Scared! Recently Diagnosed, agressive progressing symptoms!

General
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First off, Im so happy to have found this amazing little community, and already feel a sense of relief reading your posts! Here goes!

I am a 26 year old hair stylist and mom of a 6 yr old and 4 yr old twins, and have always been a high energy, motivated, mind over matter person, but my world has come to a halt this last month. In the first week of march, the slight headaches ive always had at the back of my skull became unbearable and wouldn't go away. The same week, I woke up one morning with Bells Palsy. I was told by the ER that headaches were common with Bells, and to follow up with my regular doctor within a few days. I did, and explained to her that the headaches were debilitating to a point that I didn't even CARE that I didn't have function on one side of my face. I was told that the intensity was NOT common with Bells and was then sent to see a Neurologist and ordered a MRI.

In between the time of this, I started to become dizzy at times and vomit with the headaches, and could NOT find relief with medication. About the same time, I started to experience a tingling numbness in the middle of my back near my spine and my blood pressure was on the rise.

The MRI came back as Chiari 1 malformation, tonsils hanging 11 mm, and that there was "crowding at the medulla (sp?)" I am now scheduled to see a neurosurgeon at the end of this month.

My biggest concern is that I have a constant headache that aches, but the "pressure attacks" I get are on the left side of the back of my skull, and come on randomly and bring me to my knees and tears DAILY. If im driving, I have to pull over until the stabbing pressure subsides. The dizziness and vomiting aren't even as bad as these "attacks".

Im scared to death because this came on all in one months time, and seem to be SO aggressive with the progression of symptoms. I have become someone that I am not. I am depressed, exhausted and struggle everyday to live a functional life. Sometimes even getting threw making dinner and baths at night are a struggle. I am lucky to have a husband that is helpful, but wondered if anyone else has had this agressive symptoms or is it more normal for them to come on gradually? I cant at this time imagine NOT taking medical steps to alliviate these heachaches, as it has changed me littereally in ONE MONTHS time. I have only heard of BAD expierances with the decompression surgery, and my nurolofist is not a fan of the surgery. thoughts are so greatly apppreiated!!!! Love to alll!!!!!!! -ShawnDell

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ShawnDell,

First off, welcome!

Secondly, don't be scared by your Neurologist's (NL's) opinion about decompression surgery. Virtually everyone here agrees that NL's are not helpful in Chiari treatment, as Chiari is caused by the physical blockage of your Cerebral Spinal Fluid as it enters and leaves your head. There is not a pill that a NL can prescribe to fix that.

Personally, I also had rapidly progressing symptoms. You are not alone. I went from having minor headaches to being so sick I was homebound in about 4 months. My NL really tried to help me, but nothing was making me better. She also strongly discouraged me from having the surgery. I decided to see a Neurosurgeon (NS) anyway for a second opinion.

Most people here have found that NSs are far more knowledgeable than NLs when it comes to Chiari. There is also a special subset of NSs who are Chiari specialists, who you should strive to see (there is a list in the DOCTORS link above). It makes a difference. My decompression took away 99% of my debilitating symptoms.

Even if the NS you see doesn't think you need surgery, chances are they will be able to help you, or at least track your progress to make sure you don't need surgery in the future.

We also have a group called SUCCESS STORIES, if you want to feel a little less scared about the surgery. Most people who still are here talking about their Chiari either have not had the surgery or are not feeling as good as they want to yet - many people who are still having issues don't just have Chiari, and it complicates things. We still need support, so here we are in our wonderful support group! : ) Another reason for bad Chiari stories is surgery done by people who are not Chiari specialists. It is a delicate procedure and this is why we keep a list of recommended doctors from members who have actually had surgery from them. Its invaluable.

I hope this helped!

Donna

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Welcome! I'm sorry you are going through such a hard time. I know you read a lot of scary stories about decompression online and it is a serious surgery but the truth is that most success stories are out living their lives and don't feel that they need as much support from forums like ours. I agree with Donna above, neurologists in general aren't much help with Chiari and will try and tell you to just live with it but it's not easy when symptoms are debilitating as you describe.

I consider myself a success story. I had my surgery October 15, 2012. Prior to that point it was struggle to get through a day at work and at home I basically stayed in bed all the time. I couldn't do any of the things I enjoyed. Since my surgery I have gotten my life back. I work full time, in the evenings I am able to cook dinner and do chores. I exercise almost daily with jogging and weight lifting (there are a few moves I avoid just as a precaution). On weekends I take long hikes on local trails. I am able to go out and socialize with friends. I still have some neck strain or muscle spasms if I overdo it it's easily manageable.

Feel free to ask my any questions and I'll help however I can! :)

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Shawndell, I am so sorry to hear that you're going through such a hard time! I'm sending prayers for you! I also had a sudden onslaught of symptoms. I never had headache issues or migraines until a year and a half ago! I was sitting with a group of people one day. All the sudden, I lost part of my vision. My head filled up with pressure and I didn't get my vision back for 30-45 minutes. A half hour later, I had my very first migraine. It was excruciating! I ended up going to the hospital a few days later. They thought I might have had a stroke, so they kept me overnight and ran a bunch of tests. They found out that I had a 7 mm herniation, and diagnosed it as chiari. Since that day, my life has changed dramatically. All of these symptoms started out of the blue. I have had fibromyalgia for a long time, but this was totally different. I can't be around bright lights, loud noises, bad smells, I can't overexert myself. I have to basically hibernating in my house, with the curtains drawn. YOU ARE NOT ALONE. This seems to happen a lot to us at our age group. I'm 35 now. I'm here for you if you want to talk! You can contact me through here. Hang in there honey!! We'll get through this together!

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Its a mazing how being snapped intoa new way of life makes you aappreciate others even more then before. That you all so much!! Kmelodya your so sweet and I’m so sorry you have even more to deal with!! Let’s keep in touch and chat when we both get time!

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