Do I have symptoms of Chiari malformation?

[jerrydub]

Hi Everybody, this question is for SERIOUS people. I wanted to just say that I'm glad I came upon this forum..Please, I know this post it a little long, but If you can take time to read this post, I would greatly appreciate it.  I think I may have Chiari Malformation symptoms. I'll list what happened and my symptoms..so here goes,  One day..I was sitting on my friends trunk on his car..he was already sitting in the car.and being a prankster, he turned on the engine and drove away at about..15-20 miles per hour..My body fell off the car and the back of my head was the first to greet the concrete.  I was laying on the floor and immeditley sat up and then I fainted for about 8 seconds. Head started to hurt for about 1-2 days.  About 1-2 years after my head trauma accident, everytime i turn my head left to right..I hear this fizzing/pop rock/sandpaper like noise in the same place I had my concussion. Also, the fizzing noise can be heard sometimes when I dont turn left to right, and it would last about 5-8 seconds. Overtime, I have also had headaches (not normal), but like a keen/ sharp headache in the very same spot.  I also get a numbness/(EX. sitting on ur leg too long) in my face,body, and hands somtimes.  This terrifys me as I dont evenn know what this can be.  I have had CT scans, MRI scans, and MRA scans for what I thought to be a brain anuerysm, but nothing showed up on the scans.. Now that I came upon this site..I'm afraid I share alot of same symptoms here. Do you think I have Chiari?

Thanks...

[bella2gardening]

Did you ever find out what is causing the fizzing sound. I am experiencing the same thing along with headaches.

[selmaS]

   Hi...yes, a chiari specialist can dx and treat IIH or PTC which is Intra cranial hypertension and  pseudo tumor cerebri......

  DO u have a dr close to u to go to?

  "selma"

[jerrydub]

Dear Selma, I was wondering if I go to a chiari specialist, will they also be able to determine if I have pseudotumor cerebri (Intracranial pressure)?  my head sure feels like there is "sharp pounding" almost every few days..and other days it wont hurt, but my head would feel like it's not comfortable, it's hard to describe it.   It's the start of a new year and late happy new year!

[jerrydub]

=/ Hope you the best.

[selmaS]

No...most states have this in place....not sure what all his plan is....I pay for my insurance and my co-pays...this just helps those of us with a pre-existing get affordable insurance.

As for exercise...I do not do much bcuz of that..strain causes pain...plus I was dx'd with EDS and I have to be careful with my joints...so until I get to a dr for that so I know what I can do safely...I have been careful not to do too much...I have a stair stepper...and I walk.

I used to do more aerobic type exercises but it got to a point I could no longer do them, I have yet to try again since surgery.

"selma"  

[jerrydub]

Hi, I was wondering when you exercise, do your headaches appear more? They do for me..I think..

[jerrydub]

Are you talking about Obamie the Commie's health insurance? =S lol.

[selmaS]

See if u r qualified for state funded medical insurance...they have lower rates and cover those of us with a pre existing condition.

U still get bills, but it is better than not having ne insurance at all.


"selma"

[jerrydub]

I have not taken a thoratic, lumbar, or cervical spin MRI, only a regular MRI with contrast.  Once I save enough money, I'm going to get a CINE MRI done for CSF flow.

[selmaS]

If u have Chiari it is best to avoid a LP or spinal tap...a CSF flow test is the CINE MRI.....and the CINE is a very good route to take...have u have a cervical spine MRI as well as a brain MRI?...thoracic and lumbar spine MRI'S?

"selma"

[jerrydub]

by the way, which is better to do a csf flow test, spinal tap or cine mri?

[jerrydub]

I will continue to post updates when I get enough money to go see another Chiari expert...  Thanks Selma...its been an awful journey as I cant find what the problem is. May God bless your soul because of your will to help everyone on here everyday.

[selmaS]

well, it all depends on what is really going on....if u have PTC and the CSF keeps on building that is not good, it can put pressure on ur optic nerves as well as continue to cause HA's, balance issues, even vomiting, there is a large range of symptoms u may have to deal with....if u have a syrinx that is left untreated and it continues to grow it can cause perm nerve damage.

U really need to find a chiari dr to review ur MRI's to see what is going on......not being a dr, I really can not say....but, this is a life altering condition and no one can say who will or will no get worse or when.

"selma"

[jerrydub]

Hmm..my father found the doctor..anyways. do you know whats the worst that can happen if I dont get it treated?

[selmaS]

Hi....I would deff try to find a dr that will read ur MRI and give u an indication as to what is going on.

Keep a journal of ur symptoms, if u have ne changes, call ur PCP asap to see if u can get in to have a medical file of the complaint and the symptom....plus, ur PCP can rx did testing, like MRI's.

I would also see what chiari drs might be in ur area...and a chiari dr also treats hydrocepalous...many of these issues r inter-related.

Which dr gave u the chiari dx?

"selma"

[jerrydub]

I forgot to add..I also told him that I have symptoms of feeling numbness or..thousand needles tingling feeling in my face and arms.

[jerrydub]

Yes, he is a Chiari "expert".

Hmm..I do remember when I told him that it sounds like soda..fizzing or bubbling..and also said it sounds like sand rubbing against each other..and I remember that he wrote in his computer "clicking" sound.  I just looked at mayo clinic for tinnitus and it says possible sounds may include "clicking," I'm dumbfounded...

Also..the appointment only lasted around 5 minutes.

He didn't say why he felt I was fine..All he did was look at the MRI for literally like a minute..and he said I see no problems you're fine.  I remember what I was told about the "clicking" sound was that many doctors dont know what this sound is, and that he didn't know.  Then I asked him if it was because of Cerebral fluid blockage...and he said no...he seemed somewhat annoyed and impatient when I asked the question again about csf and the sound, as I was very worried..ya know...

Sigh...I am really depresseed as doctors and I cant even figure out this problem.. My blood pressure is about 150 lateley, probably because I have been worrying and stressing

Also, what are the risks of leaving this untreated?  I'm really giving up hope bcause I cant find the root of the problem, and neither can these NS.  Should I just ignore this fizzing sound and headaches and just continue to live life...?  Or do you think I should see another Chiari doctor somewhere else thats renown?  

By the way, would a hydrocephalus NS help me better than a Chiari NS for this "clicking" sound and headache?

sorry for the long post, you're the only person I talk to about this...

[selmaS]

I have no idea y this dr is not able to help u...u have a chiari dx...correct?.....

And u have symptoms including this fizzing sound...which could be tinnitus...I have it, I also get ringing too...but mostly it is a fizzing or fuzzing sound and it is constant...it had left  for a while after surgery but came back with some meds I am on...and as I do more it seems to increase....

Did this dr say y he felt u were fine....and may I ask what u were told b4?

"selma"

[jerrydub]

So I went to the Chiari nuero surgeon..and he looked at my MRI with contrast.  He said that nothing is wrong with me from the MRI.  I asked himif he knew what the "fizzing" sound was, and he said that he didn't know. I then asked him if it had anything to do with cerebralfluid, and he said no.  He also said my report from the nuerosurgeon is all okay and  asked why was I there to see him if my report was fine.  Are Chiari experts suppose to recognize what this sound is?  Do you think I should get a second opinion..or I'm actually fine..and this "fizzing' could just be something unrelated?

[selmaS]

Hi...sounds like u had a general NS that has limited knowledge on chiari, no a chiari specialist....I went to a few of them as well, but did not travel as far as u did.....


Pseudotumor cerebri is the same thing as  intra-cranial hypertension....it is a build up of CSF..some have this first and it can cause chiari and some will develop it after the PFD surgery.

They may try to use meds to control the amount of CSF, if that does not work they may install a shunt...there is info in my  journals on shunts for a syrinx...I believe teh info is similar for PTC.

"selma"

[jerrydub]

ALso..Have you heard about pseudotumor cerebri? it sounds again like csf..and was wondering if a real chiari specialist would pik it up..thanks selma!

[jerrydub]

So I went to me nuero surgeon..and he said that everything is fine in my MRI with contrast images.  When I asked him about what the "fizzing" sound was in my head..He didnt even tell me what it was, all he did was give me a slip to see a nuerologist? Then I went to go see the nuerologist he recommended, when I was talking to him...I asked if the fizzing sound was due to cerebral fluid..and he said no. I also asked him if he knew what the sound was, and he said no.  After that, I was really pisseed off...Is it that I'm fine..or these people dont know what the hell they're talking about? When I would ask my dad if he was one(chiari expert)..he would say that..he knows everything. He's good at everything including chiari..and I looked at him like -_-. I'm not even sure if the nuero surgeon is really a chiari doctor, he just may have said to my dad that he "knows" what it is...but wasnt a expert..I think my dad wanted another nuero surgeon to see just in case it wasnt chiari... err I'm so pissed off....What are your opinions about them being chiari experts???
Am I just over reacting?

BUT tomorrow..I will def..be seeing a REAL chiari doctor, and will bring my MRI with Contrast images because I have found articles of what he wrote about it here in Taiwan...

[selmaS]

Well I can tell u what my chiari NS wanted-
Brain MRI w/wo contrast
Cervical spine MRI
CINE MRI w/contrast
Thoracic spine MRI
Lumbar spine MRI

The reason was to rule out other related conditions like tethered cord, which I do have, and a syrinx which I do not have....but it is best to know what all u r dealing with  from the get go.

Well a Cine MRI is done with a BP clip....they monitor ur pressure as they watch the real time flow to see if it pulsates with ur heart beats....not all of us have a complete blockage , but have an obstruction.

I will add not all chiari drs feel the need for a CINE MRI...it all depends on if they can see   overcrowding in the other MRI's.

"selma"

[jerrydub]

I think I only had the brain done..crap, should I have had both done? And will a mri with contrast be enough to detect a chiari or csf blockage? thanks again..