Chiari 1 Malfunction. Bunch of questions

[RicardoSanch]

Hi I'm new to the whole Chiari 1 malfunction world as I was barely told today that I had it. Something that was a shock to me at first but definitely explained a lot from stuff that happened in the past. My question tho is if the malfunction can increase or get worse over time and how much and how fast? The last 3 weeks have been very tough on me as I seem to have a new symptom every day changing up. It's also important to note that I smoked marijuana three weeks ago that cause severe panic attacks and left me pretty bad and was the reason for me to go to the doctors in the first place. I have good days and I have bad. But I'm just worried that if my condition will get worse each day I don't treat it. Thoughts? Thank you.

[joeythecoffeedrinker]

Hi Ricardo, I'm new to this forum as well but, I have Chiair that has gotten worse over time, caused by blunt trauma to the head. Twice. 2 MVA s In my extremely disoriented state I was so extremely fortunate to have Neurologists/Neurosurgens, steer me away from brain surgery. I've done extensive research on Chiari and I continue to not find Amazing results from surgery.  Re: Marijuana I stopped smoking it in my early 20s when my symptoms started, I would get worse headaches and vomit. I was told then it was in my head  - and well it was confirmed years later after multiple car accidents.  I wasn't anti drug but I was pro holistic at the time. I would finish school I have and then some. Continue your life just make modifications. Add coffee for the intense headaches, find a compassionate Chiari educated Doctor. Our symptoms suck, it effects our motor control, balance and if the CSF isn't flowing properly it leads to headaches. Do not let a doc jump straight to surgery. Get the necessary tests first see how much it's progressed there's another test to check the CSF. Stress is a huge factor causes more trouble. I currently take pain medication as well as diazepam. If you are new to narcotics , check out youscript.com it helps you understand how you personally metabolize meds, so trial and error are eliminated, I've suffered a great deal due to ignorance & greed alone. When I had 0 to my name I slept with a tennis ball under my neck to allow the flow of CSF. High levels of pain make your body do crazy things. If you can manage your symptoms with appropriate medication, and know your limits, you will be able to avoid surgery. It truly depends on how the Chiari s progressed, how it's decended. I've found that the conquer  Chiari website awesome to understand this. Most people including doctors have no idea what it is. I was born with it, had symptoms in my 20s in an MVA in my late 20s hit my head lost my memory, they thought id never get it back, music played a huge role in getting it back, had spine surgery for those injuries and got hit again, so I made friends with my pain, and it boils down to finding good compassionate doctors who are educated and not quick to cut! Rest no pot, alcohol has to go as well the headaches aren't worth it. Toss fear in the trash if you can. The more restful you are the least symptoms you will have. Has your sneezing started? What did your MRI say? Hope that helped # screw fear

[selmaS]

  Ricardo the best thing you can do is listen to your body, if you do something and experience more symptoms then it is something you should avoid....use the list as a guide, but your body is the main way to know for sure.

Try to relax...the good days remember to not over do it as that is when we have a string of bad days that follow...since Chiari cycles it is typical to experience this .

Sure, it sounds like a good starting place...try to go to bed at the same time each night to help ....when reading keep reading material at eye level...do not look down...same with writing....use something to elevate your paper so it is higher and you are not bending your neck to look down...do not carry heavy books get a book bag with wheels....and you may want to try tinted glasses as florescent lighting can cause use issues...

Good luck and let us know how it goes.

[selmaS]

  Try to relax as stress and anxiety can make your symptoms worse.....we do have a list of activities to avoid.....http://www.medhelp.org/posts/Chiari-Malformation/Activities-to-avoid-with-Chiari/show/1744053

The main thing is listen to your body on what you should or can do.....

Next educate yourself to ALL related conditions as well as to Chiari.....and research NS's to find the right Dr for you.

[RicardoSanch]

Thank you! It's just hard since I barely found out yesterday that I had Chiari. I'll educate myself more on the condition and others related to it and see what I can do. Is there anything I can do to reduce it or help it? I have to go back to school today I go to college six hours away from home and I'm just afraid that if something happens I won't be close to my family to help me and I was wondering if it was even a good idea to go back to school and finish the semester? I have about a month left of school and everyone knows that finals are coming up and can be the most stressful of times for college students, especially myself who kind of fell behind while being home dealing with chiari. I know in myself I can do it and I'm good. Like I have great days and I have bad days. There are times I feel great and amazing and times I just feel horrible throughout the day. My plan is to go back to school for a week and see how it goes and write down all the symptoms I feel and how I sleep and all and telling my doctor to see how to go from there. Sound like a good idea?

[selmaS]

Hi Ricardo and welcome to the Chiari forum.

First, Chiari malformation is a malformation of the skull....this leaves an area of the skull too small for the cerebral tonsils to fit, so they are forced out onto the spinal cord and or brain stem .
Chiari symptoms cycle and change and can be triggered into a flare depending on your activities or being sick, a cough, laugh, sneeze,basically any thing that causes you to strain....and stress and anxiety can also trigger a flare

If you are asking if the herniation can grow....yes it can....how fast...depends on you and what is going on and the type of CSF flow disturbance you may have.

Smoking anything will cause blood vessels to shrink making it more difficult for fluids to flow, which in someone with Chiari is already a problem....this is why when we strain or do certain activities we have symptoms flare as the fluids get blocked and can not get to the areas fast enuff we feel the effects.

It is possible to get worse, and it is possible you can go a long time and feel fine, then get it all back..

May I ask what other symptoms you have had?
You definitely need more testing to rule out related conditions, and to see if you have a CSF obstruction.....

[RicardoSanch]

Thank you for answering. The symptoms I get are headaches, neck pain, trouble swallowing, twitches and muscles movements,fatigue, trouble sleeping or going back to sleep, anxiety, dizziness, stomach pain, weakness in muscles, pressure in brain. Most of these symptoms have happened or increased a lot over the weeks. I've had an MRI and seen my neurologist who showed me my brain and where the problem was and why and that I needed surgery. I was just so scared and shocked I forgot to ask him more questions like how big it was and if it was growing and what I could and couldn't do. Like can I still massage the back of my neck or are there other ways or medicine to help or excercises or eating habits to have to help? Do I sleep a certain way? Do I walk a certain way?