January 26, 2015 at 10:31 am #782
i’m very glad to be here with u, also if desperated because of my condition.
It’s about two years that my life is still.
I started with subtle symptoms that then became very horrible and, despite a negative mri, I have an intracranial HYPOtension.
The things seem sure and i was asking if a ctd, such eds, can give this problem.
I know about hypertension, but i was asking about hypotension.
I’m not sure i have a ctd, it’s a doubt which is following me but now I’m concentrated on this csf problem.
It seems there is NO leak, but perhaps an absorption problem.
I have a particular conformation, with a dural ectasia (caused by spina bifida, it’s typical), which allows the csf to pool and maybe it explains why my csf doesen’t flow well.
I have found a very very great doctor who is willing to try to help me.
I would only like to know if there could be some correlation with a ctd i have still to search. A doubt.
I have had a retinal detachment (seems unrelated to my whiplashes), i have tendinosis, a little joint instability.
But i underwent a lot of surgeries and I heal pretty fast, i healed on my own also after a traumatic dural rupture after a surgery, years ago.
Now no holes found. Not wonderful scars but i’m able to heal quickly also with my foot ulcers, which are caused by the neurological deficit.
That doctor gave me diamox to try and it doesn’t help – it seems to indicate, by the way I feel, hypotension.
I haven’t Chiari or cervical instability.
I have all the symptoms of hypotension (included the great neck stiffness) and I would like to understand the way in which connective tissue plays a role in csf absorption.
So, only a Grateful question.
Thank you and best whishes… Deeply.January 26, 2015 at 10:34 am #5266
Excluded ccsvi and pots. have autoimmune thyroid disease…January 26, 2015 at 12:13 pm #5267
Sorry again… All started to become harsh when my extreme motion sicknesse, never have had before, started. Neurologists say it’s not only typucal of hyper, but also an hypo can give it.January 27, 2015 at 2:04 pm #5268Dr. DianaKeymaster
Hi Amarilis, Honestly, I don’t think there is anything in the literature about how connective tissue disorders could alter CSF absorption. I’m interested to hear if someone else can find something! I hope you saw in my book about how our CSF leaks can be intermittent, positional, and can be missed on imaging, though. I know of too many patients who were told they didn’t have leaks, only to find them later. I also mentioned a sad case about a patient whose leak was at her tail bone and did not show up on imaging, either. 🙁 Some of these leaks (“occult”, meaning imaging doesn’t always pick them up) can be secondary to the combination of defective connective tissue and high ICP. If this is happening to you, and if they DO find a leak, after repairing the leak, your ICP can then go too high again. How frustrating, right? I have a leak through my nose that is evident only when my pressure is too high. Some of us leak through our ears. These sorts of leaks can often heal spontaneously when the pressure is reduced with Diamox. I don’t think you are alone trying to figure out if you have abnormal absorption, or an occult leak. Please keep us posted! 🙂January 27, 2015 at 2:12 pm #5269
Thank you. I know leaks are sometimes … Hidden. Hope to find a way out!January 27, 2015 at 2:13 pm #5270
Ps i have tried diamox – two a days. But it didn’t help…January 27, 2015 at 2:23 pm #5271Dr. DianaKeymaster
Please be sure you and your doctors have ruled out the other reasons for Diamox failure, OK? I have them all listed under “Diamox Pearls” in the book. I can’t tell you how many folks thought Diamox wasn’t working for them, only to realize that it wasn’t prescribed correctly (the wrong form, the wrong dose, their CO2 was too low, etc). The only other reason I’ve seen for it to not be effective is if the pressure is just too high for Diamox to make a significant dent. This happened to me recently (when I got out of the hospital). My pressure was clearly high (I felt like my ear drums were going to explode!), but Diamox didn’t make a difference for a while. As my inflammation calmed down, the pressure reduced, Diamox was then able to make the difference for me. Finally! Another thing that may help you figure out if your pressure is truly low is to look at your head circumferences in the first 18 months of life, should you have those. If you are prone to high ICP, your head circumference should grow too fast, when compared to your weight and height. It’s not a guarantee, but can suggest a tendency to have high pressure. Does that make sense? If your pressure is indeed low, I wonder what your doctors are proposing to do to help you? Do they have any ideas? 😉January 27, 2015 at 3:43 pm #5272
Thank you diana. You are very kind. They suggest a bp (anyway surgery is too dangerous because of the previous ones) and the uncertainty of imagines. A low volume one, I think.
Here in my country there is no small release diamox.
I have read about pressure mesurement in a non invasive way, but in europe it seems they don’t do it – simply using mri.
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