February 25, 2015 at 1:50 am #792
Results: no evidence of cervical instability.
Incidentally, I was in a great deal of pain while these images were being taken.
Hurts more to bend neck back, hurts less to bend neck forward.
Head circumference 57.5cm (98th percentile)
Wondering if anyone can see anything here?
My apologies if I have not posted the correct shots.
Thanks in advanceFebruary 25, 2015 at 1:54 am #5321
Oops. here is one more.February 25, 2015 at 12:17 pm #5323Dr. DianaKeymaster
I wonder if you have symptoms of high ICP? Sometimes that is enough to try Diamox to help figure out if external communicating hydrocephalus is part of the problem. Your MRI, like mine, hints at the possibility of too much CSF in the subarachnoid space above the brain, and supports the idea that you *may* respond to Diamox. Your sella looks good — which is great. Like many of us, it looks like it hurts to bend your neck (your discs bulge a bit). Are you showing us these because you’re considering a neck fusion, I wonder?February 25, 2015 at 9:03 pm #5324BarbaraParticipant
Do you have a flexion view, with your chin down ?March 3, 2015 at 1:31 am #5327
Thanks for responding!
I was hoping to get a prescription for a cervical collar, but can’t get anyone to do that.
I feel like I have a lot of the symptoms of inter cranial pressure, but I’m missing some, like urinary incontinence.
Made some quick bullet lists:
EDS (diagnosed as hypermobile)
• 9/9 of Beighton score
• Extreme fatigue
• Muscoskeletal pain
• Thin stretchy hyperextensible skin
• Skin that sags / chicken skin
• No atrophic scarring
• Mitral Valve prolapse diagnosed at 16, no murmur
• Body temperature cold, not hot ; Resting heart rate low (45-50) ; Blood pressure low
• Large pupils
• Slow gut motility and constipation
• Florinef made things WORSE, plus acne worsened considerably
• Pressure and pain in neck and back of head and cervical spine
• Pain can be fine in the morning, but pressure develops throughout the day – drugs do not work – (only thing that helps is to apply
heavy pressure massage up the cervical and bottom half of head)
• Nausea and extreme discomfort as a passenger in a car
• Car sickness and vomiting as a child
• No diarrhea, no acid reflux
• Feelings of being overwhelmed
• Change in personality
• Problems with attention
• Polyuria about once a month, but not incontinence
• Impaired vision (from POTs) – partial to complete blackout from squatting, lying down, sitting to standing
• Issues with memory, concentration and other thinking skills that do affect job performance
• Head can feel very heavy – too heavy to lift up
• No loss of bladder control
• Went to see TMJ specialist – CT scan showed extremely narrow upper air passageway (don’t know what this means, if anything)
Mastyocytosis??? (not diagnosed)
• But baseline tryptase low, not high
• Flushing on chest (will attach photo)
• No flushing on face
• Frequent urination once or twice per month, not constant and not incontinence
• No anaphylactic shock
Mental symptoms (symptoms intermittent, unpredictable, feel pretty extreme)
• Mood swings
• Extreme anxiety
• Mental clouding
• Insomnia (since childhood)
• Overwhelmed feelings/Nerves shot
Abnormal lab results
• Consistently low platelets (genetic consult suggests neutropenia as the cause)
• Consistently low neutrophils
• High aldosterone/renin ratio (x 2)
• Osteopenia, but only in neck
• Low resting heart rate
• Low blood pressure
• Low phosphate
• Elevated norepinephrine (tested after 7 days off Adderall)
Drug history (some of the more memorable ones)
• Adderall has worked to cut down fatigue
• Complete symptom relief with Cymbalta but it only lasted 10 days
• Glutocoritcoids (Florinef) did not help POTs/ Neck pain pressure worse
• Wellbrutin – terrible response
• Seroquel – blackouts at very low dosage
• No positive response to SSRIs
• Spyro – did not help horomonal acneMarch 3, 2015 at 1:41 am #5328
A couple skin pictures:
-a picture of the rash I often get on my chest (it’s not a sunburn)
-a picture of the red plugged “bumps” on my legsMarch 3, 2015 at 2:24 am #5329
I did find some extensions shots.
And also attaching one from a CINE MRI I had.
CaroMarch 3, 2015 at 11:02 am #5330Dr. DianaKeymaster
Sadly, I think most of us can relate to most of your symptoms. I wanted to mention that I believe this is how high (and low) CSF pressure can get missed — the symptoms often get lost in the mix. I, too, didn’t have incontinence, but had the other symptoms of high intracranial pressure (as did my son). In many EDS/POTS patients, some neurosurgeons encourage tethered cord surgery to reverse (or slow the development of) incontinence. Instead, this can be high ICP causing it. My daughter had few symptoms of high intracranial pressure beyond headache (and her head circumference grew much faster than her body). Her headaches went away overnight. In other words, we don’t have to have all symptoms of high ICP. Make sense? 😉March 4, 2015 at 11:56 am #5331Mog the DogParticipant
Can someone tell me more about the type of incontinence that goes along with the increased intracranial pressure? I have had a few episodes that involve the feeling like my bladder just starts having spasms along with a strong urge to urinate followed by panic that I can’t get my pants unzipped in time. Most of the time I make it, but there have been several times that I have stood next to the toilet with pants still on and urinated the entire contents of my bladder all over myself because I couldn’t quite make it to the toilet in time. This symptom has come and gone over the years.March 7, 2015 at 3:00 pm #5346
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