Aa
A
A
A
Close
Chiari Malformation Community
5.19k Members
20873519 tn?1556339871

Symptoms for 15 year and getting worse.



I started having my first symptoms back in 2004. One thing that was specific about that year was I was in a terrible car accident that I ended up getting whiplash. I started hairdressing and I first noticed migraines that were always in the back of my head. Then I noticed my balance was off.  Those were my first initial symptoms. I started going to doctors and they would run labs everything would come back normal. I had a heart monitor test. I had a echo cardio gram that detected slight regurgataion of my tricuxpid valve. Then I started noticing visual changes I could not focus like I used to. If I bend down to long I get pressure in the back of my head and a tight stiff neck. I made them give me a cat scan. They said it came back normal. So I got a copy and read it myself.  The only thing off in the report. It did day on there that there was insufficient cfs.flow? I don't know what that means. Then I was still complaining ofcouse they thought this girl must be mentally unstable I even questioned it myself. So I started thinking maybe this is all in my head aswell.I insisted something was a miss so in 2008 they sent me to a neurologist and he took stays of my neck before I got the results he up and left practice just days after my appointment. At that point I gave up. Since then I sucked it up dealt with my symptoms and worked through them. Now they are getting worse and I am scared. I notice a cessation of stop breathing I sleep. I notice balance is getting worse and pressure in back of my head. Visual focus is worse. My memory is worse. I now get tremors. I get tingling and numbness. It feels like pressure on my occipital area. When I turn my neck it makes weird noise. I am only 35. This all started on my 20s. I have looked up things on my own of course havi g no i insurance and being scared with 3 kids 2 are toddlers. I looked into chiari thinking that just maybe this could explain this because I have to avoid any activity that hard the back of my head and neck because of it cause a tightening pressure. Also 3 months ago at the dentist he made a statement that I had an odd shaped skull. I thought that was unusual statement. Thank you in advance Trace


4 Responses
Avatar universal
Your symptoms and the observation of diminished CSF flow are consistent with a chiari malformation. An MRI of the head and at least neck would verify the diagnosis. In a perfect world, they would specifically do  a CINE MRI to measure CSF flow at the same time, but they may not be willing to do that without knowing that something like a chiari may be at play here.
9 Comments
Thank you for replying.  As soon as I can get insured i am going to insist on a MRI with contrast. I just finally want an answer .
I know the feeling. While finding out you have a chiari malformation leaves a lot to consider and calls for certain changes in your lifestyle, it also brings a lot of emotional relief to just know what is going on (not to mention guidance on what you can do to improve your wellbeing moving forward).

I've been symptomatic probably since my early teens, but certainly by some point in high school. It wasn't until I was 32 that I got a diagnosis. And now, 10 years on from my diagnosis, I'm arriving at a point where I'm looking at surgical intervention.

It definitely helped to have that diagnosis a decade ago to help me avoid at least obvious activities that would worsen my case. I'm sure it helped to give me this extra decade before needing to consider surgery.

Though I must admit I was far from perfect during those 10 years, and probably could have delayed this further. :)
Wow. You went years also with no diagnoses.  That is the scariest part not being sure of what exactly it is.  I had no choice but to try and diagnose myself because of insurance and doctors were chalking it up to mental illness. I unlike most of you have no idea if it is chiari or not. I just wish I had answers.
check with your local hospital wherever you live and check on the financial assistance that's what I had when I had my surgery it takes a minute but if you get all the proof that you don't have insurance if you're not working or don't make enough check that out it may help you mail if it comes down to you have to have surgery like I did my flow was about to stop
I am scared to do that. It may be years before I get diagnose if I have it.Doctors don't know what chiari is around here.  
May I ask you guys your symptoms before diagnosed?
My diagnosis was incidental. The reason I got my MRI of my head at the time was to look for inner ear issues related to tinnitus.

However, once I heard about the finding of a chiari malformation, I researched the topic and realized I had been dealing with a number of chiari symptoms since my teens, such as:

1) short lived (maybe 4 minutes max) throbbing/pounding headaches at the base of my skull, which were triggered by doing things like coughing too hard, laughing too hard, straining to lift something very heavy, etc.

2) I would develop these tension type headaches by sleeping with my head propped too high on pillows, or looking down to read a book for too long.

3) Since my teen years, I have dealt with a fine tremor in my hands. My doctor at the time diagnosed it as an essential tremor, but it has become clear to me over the years that the severity of the tremor is closely related to the severity of my other chiari symptoms.

4) Regular bouts of what I call fog brain. One day I would be clear minded, speaking with no impediments, the next day I would feel fog brained and would struggle to pull forward words, phrases, names I knew well.

5) Bending over for a long time, especially strain ing while lifting something or working on something while bent over would at a minimum make me feel short of breadth, but often make me feel like I could hear my heart pounding in my head and make me feel like I was going to pass out.

6) Migraines.... Maybe related

7) Finally, tinnitus crept up as a problem when I was 32 years old, and issues related to that tinnitus resulted in me getting the head MRI that found my chiari malformation.
Thank you. I also have pressure in back of my head from looking down to long. I know exactly what your talking about. I have hours of tinnitus.  Thank you so much. I am so scared of other underlying diseases being the cause. This information is very helpful . Thank you so much
Matt I too get the shortness of breath and dizzy feeling when bending over and straining. Our symptoms really are similar. Trace I know exactly what you've been through far as no insurance goes.. Its so hard to get anything done.
Avatar universal
Chiari both blocks CSF flow and decompresses the cranial nerves, and these two are the main culprits to all the symptoms that we face.  Your symptoms sound so familiar, and I had gotten so bad that central and obstructive apnea made me stop breathing up to a minute at a time all night long.  Five-hour long decompression surgery in the US saved my life, but the relief lasted only about 4 weeks and the symptoms came storming back.  Then I had 45 minute filum terminale dissectum surgery in Spain, and now some 3 years later I am out of the bed, helping my wife raise children again, running the household and hoping to serve others.  I do a little bit of safe inversion therapy daily (imagine standing, but leaning down while reading a book) and this allows relief from apnea and provides restorative sleep.  Like a diabetic takes insulin daily, I will do this easy, same inversion therapy daily.  Gone are: headaches, peripheral neuropathy, tachycardia, scary bradychardia, cognitive lapse and fog, neural constipation, back pain, numbness in foot,.  Almost gone are: apnea, insomnia, ear sensitivity (high pitch voices), photophobia.  I still deal with fatigue, but I sleep well about 6 nights a week, whereas before the filum release: NEVER!  Do your research on the filum terminale dissectum (filum terminal release).  Three US neurosurgeons perform this: Heffez in Wisconsin, Henderson in Maryland, Bolognese in New York.  I traveled to Barcelona, Spain in 2016 and had the surgery by the doctor who discovered/perfected it: Dr. Miguel Royo-Salvador.  God Bless!
1 Comments
Thank you. Yours sound a lot  like my symptoms. Without insurance I thank god every time I awake in the morning . It's hard not knowing if this is the problem causing my symptoms but there is definitely a similarity in symotoms. It helps talking to people that have also similar symptoms.
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am so hapy that others were able to give you some information while I was sick......I do want to tell you they do some clinical studies and it is worth looking into if there are any you qualify for.....Chiari related that is.....look up on the NHS site . If you need more info let us know.

I also want you to look into having a sleep study done....you may have sleep apnea which is not uncommon for someone with Chiari. It is VERY IMPORTANT that you have this checked ASAP since you already are having issues.

I also find it odd they were able to see a reducing in CSF flow on a cat scan....they typically need to do a CINE MRI to check flow.....again something you will need to look into as well as a full spine MRI to see if you have any syrinx's.....

I know how scary this is, and I am glad you found the forum here and I hope I can be of more help to you.
1 Comments
Thank you so much. Maybe I will look into that. There is not much I can do at the moment with no insurance.
Avatar universal
Hi, this could be several things. Nerve pinching, fractured disk, yes possibly Chiari. Chiari could be hereditary or caused up on injury. The sad thing is even if you had money for an MRI you still need a script.  Asked for an MRI, versus the scan. MRI picks up more. I would get some insurance (Individual, or the shared Christian plan on line) and have doctor get you a script. Find a price, negotiate cash price, it is often cheaper than going through insurance and paying it through your deductible. Do you have medical insurance through your auto or the person that hit you?
1 Comments
The car accident was 15 years ago. Could nerves be pinched that long? I do have car insurance or is new.. the car accident was my fault. I turned to look at my son and ran into cement barrier my sister and nephew were life flown. They are alive and doing well. Thank you for your response.
Have an Answer?
Top Neurology Answerers
620923 tn?1452919248
Allentown, PA
987762 tn?1331031553
Australia
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease