Aa
Aa
A
A
A
Close
1144229 tn?1293437082

Hello new 37 with Chiari one Malformation

Hello,
I am not sure where to begin, but here goes....

Im a 37 year old male, for the past 8 months I have had severe headaches ( terrible to say the least)...
   8 months ago I had a abscess tooth that had become overwhelmingly painful (so I thought), I saw a dentist, and had this molar pulled, surgical extraction.
After the proper amount of healing time I had gone back to the dentist, still having a bad headache from what I thought was a tooth ache, the dentist saw another molar that could be causing this pain, after a round of antibiotics, the dentist pulled this molar.
  Needless to say this pain that was at the base of my skull that progressed over the top of my head got worse.
I set a appt. with my GP, he suggested that I take some pain medication, this helped a little, he also prescribed some muscle relaxers, these did nothing, I called his office in tears, explaining that this headache was 5-10 times worse that the abscess teeth issues I have had in the past, noting that this headache that starts at the base of my skull is terrible that it keeps me from going to work, it s purely the worse pain I ever felt.
  He scheduled a MRI, and informed me He was afraid I could have a abscess on my brain or brain stem.
  I had the MRI,it was a brain scan and a C-spine....
1 week later I went to see the GP he explained that I have DDD, and 2 large cervical disc herniation's, sent me to a neurosurgeon, who asked to have the MRI CD, I got that for him,
  THEN THE SCARY NEWS STARTED........
   He stated I have 2 cervical disc herniation's and DDD, that need fusion, upon reading the MRI while I sat there,
He told me I will have to see a Neurologist that I have Chiari One Malformation......
He had to leave right away to the OR he had a patient with a 911 issue...
   Me and my wife left his office, and here I am, nervous confused in extreme pain.......
I don't know what to do,if there is anything I can do...............confused and upset
anyone with any common experience please reply.......please
...............in distress awaiting some insight.......
23 Responses
Sort by: Helpful Oldest Newest
1041839 tn?1278681846
LOL yep that fits! I need a shirt that says that lol
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
WARNING

CONTENTS UNDER

PRESSURE  
Helpful - 0
1041839 tn?1278681846
ok tell me what it says cause i cant see it on this stupid phone lol
Helpful - 0
1144229 tn?1293437082
thanks........

I got the idea from a book about CM1....I thought it was a great example.
Helpful - 0
999891 tn?1407276076
LMAO cool pic and very appropriate....
Helpful - 0
1144229 tn?1293437082
got it.I had no idea.....see my profile photo??......russell
Helpful - 0
999891 tn?1407276076
go to your profile page and click on message inbox
Helpful - 0
1144229 tn?1293437082
hey Shannon, I don't know how to get a message......really I don't.
Im gonna check now though...russell
Helpful - 0
1041839 tn?1278681846
hey russell i sent you a message just want to make sure you get it!
Helpful - 0
1144229 tn?1293437082
I figured n a lighter note, here is a bit of my Tattooing to check out, this is what I did before all this mess.....
http://www.rptattoomachines.com/tattoo.html
Helpful - 0
1144229 tn?1293437082
selma,
I live in Jackson , Mississippi........

   I and the NS, are scared that the cervical disc herniation (ruptured)...
If he does the surgery to fuse these 2 disc, will worsen the CM1 condition...
  This makes sense, because of obvious pressure issues.
I suppose for now I am his, and a neurologist's mercy.
    thank you guys for the information and help...
  2 years ago my wife had breast cancer, there are people who help, and study's that are done daily about breast cancer.....unfortunately there isn't about CM1.
     I wish my head wouldn't hurt so bad, and that I could get over this pain, and enjoy life again.
This headache has been terrible for 8-10 months, pain medicine hardly changes it,It sort of keeps my mind off of the headache, is all.....

thanks again everyone..any information is a blessing, I hope everyone here has a good day......russell
Helpful - 0
999891 tn?1407276076
Hi Russel, A Neurologist deals with neuro medical issues, A neurosurgeon deals with neuro surgical issues. DDD & CM1 are both treated surgically, I cant understand why you need to see a NL

Ray
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Russell,
Many of the trained chiari specialists do treat at clinics.....not knowing where u r located makes it a bit diff to suggest where to start.

I also have a bulging or herniated disk in my cervical spine right where the cord is compressed from stinosis...so I need to have one disk removed and the ones on either side fused,I already had my chiari surgery, so this is supposed to be a much eaiser one to handle....but it is important to focus on these disks as they can cause just as much of an issue as chiari...and it all depends on if it is blocking the flow of CSF....ur chiari may be there, but not impacting flow while ur herniated disks r...and for that u need a orthopedist.

I am in the same boat with u.....

"selma"
Helpful - 0
1041839 tn?1278681846
ok now i'm confused (doesnt take much to do that btw) your NS is sending you to a neurologist??? You have got to find a chiari specialist!!! If it were me i would run from this guy but thats just my personal opinion. -- Shannon
Helpful - 0
1144229 tn?1293437082
I wanted to be clear about somthing that could be misunderstood...

I have 2 herniated cervical disc that need to be fused,
The neurosurgeon, asces for my MRI cd, I finally got it from another hospital.

2 days ago I went to him with the cd thinking now he may do something to help the extreme headache...
  He viewed the MRI, and found the 2 what he reffered to as large disc herniations, the , he said russell,
I am going to have to set you up to see a neuroligist, to make sure before
doing the cervical disc fusion.
   He told me I have Chari one Malformation, that this could be the reason or alot of the symptoms.......and here I sit, with
This distinct feeling that because of lack of insurance,and lack of proof of income, that I will in fact suffer at the hands, of a untrained
neuroligist........
  thanks for you guys reply's, sincerely thanks......russell
Helpful - 0
1041839 tn?1278681846
Hi russell and welcome to our little family! I completely understand your frustration and being scared. I had to quit my job back in may because of all the crazy symptoms and it has been hard but we are making it! I know right now your scared and confused but just take a breath. We will answer any questions you have ... or at least try to. Also, like everyone else said it is VERY important that you go to a chiari specialist and not just any NS. -- Shannon
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
after thought on insurance...have u tried medicare/medicaid?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
HI Russell.....it is unfortunate but many of us do get misdx'd and treated for other issues and the chiari seems to be found last.
And it is possible to have several things going on at once.
Many of what u describe can be from the chiari....were u checked for the other chairi related conditions?

Do u know how far ur herniation is ...size wise, is it blocking CSF:?

I am sure there r many that can relate to  how u feel....if u haven't done so already read the poem at the top of the forum....it is good to have hope that there r drs that do know and understand what we with chairi go thru.

"selma"
Helpful - 0
999891 tn?1407276076
Hi Russell,
I was DX after going to my GP with vertigo and hearing problems including sensitivity to loud noise, pain in the neck and back of the head is one of the classic CM symptoms....
I have neck and shoulder pain as well but cant say if it is due to the CM or a Syrinx and other issues I have in the Cervical & Thoracic area of my spine....
Cant help you with the insurence thing as I live outside the US and our medical system is different.....

Ray
Helpful - 0
1144229 tn?1293437082
thanks you guys........for the reply's, this is awful to me, I am a Tattoo artist by trade.
  For the past 8-10 years, the center of my back between my shoulder blades, has hurt me so bad, I assumed it was from being bent of while tattooing.
   I also thought that because of so dental issues, that this could cause my back to hurt like this...
  Do these things sound familiar to any of you??
I really thought that this was a extreme abcessed tooth because just walking causes my head to hurt terribly..
Now with the teeth not there the pain continues.
  if any of these things sound familiar please tell me.

I am very scared, I have no medical insurance, I am a husband and a father of a 16 year old daughter, I am not sure how I will be able to make ends meet paying bills ....etc
I feel very lost and nervous.

I had a nervous break down at 25 and was diagnosed with a bi polar disorder, and have been sucssfully medicated for this for all these years, to simply find out some of my sensitivity to loud noise, and stressful conditions, may be related to this disorder called CM1........any input would be great.
  I hurt so badly that my hands tremor very badly........thanks for being there.........russell
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi And welcome to the Chiari forum.

The best piece of advice we can give is  to make sure u have a chiari specialist not just a NS...both can treat and do the surgery...but only one has the experience I personally would want.

There r several other tests u want the NS to suggest b4 he even mentions surgery as an option....u need to b checked for a syrinx, tethered cord, Ehlers-Danlos, pusedotumor cerebri....

We do have a list of chiari specialists here on the forum, but research all drs this is just a starting point. Also, keep in mind u may have to travel to get to a true chairi specialist.

There r many in the same stage as u...newly dx'd and many that have had surgery, called zipperheads, I am one.....so post ur questions concerns and rants...we r here and u r not alone.
We welcome u to our little family here and sorry u had to seek us out.

"selma"
Helpful - 0
1141287 tn?1287496799
hey there!!

im so sorry to hear of your recent news!  i was just diagnosed last tuesday with chiari too.  my neurologist was the one to have found it and has referred me to a neuro-surgeon.  so now, i have found this amazing board and the internet and am just researching like crazy.  

my understanding, because my neurologist DID recommend that since im only 25 and already having symptoms (sharp excruciating pains when i laugh, cry, cough, or strain, etc...) , that I do have the surgery, that the neuro-surgeon is who i do everything else through.  I would call him back and start there.

this is all VERY scary - but .. you DO have a diagnosis that is a great start...  now we just have to go from here!

(glad to see another 'newbie' on here too)
Helpful - 0
999891 tn?1407276076
Hi and welcome to our Chiari comunity.

To learn more about CM go to our health pages (top right of this page)

You need a Neurosurgeon (NS) with experiences of Chiari. The only treatment is surgery, the symptoms can be managed by using a combination of medications.

DDD and Chiari are related condetions. Other related condetions such as Syringomyelia ( Syrinx) alsow need to be ruled out....

Did they say how much the herniation is and if there is crowding or if you have CSF blocage....these are all things that the NS will be looking at before deciding on how to proceed so this is why you need to have a NS with good experence of CM...

The NS may sugest a CINI MRI scan also called a flow study, this will show any CSF obstruction...

Please keep us posted, I hope you get some answers, if you have more questions please ask....this is a good place to learn about your condetion and also to get support when you are feeling like you do now....


Ray
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1671273328
Australia
1756321 tn?1547095325
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