Normal CINE MRI?!

[Crys86]

How is it possible to have A LOT of Chiari symptoms (already ruled out everything else and back to pointing at Chiari) and a normal flow on the CINE MRI. I had my CINE MRI and they repeated my cervical spine MRI the same day. The doctor's assistant called and left me a voicemail saying that they were both normal. How the heck is that possible?

[selmaS]

  Hi and welcome to the Chiari forum.

The member u r addressing ur reply to has not posted in almost a yr, so u may want to post on a newer thread or create a new one so u can more replies from current members.

May I ask where ur syrinx is? Do u also have Chiari?

I can related to the way ur head feels as I had that as well, ,my surgery has helped me with much of it.

[jessiprr]

you sound just like me . I was DXed with a syrinx (clump of spinal fluid in spine) and my head feels like its blowing up!  pain when cough bowel movement and straining things I do............it kills me
I want to stop feeling like my head is blown up like a parade float.

[selmaS]

  Hi... normal CSF flow does indicate a need for surgery, but it does not indicate no symptoms...as June mentioned u could have EDS and if u do cerviocranial instability can cause many of the symptoms and pain we all deal with. But unless u have a true chiari specialist they may not know to look for these other issues.

POTS could explain the heart palps u mentioned ....Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia,[1] to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively.[2] Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.
Symptoms present in various degrees of severity depending on the patient. POTS can be severely debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.

Ehlers–Danlos syndrome (EDS) (also known as Cutis hyperelastica[1]) is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (Type I or III). The collagen, often referred to as "glue", in connective tissue helps tissues to resist deformation. Collagen plays a very significant role in the skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen leads to increased elasticity within these structures. Depending on the individual, the severity of the mutation can vary from mild to life-threatening. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution is advised and special practices should be observed to prevent permanent damage (source wikipedia for both POTS and EDS)

With EDS there r several types the hypermobility type is most common, here is a list of some issues related to EDS-

High and narrow palate, resulting in dental crowding
Early-onset periodontitis
Nearsightedness, which may be extreme
Blue sclera
Retinal detachment
Flat feet
Digestive disorders: (gastritis, gastroesophageal reflux disease, irritable bowel syndrome, diverticulitis, gastroparesis (partial paralysis of the stomach))
Hiatial hernia
Anal prolapse
Dysautonomia
Vulnerability to chest and sinus infections
Collapsed lung (pneumothorax)
Intestinal/uterine fragility or spontaneous rupture
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
Insensitivity to local anesthetics.
Arnold–Chiari malformation (brain disorder)
Cranial instability
Migraines
Problems with proprioception including dysmetria
Talipes equinovarus (club foot), especially in the Vascular type
Platelet aggregation failure (platelets do not clump together properly)
Bleeding diathesis
Petechiae
Cerebrospinal fluid leak (rent in the meningeal tissues: dura, arachnoid)
Temporomandibular joint syndrome
Surgical complications and intraoperative problems due to tissue fragility

[Crys86]

I have been tested for sleep apnea but I do not know if I have it or not, my pcp never called me back with the results, even though I called her office all last week (I had it two weeks ago) and my calls weren't returned (her normal nurse is on vacation and the lady filling in doesn't like to return calls or something obviously). So I'm going to go pick up my results myself shortly. I haven't been tested for pots or eds, but I know I have a tachynicardia (sp) problem. I found out my heart rate beats up to 170 by itself and I was seeing a cardiologist for it, but he couldn't explain why it would randomly shoot up for no reason while I was sitting. At first they thought I had SVT but I had a test that proved I didn't. So I finally gave up figuring out why a couple years ago, because I never had anything they thought and they said my heart was healthy, figured it was just me. Idk if that is related to Chiari or not.. nor do I know what POTS or EDS really is, other than I've seen people speak of it on here. As for my NS I see him tomorrow and am slowly losing faith in him. I am considering just going to a Chiari center in NY or to Dr. Oro in Colorado.

[auntij2746]

Oh dear I am so sorry that you are suffering so much.  Selma has always advised getting tested for other related conditions that frequently present In chiarians like erlos danhls (sp) POTS, apnea and some others.  Whether you have surgery or not it would be good to know if you have any of these. Selma can tell you more.  I am praying you get further clarification on Tuesday from ns.    are you able to travel to a chiari specialist?   Hugs. June

[Crys86]

I have severe headaches, and a lot of neck pain. I slur when I talk a lot, brain fog, balance issues, and lately I've started getting so dizzy that I get sick and throw up. If I cough I feel like I'm going to pass out and have a massive headache followed by a headrush. I've passed out briefly 3 times in the past couple of months. Two of those times scared everyone that was there and led to me being taken to the hospital in an ambulance … Those are my main problems. Mostly I spend a lot of time feeling drunk, like I've drank a few shots of alcohol or something. I'm exhausted all the time. I pep talk myself at work just to not quit and go home because I hurt so bad and feel so bad.. I also have probably 10 other problems but my biggest ones are the neck pain, and things. Also I have the weirdest popping feeling in the back of my head that sends really bad pain throughout my head.. is that normal?

[auntij2746]

I'm so sorry that you are having this frustration right now crystal :(   I hope that when you see the ns on Tuesday it becomes more clear.  I so agree with you it would be so nice if there were a chiari specialist here...  is going out of the area for another opinion an option for you.  What are your symptoms?  Hugs and prayers coming your way and hopes that you have something to take your mind off of (if that's possible!) Until you are able to have a better explanation from the doctor on Tuesday.  June

[Viva001]

The Chiari symptoms typically wax & wane, and the csf flow ebbs & flows.  Maybe a day or even an hr. later the cine MRI might show obstruction.
Also, maybe the radiologist wasn't experienced in reading it.

[Sexybare]

you need a true chiari specialist to have a look at your tests. get second opinion. my theory is even if your csf flow is good, which is awesome by the way, you still have chiari and can still have symptoms. i truly feel you need specialist opinions. without them we continue to get the chiari runaround. many specialists will look at your results for free and call you with their opinion. dr oro at the chiari care center did for me. he is wonderful, world known dr.

[Crys86]

I will look at it now thank you :)

[LeagueCityREALTOR]

Several folks on here have good info on Chiari. While researching tethered cord, I found the Wisconsin Chiari Center's website helpful, easy to ready, educational and viewer friendly. The site addressed MRI testing.

http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000019

[Crys86]

Do they normally do CINE MRI with contrast, I know they didn't mine. I tried to look up a normal CINE MRI to compare mine to, but really mine isn't as clear as the other CINE MRIs I have seen. And I don't know what I'm even looking at lol.

[Crys86]

Well he said, "essentially normal and they were unsure whether it was a dramatic Chiari". I really don't know what the actual report says just what he left on my voicemail and I guess I wont know until Tuesday. But how is that even possible. I have such terrible problems and get normal results? I wish I could find a specialist here >_<