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New to Community--here's my story

I have been a migraine suffer since 2000, and have taken several medications to reduce the frequency. (All have been unsuccessful) I have went to a Neurologist, and was told all was well. I began receiving abortive medications, since the migraines were so severe. In December, 2006, I slipped and fell in the entrance way at my employer of 17 years. The fall was extremely hard, initially I fell forward braced myself and the rug slipped out from underneath me. I hit my head to the point that had problems formulating sentences, and writing the report. I went to the approved, care center they sent me on my way. As a week or more passed, I found a Chiropractor, who immediately began treating me. He took me off work, I kept going. However, I missed a lot of work. The migraines were uncontrollable, when I didn't have a migraine my neck and head were excruciating pain-not to mention my back. After weeks of Physical Therapy, which seemed to make the migraines worse.:eek: I was sent for an MRI of the Cervical, which showed some newly ruptured disc's. The theory was that the ruptured disc's were causing the pain. I had a nerve conduction test, which was normal.

I had to hire an attorney, because my employer of 17 years decided not to allow me to retract my resignation (for better employment opportunities and law school). I was a Welfare Fraud Investigator, and was constantly in dangerous situations. I have been physically assaulted and worked long unpaid hours and was fearless. :mad:

My former employer are fighting my Workman's Compensation. The attorney and the Chiropractor sent me to a Neuro-Surgeon, who looked at the MRI and stated that he was not concerned with my disc's. He stated that my posterior fossa was to small, and that he believed that I had a Chiari Malformation. ??? Please believe that I am not a stupid person, but I asked him to spell it, and began reading. He gave me a type of steroid, and Diamox. He also sent me for a Gated Flow Study. He said that he wanted to see the results of this study before proceeding. I had the test administered, was looking at the results with the young lady and told her that he was concerned with a blockage. She told me that in her opinion, she didn't see one. Well, I thought that I was scott free! Went to the doctor's office--with my 11 year old son. He looked at the images in the hall, came in and immediately told me that my study was abnormal. He proceeded in telling me that the CSF was blocked in two area's, and that I needed decompression surgery. I thought that I was calm, and speaking intelligently. My son said, mom your shaking. Yes I was, uncontrollably. My former employer, a County agency is fighting my surgery. They have since postponed the Industrial Commission's hearing. I have been told that Chiari isn't always symptomatic until you have an injury, and I have also been told that these debilitating migraines was Chiari headaches all along.

Yikes, robertsgirl, the stress alone would send me into a tailspin.

But, welcome to NeuroTalk, and I hope you will find some answers along with the benefits of a supportive and informed community.

Feel free to post a thread or jump in anywhere, we'll see you around.:)

Here's a link to the headaches forum, you may find a good launching place here: http://neurotalk.psychcentral.com/forumdisplay.php?f=32

Quote:

Originally Posted by robertsgirl (Post 127490)

The attorney and the Chiropractor sent me to a Neuro-Surgeon, who looked at the MRI and stated that he was not concerned with my disc's. He stated that my posterior fossa was to small, and that he believed that I had a Chiari Malformation. ??? Please believe that I am not a stupid person, but I asked him to spell it, and began reading. He gave me a type of steroid, and Diamox. He also sent me for a Gated Flow Study. He said that he wanted to see the results of this study before proceeding. I had the test administered, was looking at the results with the young lady and told her that he was concerned with a blockage. She told me that in her opinion, she didn't see one. Well, I thought that I was scott free! Went to the doctor's office--with my 11 year old son. He looked at the images in the hall, came in and immediately told me that my study was abnormal. He proceeded in telling me that the CSF was blocked in two area's, and that I needed decompression surgery. I thought that I was calm, and speaking intelligently. My son said, mom your shaking. Yes I was, uncontrollably. My former employer, a County agency is fighting my surgery. They have since postponed the Industrial Commission's hearing. I have been told that Chiari isn't always symptomatic until you have an injury, and I have also been told that these debilitating migraines was Chiari headaches all along.

((((((((((((((((HUGS)))))))))))))))). First off, you were extremely fortunate that the chiro and neuro sent you to a nsg!! Most would never have seen the need. :rolleyes:

Second, as much as I appreciate the chiro sending you to the nsg, you cannot, cannot, cannot keep getting treatments from him. He will complicate the Chiari. Thank him and bid him adieu.

Third, that employer can kiss your @$$. :mad: You need this surgery, and if your symptoms are already bad, they will likely worsen without it, and you can die. I would hire an atty right away. Even the threat of a lawsuit can shut most of them up. Go with your nsg's opinion. He sounds like a gem. (Who is it??)

Good luck, and please let me know...

LIZARD :)

Hi Robertsgirl. You poor thing. I was initially going to respond with empathy for your migraines. I've been a migraineur since I was 19 - 40 years now. They are better than they were just since a couple of years ago, but I have taken many emergencie room trips for this horrible pain.

It didn't do me any good to take daily medication for my migraines. Abortives worked better and I finally narrowed it down to Imitrex nasal spray. It's the best for me. If I end up having to use 2 bottles, and the migraine gets worse, I know then an ER trip is in my future.

I know nothing about Chiari but did a search for you and will post some of that. You may also want to visit the Wormen's Comp forum and share your story there. Here is the link. http://neurotalk.psychcentral.com/forumdisplay.php?f=30

Here is a link to Chiari from the NIH. http://www.ninds.nih.gov/disorders/c...ail_chiari.htm

Another link I found that mentions Chiari and headache. http://www.thedailyheadache.com/2007..._malforma.html

Our own Chiari forum isn't very active it seems, but do post there as well. http://neurotalk.psychcentral.com/forumdisplay.php?f=71

Another Chiari site. http://www.chiaricare.com/

Also, as much as I know that chiropractors can be very good, I do not trust them with my neck! I have walked out of chiroprators' offices in more pain than when I went in. I'd hold off on any chiropractor until you know exactly what's going on. In my opinion, they could worsen whatever the condition is.

Here is that info I read with interest at one web site....

Quote:

A study published in the March, 2004 issue of the Journal of the American Academy of Nurse Practitioners has verified what Chiari patients have known for years; namely, that while some symptoms are common to many Chiari sufferers, the malformation also causes an array of symptoms which can vary widely from person to person. Indeed, one of the more common email questions this publication receives is asking whether X, Y, and Z symptoms are related to Chiari.

This plethora of Chiari related symptoms is not only a source of frustration for patients, but it is also a contributing factor to the all too often missed and delayed diagnoses that many patients endure. Both statistical (see Key Points #4) and anecdotal evidence show that many patients go through doctor after doctor, and years of suffering, before being correctly diagnosed. The varied, vague, and sometimes fleeting symptoms can make an early diagnosis difficult. This not only takes an emotional toll on the patient is who being given ineffective treatments, or being told it's all in their head, but some research has shown that the longer someone is symptomatic before treatment, the less chance they have of a good outcome.

In an attempt to help Primary Care Providers (PCPs) diagnose - or at least suspect - Chiari, Dr. Diane Mueller, a Neurosurgery Nurse Practitioner, and neurosurgeon, Dr. John Oro, undertook a study to examine what symptoms patients with MRI verified Chiari first talked about (or to use the medical term, presented). What they found was both encouraging for PCP's making earlier diagnoses and validating for every patient who has a laundry list of symptoms.

In the study, Dr. Mueller analyzed the self-reported symptoms of 265 Chiari patients who ranged in age from 12-78. The group included 221 women and 44 men. The size of the malformations ranged from 3mm-30mm, with most patients falling in the 5mm-10mm range. Thirty-seven patients had syrinxes, although not every patient underwent a full spine MRI. Interestingly, 3 patients had thoracic syrinxes, without the more common cervical syrinx. Also of note is that 3 patients were asymptomatic.

The encouraging part of what the researchers found is that 13 symptoms were reported by more than half the patients (see Table 1), with 98% of them saying they suffered from headaches. While the headache finding is not surprising, Dr. Mueller points out that the way Chiari headaches are usually described by patients is different than standard tension and migraine headaches. Chiari headaches are usually described as starting in the back of the head and sometimes radiating forward to behind the eyes. The pain is described as a feeling of intense pressure, or even explosive in nature, and is brought on or aggravated by straining (Valsalva maneuver), coughing, sneezing, posture, singing, laughing, etc. The study also noted that some patients had modified their lifestyles to avoid situations, such as singing or laughing, which would bring on the headaches. As PCP's become aware of the distinct nature of the Chiari headache, they should be able to make a diagnosis (or at least order an MRI) earlier in the disease progression.

The validating part of the research - at least from a patient's perspective - is the tremendous variation among symptoms. Forty-nine distinct symptoms were reported by two or more people and 95% of the patients reported 5 or more symptoms (see Table 2). As demonstrated by the extensive list, Chiari can affect many different parts of the body in many different ways. And of course, once the body is compromised for an extended period of time, secondary factors, like depression, come into play.

Often patients look for validation from their doctors that the symptoms they are experiencing are real and want to know if they're related to Chiari. Unfortunately, all too often doctors ignore this need and casually dismiss patient reports as if they were wielding a line item veto; related to Chiari, not related to Chiari, all in you head, etc. Given the results from this study, perhaps both doctors and patients should take a more holistic approach when dealing with symptoms. Patients should look inward for validation and doctors should take into account the complex nature and varied presentations of this disease and not try to categorize every symptom.

Ed Note: I thought it might be useful for some people to read about the varied symptoms that I enjoyed just prior to surgery, so that they have a real example of what this study demonstrates. Here are the ones I can remember:

Extreme headache especially with coughing, climbing stairs, etc; extreme neck pain; shoulder pain; weakness in right hand (hand started to curl up); leg weakness; balance problems aka walking into doorways; fullness and ringing in ears; hoarseness, trouble finding the right words (brain knew what to say, but voice didn't listen); trouble swallowing aka gagging on many types of foods; light sensitivity; frequent urination...You get the idea.

--Rick Labuda

Take good care, and I hope you let us know how it's going. :grouphug:

Quote:

Originally Posted by LIZARD (Post 127551)

Thank you! I am new to the diagnosis of Chiari. I have read every related piece of information regarding the topic. The disease and diagnosis is overwhelming. Can you please expand on the possible death information. From what I can gather, secondary disease from the lack of surgery was the most that I would face.

Any information that you can provide would be much appreciated. :hug:

Hello, Robertsgirl, welcome to NT! I am awful sorry you have to be here, though.

Try not to drive yourself too crazy over the "is it a symptom of my disease?" syndrome. That's easier said than done, of course! Most of us do it... but thankfully, NT is here to help. I use the rsd/crps forum to figure out what sx (symptom) I can blame on which disease (rsd versus aids versus epilepsy, lol).

It is greatly helpful to me... and to my dr. Debra is not an rsd expert, her specialty is aids. So she uses all the info I bring her to do her own research into rsd/crps. That way we both learn together, and that's a great comfort to me.

So keep learning all you can, and give that info to your dr. If he/she is not receptive to YOU doing research on your own, find a new one!! Any dr. that feels threatened by a patient who wants to "know it all" too, is NOT one you want treating you.

Quote:

Originally Posted by robertsgirl (Post 128236)

From what I can gather, secondary disease from the lack of surgery was the most that I would face.

Any information that you can provide would be much appreciated. :hug:

That's basically right, especially because you already have significant symptoms, and especially since the fluid flow is being interfered with. Persistent CSF obstruction causes compression of the brainstem and spinal cord and can result in inability to breathe, severe apnea, coma, and ultimately, death. This cannot be treated lightly!! Your employer needs to get that. It's not a breast augmentation or tummy tuck, for God's sake! :mad: :( (I'm so pi$$ed at that idiot employer of yours, all I can see is red! :mad: ) Since you already have fluid obstruction, your brainstem is being compressed, inhibiting its ability to do its job, which is controlling heartbeat and breathing, among others.

Good luck, hon'. I'm here for you. There are lots of sites, too. Let me know what you have, and I'll give you what I have. :)

(((((((((((((((HUGS)))))))))))))))),

LIZARD :)

Quote:

Originally Posted by LIZARD (Post 128735)

Well..I have Okay days, bad days and really bad days. Today happens to be a bad day. I just received information that I have a Hearing at the Industrial Commission on the 13th. The hearing officer will rule on the Chiari, or the exacerbation of. I have forwarded your information to my attorney Lizard, I hope that you do not mind. He has stated that Chiari, is way out of his league. I am sure that he has checked with other W/C attorney's, and Neurosurgeons..regarding the new information. The last time that I saw him, was in June. My employer asked for a postponement, regarding the Chairi. He made an off the wall comment, by stating basically all I was having was headaches. He also stated that after the surgery I would be just fine. I was taken aback, and explained more of the symptoms to him. I also explained that I would never be able to work in my field again. :boy(sad): He said that I could be a nerd like him. I am sure that he was trying to be comforting...:mfr_wha:
Well, law school was in the plan's but never a desk jockey.

Sorry to keep beating the same drum!

Does anyone have any information about limitation's in the labor market (specifically within the law enforcement field), with symptomatic Chiari, or Chiari after the surgery?

Life long struggle

Hi everyone! I am hoping by joining this community that I can learn about resources and information that is out there on Chairi Malformation. I have not been diagnosed with this yet but feel whole heartily that this answers the questions to so many mysteries for me. I have suffered from migraines since about age 7. My story is like so many others on here. I have suffered from so many things. I ended up having my first surgery just after turning 19 for a bulging disc in my lumbar. From there on it has all been down hill. I have been told by several doctors that I could not have numbness and tingling in my arms and legs at the same time. I have been told by a couple doctors that I needed to look at the psychological side of things and that it was in my head these symptoms. I have had stress test, heart caths, wore halter monitors, been hospitalized 6 times for A-Fib, multiple miscarriages, etc. I have to carry a list of medications, surgeries, and diagnosis that I have been given so that I do not forget. I have a friend who has had similar symptoms and she has been given the Chairi Malformation dx. Over the last two years I have gone down in health. I have problems with focusing and will lose track of what I am saying very easily. I sleep in a recliner more than in bed because I wake up in less pain that way. I lost 126 pounds with gastric bypass and still was not able to come off of the sleep apnea machine. My twin sister was able to stop using hers. I have trouble with balance and I could go on and on. I am going to see a neurologist on Thursday morning and my friend is going with me. She has no doubt either that I have this condition. I need answers and I need to know that I am not just some mental case. I also need to know the answers because my daughter is now under the care of a neurologist for headaches. She has had the migraines for the last two years. When we follow up with the doctor for her I am going to make sure she goes over the MRI with me and I want her to look specifically for the Chairi in my daughter.
The images that I have attached are actually from an MRI that was done in '08 when I went to the ER thinking I was having a stroke. I have recently seen the doctors notes and was shocked. The doctor said in his opinion that the cervical MRI was and I quote: "Abnormal MRI of the cervical spine without contrast. T2 hyperintensity seen centrally at the C6-C7 level, most consistent with small enlargement of the central canal vs syrinx. This measures 2mm in overall diameter." There has never been a mention of this to me and I only found out by tracking down my medical records. The other image reports on my Brain scan said, "Incidental note is made of signal abnormality located centrally just retro/posterior to the dermis of the cerebellum seen on the sagittal images. This is clearly identified on the axial image and it thought to represent a flow related artifact. When this is compared to the MRI of the cervical spine of the same date, this is more clearly identified and does appear to be related to flow than actual mass or tumor". "There is a mild enlargement of the pineal gland to the measurement of 8mm which may represent a small pineal gland cyst."
I was shocked to see these on the reports that were sent to my primary care doctor.
Struggling in oHIo

Hello robertsgirl

Welcome to Neuro Talk. There is alot of dicussion on this subject on the site. Tap in Chiari malformation on the search bar up at the top of the page. This will get you to that forum. Don't hesitate to ask away, any of the questions you have.
I am sorry that this has turned out to be a mess that you have to fight for your care. Its good to know you have a neruo specialist in your corner now. I also agree with the former post, don't go to the chiropractor unless your neuro surgeon would give permission for. Thank doc. however should be thanked for setting you on the right path to get help. Also the idea of a lawyer is a good one. I really hope this resolves quickly for you. You found a good site with lots of help and information. Again Welcome to NT. ginnie