Borderline Chiari

[scarbrough987]

Hi, I'm new to the site and would just like to see if anyone has had similar experiences. I have had chronic headaches for 18 yrs that have gotten worse over the last 4 years to the point of incapacitation. I have head pain all day everyday. I always assumed they were migraines but they don't follow the normal triggers or remedies of migraines. The visual symptoms don't occur like a traditional aura either so i don't think the headaches a true migraines.
  
My pain is in the back of my head and neck, and on the top left side of my head especially behind my eye. The pain gets worse with any kind of exertion, laughing, coughing, etc. I have several different types of visual disturbances including blurry and double vision, flashes of light, shadows, photo phobia, 'snowy' effects and eye pain when looking to the sides and up.

I have memory loss, difficulty finding words,  ringing in my ears, frequent ear aches, numbness and tingling in extremities and sometimes face, nerve pain in left shoulder and upper arm, imbalance and frequent dizziness. Most of these last few symptoms have shown up in the last 6-8 months.

I have had 3 MRIs, all of which show a 3-4mm herniation of the cerebellar tonsils but I have been told it is either too borderline to confirm chiari or since its not the 'textbook' 5mm its probably not chiari. My last MRI included cine flow which was normal.

Anyway, what I'm trying to get at with all this is I'm trying to see if anyone has had similar experiences. I'm not trying to have chiari if I don't really have it but have yet to receive a definitive answer as to whether it is ruled out or not and haven't really had the most confidence in the professionals I've seen which claim to be really familiar with chiari but don't seem to be up to date on the newer parameters.

I have done hours of research on the subject and I know that experts in the field no longer go by the 5mm herniation as a diagnosis and even say tonsilar herniation is a symptom rather than a diagnostic tool. It seems extremely coincidental that I have a long list of symptoms consistent with chiari and a slight tonsilar herniation, yet I am unable to get a yes or no. When reading a list of symptoms from a chiari website I had something like 25 of them, but the head pain is the only thing that really interferes with my life in an unmanageable way, I can deal with the other things.

I would just like to know if any of your experiences suggest that I should continue to pursue this until someone who is up to date with recent research rules it out or if it just sounds like its time to pursue other avenues.

I am to the point where I don't leave the house for weeks because everyday things send me spiraling into worsening head pain. I'm sure you all can relate to that. I did some vacuuming yesterday and spend the rest of the evening paying for it. I would just like to have an answer. Thanks for listening, sorry it is extremely long and I look forward to any input.

[Rahe28]

Hi and welcome to the forum, though sorry to find you here. When I first found out that I had Chiari it was noted as a 7mm herniation,  and most def, NOT the cause of my problems. . . so I let it go and was d  iagnosed with a million other things along the way. Until, I had an MRI through an ER  visit in which they again told me that Chiari was not my problem...though that as all they found. I lost two years of memory due to some type of episode. Then about 8 months ago, I started research again and later learned that the hospital MRI shouwd Chiari at 12mm, so I started to researchmore, and thankfully find this site. I asked the same questions that you are asking, and almost he same exact symptoms. Everyone here insisted I be seen by an expert and to stand and take matters of my health into my own hands. They gave me the strenth to get more answers!!!! Everything you have listed most of us deal with on a daily basis. I would try and seek a specialist, as you have read....there is def. more to this. It is a long journey, but you have to at the very least rule it out. I will see my NS again on the 25th to schedule surgery. Without the help and persistence of this group though, I would have gone on until I couldnt anymore thinking that Chiari was really NO big deal, when really it is quite the contrary.You sound like a walking book of Chiari symptoms though to me. Sorrry, please do not take that offensively. I am too :)-
I also just learned that I have minimal CSF flow as well. Just be persistent and educated. YOu know your body bettter than anyone else, so if you know something is wrong, dont stop until you get the answers that you deserve !!!! Best of luck, and feel free to add me as a friend or message me anytime.

[selmaS]

  Hi and welcome to the Chiari forum.


  Not everyone with chiari is a surgical candidate and regardless, ur chiari should be monitored as it can change with time...plus, u should rule out related conditions for the cause of the pain if u do not have a CSF obstruction.

Rule out a syrinx, which can form in the cervical, thoracic and lumbar spine...then rule out tethered cord, sleep apnea, PTC, and Ehlers-Danlos*, and disk issues.

If u have EDS* it can very well be an issue for pain, as u may have cranial instability....

  It is important to have a true chiari specialist eval all info regarding u and ur chiari and related issues to help guide u as to what is best for u.

  I would say to push and get info from a NS that u know is well experienced with chiari and go from there.

[Rylanesmom]

Location of headache would also make me question pseudo tumor (behind eye and higher on head) as others have said you can have small herniage of tonsils and still have csf low blockage from chiari...cine flow study would tell if that was the case

[scarbrough987]

Thanks for the comments. I wondered about EDS I have read a little about it and that it is often linked to chiari. I do have mild scoliosis, I also had moderate joint pain growing up and I get a splotchy pattern on my hands and legs frequently which from what I've read could be indicators but I haven't looked into really extensively.

Thanks again for the quick responses, I'm glad to know I'm not alone.

[irislita]

Try to get a specialist.borderline or not,but u do have a lot of symptoms in common with me and mine are chiari.wishing u the best

[taleana2002]

hello, my daughter is 8 almost 9yrs old and the Neurologist we saw today said her mild chiari malformation is borderline and any surgeon would say ...what chiari? so if mri shows mild but neuro says its borderline, what on earth does that mean, she has headaches that are keeping her out of school, along with 32 known symptoms of chiari malformation but she also has high functioning autism with sensory processing disorder and severe anxiety disorder as well as add so i dont know what's a symptom of what anymore, she recently got glasses and developed asthma on top of it all. im frustrated and looking for answers, my real concern is this, if its borderline and he also said her skull wasnt shaped right to be chiari...so is it possible for it to get worse or will it stay the same? any help would be appreciated thank you all, becky, concerned mom

[selmaS]

  Hi and welcome to the Chiari forum.

Ur guess is as good as mine, there is no real consistency with how Chiari is defined clinically....borderline many times may refer to how long the tonsils are, most Drs will not classify it Chiari unless the tonsils herniate more then 5mm's...but Chiari is not the herniated tonsils, it is the malformation of the skull which causes the tonsils to herniate...and regardless of how long they are u can have severe symptoms with what many refer to as mild...so none of the Drs terms fit how the patient is feeling. Another  possibility for her symptom can be related conditions....could explain the asthma and other issues such as her vision....

What u need is a true Chiari specialist to do more testing...a CINE MRI which is a CSF flow study to see if she has an obstruction, then rule out by means of MRI's that she does not have a syrinx, disk, issues or tethered cord, so MRI's of the cervical, thoracic and lumbar spine are needed, and a sleep study to make sure she does not have sleep apnea...(especially since she has a DX'd breathing issue already) and ICP, POTS<and Ehlers-Danlos....

No way to know if her symptoms will remain as they are, Chiari symptoms can cycle, so she can go long or short periods without is, and long or short periods where symptoms flare....

Use the list of Drs in the Health Pages to research Drs...the list is not a referral nor an endorsement, it is just a tool to use to research Drs.....http://www.medhelp.org/health_pages/list?cid=186

Many of us do need to travel to get to one of these Drs and it is well worth doing to get the best and proper care.