I keep hearing "Your Chiari isn't large enough to be behind your symptoms," despite everything I read from reputable sources directly contradicting it. I'm sure I'm not alone in this experience. So, as a support to all of us to show how varied this can truly be, would you mind sharing below your herniation size, whether or not you have a syrinx, and your most bothersome symptoms? Thank you!
Mine is 7-8mm and I have a very narrow syrinx. I have numbness mostly right side of body and now starting left side. Headaches, dizzy spells and nausea.
After two separate MRI`s,three months apart,the first was read as being 6mm and the second was 4mm with a small amount of flow restriction and no syrinx.Both were regarded as borderline, and as such, were not the cause of my symptoms.Yeah right!.I now know that size doesn`t matter and the herniation is a major factor in why I feel so unwell.I also have a connective tissue disorder similar to EDS.My symptoms are definitely caused by Chiari , as there are just too many to be coincidence.I hope this helps.
Mine was reported at 5-6mm and borderline, found out I am actually closer to 6.5mm and no syrinx has ever been mentioned. My symptoms have been "random" dizziness headaches in the past, however recently I had a chiropractor adjust my back and all of my symptoms have increased dramatically to constant headaches more bouts of dizziness tingling in my face and left side when aggravated.... Size absolutely does not matter. I hope you find a good neurosurgeon/neurologist that will take you more seriously.
I feel chiropractic for my headaches before I was diagnosed amplified my dizziness…It has been 3 weeks since my surgery and I am having a nauseous day.
6 mm and I had: vertigo, lost my balance, dropped things, intense pressure in ears and head which increased when bending over or looking up, trouble and pain when tracking with my eyes, pain in back of head/headaches, fatigue, depression/crankiness, periods of intense pain in head not relieved by anything, nausea.
Tingling in legs/hands/arms sharp pain in toes (not sure if that's related), exercise induced pain/ fatigue/headaches and heart palpitations.
I have other things that I will mention but not sure if they "count" for this discussion. I will let you decide.
Fibromyalgia, TMJ, Ear pressure and pain, IBS, debilitating fatigue, depression, anxiety.
Like some have said these all can seem very random at times with no rhyme or reason although rainy days did make my headaches worse.
:-)
My 11 year old per Dr. Frim: 4mm herniation with brainstem compression. No syrinx. Symptoms are a little hard since she may have a CSF leak also. Bad pressure pain in forehead better when lying flat. Pain in back of head, neck, back, arms and legs. Been pretty much flat since mid November which may be more the CSF leak.
13-14 mm Have not had surgery as of yet, diagnosed 7 years ago and take morphine, Norco es and amitriptline to sleep. still hoping this nightmare ends before I have no other choice. Pressure, almost to the fainting point if I sneeze, cough or turn my head quickly. Ears ringing constantly, progressively getting louder, (ringing gets louder if I clench my teeth, strain in any way, chew, move my head to certain positions. (extremely frustrating, never get a moment of quiet in my head). Feel as if I have an ice pick stabbing in my throat that comes and goes. Lump in my throat and difficultly swallowing. Legs are weak even though I have more muscles in my legs than most men. Insomnia, pain in head, neck, shoulders constantly, arms tingle and loss of feeling in my hands. Extremely clumbsy at times. Bending over an looking up is not a good thing. I can feel the pressure in my head constantly. Loss of short term memory.
Hope this helps!
Mine is 5-6mm. I had a blockage of CSF. My symptoms were increased pressure in my head, ringing in my right ear, headaches, fuzziness, dizziness, confusion, loss of words, memory loss, depression, anxiety, body aches/pains, fatigue, balance issues, vertigo, sqigglies in my visual field, and depth perception problems. Most of theses were worsened by sneezing or bending.
Much like many of us, I received the same song and dance about how my chiari was NOT to blame.
Good luck with your research, hope this helps.
-M.
Hi Unwritten! My herniation is 12mm and my most bothersome symptoms are body pain, headaches, anxiety, fatigue, chest pain, dizziness, short term memory issues. As you know the list is much longer but those symptoms are some of my most difficult to deal with. How have you been Unwritten when you get a chance let me know how your appt went with Dr. B. I hope all is we’ll take care!
3.6 mm and here are my symptoms:
Daily: |
|
_ Headache (esp. if daily or at lower back of head)
_ Fatigue
_ Vertigo from position change or sudden standing
_ Pressure / pain in the neck
_ Pressure / pain behind the eyes (soreness in the eyeballs)
_ Swaying
_ Pain when changing position
_ Pain & tension along ear / eye / jawline
_ Pressure in ears / ears feel stopped up
Sometimes:
_ Painful tension in neck
_ Dizziness
_ Tingling / numbness in the extremities
_ Intolerance to bright light / difficulty adjusting to light change
_ Popping / cracking sounds in neck or upper back when stretching
9-10mm with syrinx. Most annoying symptoms constant headache feels like head wants to explode definitely worse when sitting up or standing. Painful tingling in upper extremities for hours with no relief. Feels like the pain when your arm falls asleep real bad and then hurts as its waking back up but lasts for hours sometimes all day. Just saw neurosurgeon today and recommending surgery before syrinx gets and worse. So more research and planning. The possibility that I could feel normal again is hope for me I definitely can't do this long term I'm already going crazy and having way more bad days than good.
5mm and my worst symptoms were vomiting, full body twitches and the headaches… felt like I had an Alien from the movie Alien in my head (silly alien! you are supposed to be in my chest) (( that’s what I used to say when the headaches were unbearable – bad humour I know but it got me through)) since my surgery I’ve been relatively symptom free. I do get some bad headache days but they aren’t as bad as prior to surgery. <3
Was told by the 2nd opinion doctor that my mri showed little or no herniation and that my symptoms were not because of chiari. Was told by another doctor that specializes in chiari (which the dr. that I went to for my 2nd opinion was also suppose to be a chiari specialist) that I need to have surgery and that my herniation was a 9 +) So there you go. I don't want surgery at this stage, but I do need answers. I have all the symptoms.
Also,
I had a MRI CSF Flow study and it showed diminished flow, but the 2nd opinion doctor said the diminished flow results could have been because of my head position when getting the test done. Go figure.
10mm no syrinx. My symptoms were fatigue, dizziness/lightheadedness, tingling in hands and feet, neck pain, shoulder pain, headaches/pressure behind the eyes, poor balance, and poor coordination. All symptoms have improved post-op and some have been nearly eliminated.