New Diagnosis?

I was just diagnosed with chiari I had both ct and mri, both found the same. My tonsils are 7mm into the foramen magnum. Been having very bad migraines abd dizziness, does it ever go away? What would help? Loss of balance becoming more frequent. Only 31 years old and kind of scared with symptoms becoming more frequent and painful.

[Hursty48]

Hi JSIBARRA
I'm new here and just diagnosed too. I havent had the MRI so I have no idea what the mm's are yet. The CT scan showed the Chiari. I have heaps more symptoms than these doctors know -which I now know are significant symptoms after talking to people here. This is a really informative and supportive site I have found.
I dont think it ever will go away. I'm not sure of that but as far as I can see I think it doesnt get better by itself. It is scarey. I am really scared too.
Does anyone know if it is dangerous to have to wait 2 weeks for an MRI after a ct scan showed chiari results being that symptoms are worse? I dont know whether to go to ER or not.
Have you seen specialist? I am guessing so with the info you have. What are they suggesting you do? By the sounds of things from other posts here which I have read - you would be fairly enititled to surgery to relieve the pressure you ovbviously have?
This really *****.

[selmaS]

Chiari is congenital, so u've had it since birth.....normal living can cause the chiari symptoms to suddenly  worsen...it could be a fall, car accident, roller coaster, or ride on an airplane.....u may never know...chiari can not be cured....just lessen the symptoms...either with meds or surgery.
Most important u must find a chiari expert.....where do u live?
Also were u checked for ne other chiari related conditions?

Hursty48- waiting 2 wks should be ok...as long as u r not having severe health related conditions.....breathing issues, heart palps with chest pains ect....what symptoms r u having that concerns u?


Godspeed
"selma"

[Shane99]

Hi JSIBARRA,

As a general rule, no Chiari doesn't go away. I hate to disappoint, but Chiari isn't curable. It may not progress fast in some cases and there are treatments (like certain physical therapy, like Fall Prevention for the dizziness) and medicines that can help with symptoms or maybe even slow the herniation's growth down, but not even surgery is considered a cure - although surgery generally helps A LOT!

I'm not sure how much you know about Chiari so here's a quick primer; a Chiari Malformation is where cerebellur tonsils (the lower-back part of the brain) starts extending past your skull into your spinal column. This part of your brain can effect balance, vision, memory, motor control, as well as other problems.

At 7mm, you are just about where doctors start talking surgery. Usually surgery is considered after you become diagnosed with Syringomyelia (blockage of spinal fluid). Have they discussed anything about the spine with you? Syringomyelia is one of the big dangers with having Chiari (in my opinion, it may be the most major). If they haven't, then they may not be wanting to operate yet. Have you had any issues with pains, numbess or tingling in your limbs?  

Make sure you have a Chiari specialist, not all neurosurgons and neurologists are. Check around on line for specialists in your area. There are websites around like wwwasap.com that can help. What state do you live in? I'm sure someone on these boards can help you locate a good doctor.

Just remember that you aren't alone in this. While Chiari is a fairly rare condition, we are here and will help however we can; even if it's just support.

JSIBARRA,

No, 2 weeks shouldn't cause any problems, it often just takes that kind of time to arrange things in the health fields. Just stay on top of things as best you can. If you have any serious sudden symptoms, by all means, go to an ER, but you should be okay that long.

[Shane99]

Heh, sorry selma, I guess you posted while I was typing.

What selma said :)

[selmaS]

that's ok...just shows we r giving her advice  we agree on .....u do so well explaing things!!

: P

"selma"

[JSIBARRA]

Thanks for your support. My Belief in God is very strong, and I truly believe regardless of the circumstances being good or bad I know all I go thru is meant for a purpose. I have not seen the neurosurgeon yet, I am just awaiting for an appointment from his office. Both tests confirmed and also indicated a sublte medullary compression on the right, which my PCP told me it was some kind of pressure along with the chiari but she had to have the specialist speak with me regarding all the medical meanings Have you ever heard of this?  

[selmaS]

From what I have read it appears to be another term for syringomyelia......

Below are posts from the web:

All incidentally diagnosed malformations were mild and were not causative of medullary compression or syringomyelia.



Syringomyelia (IPA: /sɪˌrɪŋgoʊmaɪˈiːliə/) is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. Since the spinal cord connects the brain to nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms, or legs. In some cases paralysis occurs. Other symptoms may include headaches and a loss of the ability to feel extremes of hot or cold, especially in the hands. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.

Other, more common disorders share the early symptoms of syringomyelia. In the past, this has made diagnosis difficult. The advent of one diagnostic test, however, called magnetic resonance imaging or MRI, has significantly increased the number of syringomyelia cases diagnosed in the beginning stages of the disorder.

Syringomyelia has a prevalence estimated at 8.4 cases per 100,000 people,[1] or about 21,000 Americans, with symptoms usually beginning in young adulthood. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing, straining, or myelopathy. If not treated surgically, syringomyelia often leads to progressive weakness in the arms and legs, loss of hand sensation, and chronic, severe pain.

Hope this helps and answers ur questions.

Godspeed
"selma"

[JSIBARRA]

Will the pain ever subside? Once the sypmtoms appear do they worsen evenutally, because sometimes the pain I have is with alot of dizziness. Any advise?The doctor said my probabibilty for surgery was high? Do they practice these procedures in San Antonio, Texas.

JSIBARRA

[selmaS]

As far as to if the pain ever subsides....everyone is diff and it depends on wether or not u had any perm damage...it can happen with syringomyelia if left untreated too long! Also I noticed my pain cycles, and depends on how much activity and stress I am under.
I do not know of any drs in TX and I believe that one forum member has decieded to travel to CO to see Dr. Oro....not sure if it was because she did not find ne in TX or not.
Most of us have found we do need to travel for treatment....u may find someone close.

And Shane and Lovemygirls2 both seem very please with their dr...and I do believe there are other forum members going to him as well.U do need to check them out and see who fits ur neds best.

Ur need for  immediate surgery will depend on ur herniation and or a blockage.Please let us know ur MRI results!

Good luck
Godspeed
"selma"

[Shane99]

As for the pain; Understand that there is no cure for Chiari, but the operation can help a lot with the symptoms. My pain is much less since I had the procedure. I'm a believer in the surgery for this. Some people want to try other methods, but (in my opinion) nothing else works as well.

I'm not a medical professional, and this is only a possible definition so don't read too much into it, but "Medullary Compression" can refer to a restriction of various flows to the brain. I think the wording of what your doctor said, "subtle", and him telling you to wait for your neurosurgeon to talk to you, probably suggests that it's no big problem, it'll probably be fixed on it's own with the release of pressure from your Chiari operation. But when you have surgery it'll probably need to be checked. Have you had any problems like one side of your body or one leg getting weak?

[JSIBARRA]

I have problems with numbness and pain. Sometimes at night my leg will become so full of pain it becomes numb and I have to literally pull leg with my hands so I can turn. Now my head will at times become the same way I can't turn it I feel as if someone is pushing it down with hands. I never knew where all this pain was coming from but I guess now I know.

[JSIBARRA]

My symptoms are very frequent. I go to work and am literally dizzy throughout the days with headaches just about everyday. I rec'd word from the Neurosurgeon's office they said they are reviewing the film of my MRI and will schedule my appt. soon.  I did imply if they can spped it up a bit since I just don't know what to do with the pain sometimes. Sunday morning I couldn't pick my head off the pillow for about ten minutes the pain was so intense. Any advise, anyone? Also the Neurosurgeon's will be from University Health System in San Antonio,Texas. Don't know if they  really deal with chiari patients.

[selmaS]

...not aware of chiari specialist in TX......see what the NS says, but u will need a specialist.I understand how u feel...but the med pros do tend to proceed slowly....which can be a good thing...u don't want to rush into surgery with the wrong dr......
If the drs in San Antonio r not chiari specialists....maybe they can refer u to one nearby.....most of us have found we do have to travel to see a specialist.

keep us posted how ur appointment goes.

Good luck
Godspeed
"selma"