder.

I tried to give as many as I can think of but of course, my memory is not the best!! LOL I hope this helps.

Take Care

Hi Tina~

It is truly amazing how one LP can change your life over night!! I've never heard anyone else with chiari have that experience. Dr's have said the LP can mess with the pressure but this was a changing point in my life.

While they were doing the LP on me, something strange happened and it was like I was losing oxygen. The next thing I new, they were calling out my name. I finally came to and didn't know where I was. They were thinking I had some sort of seizure. It was freaky!! They refused to continue because they didn't really know what had happened to me. They claimed they didn't break through so I didn't need to lay flat after so I went home and the next day, bam!!

During my stay at the hospital the next few days, they did another LP before doing the blood patch. the pain was so bad in my head and it radiated to my neck and down my shoulders, to my arms into my fingertips. They were giving me morphine which helped my arm pain but never touched my head pain. I remember my neurologist coming in with someone he was training and he said "don't ever underestimate a spinal headache" Little did he know the damage it had done.

I had been experiencing MS like symptoms prior to the LP and always had a headache daily but had never even mentioned my headaches as a symptom because I was so used to it. A couple tylenol and I was good. But after the Lp, I am now disabled because of my head pain. If we knew then what we know now!! I'll never again let another person put a needle in my back unless they are aware of my chiari and can guarentee me that they can do it without causing more problems.

You poor thing!! That needle breaking off while they were doing the LP must have been so scary!! It sounds like this person was inexperienced and was blaming his inability to do it right on your excess weight. Weight definately shouldn't be an issue. I'm sure with the broken needle and all, they made a large hole in you. I had a second LP done the following day at the ER and the person doing it was shocked at the size of the hole the 1st one had left in my back. So I can imagine what they left you with.

All of your symptoms sound familiar to me. Its definately a difficult life dealing with all of this. So what are you going to do about the cerebellar slumping? Are you going to get a revision? You definately don't want to cause more damage by leaving it alone.

Hopefully you have a good chiari specialist monitoring everything. I hope you get some relief soon!!

Take care


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