• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. B

    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    I don't know about supine with extension, it may be ok provided contrast was used & preferably the whole spine was done too, but it would be best to check with whichever neurologist you planned to see before spending money. Yes you absolutely could get the supine contrast MRI then send it...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Hi I believe all doctors would want a scan first just to rule out anything else - one person I spoke to had signs of HIGH pressure on a MRI - but Dr Ellis at least is prepared to patch based on very suggestive symptoms if the scan is normal. You would need to see him in person to get a...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    @Tella hi I am sorry you are also unwell. I was able to get the scan I needed on the NHS close to where I live. I got a GP referral to a neurologist to be investigated for a CSF leak, by printing out relevant information from the CSF leak association website & highlighting relevant symptoms...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Thanks yes I will do! And yes a water bomb is a water balloon. It is absolutely not designed to inflate by mouth! B xxx
  5. B

    Tracking CCI / AAI MRI & Treatment outcomes

    Thanks for sharing that, it is good to hear. Wow that is such a coincidence, the exact same thing happened with me when I sent my scan to Dr Bolognese (after Dr G diagnosed cranial settling). My illness was valsalva induced, & as soon as I came across CSF leaks myself I was convinced I had the...
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    Tracking CCI / AAI MRI & Treatment outcomes

    I am also looking out for anyone with a no from Dr G. I was diagnosed cranial settling & offered fusion, either C0-2 but recommended lower due to minor instability at C2-4. It was a negative from Dr B (although I know he doesn't straight off look for settling if no other instability eg...
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    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    @Marelica I wish you good luck if you do decide to go ahead with the surgery. Dr Gilete diagnosed me with cranial settling and mild instability c2-4. my imaging seems mild/borderline by comparison to others however my symptoms are not. BUT I have recently been diagnosed with a CSF leak...
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    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    @Marelica Hi and welcome! How do you feel about that and what are your plans? B xxx
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Yes, he is a neurologist in Stoke. He is on the board of the CSF leak association and co-wrote a lot of its information articles. I found him very knowledgeable & up to date with the latest research. He also examined me properly & genuinely seemed to want to help. Since becoming unwell, most...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    PS I don't think there is anything wrong with being vegan btw just that it isn't the answer here x
  11. B

    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Yes that is a Valsalva. What I would say is that I blew harder to try and inflate that water bomb than I ever did giving birth 3 times, and I also have diagnosed EDS so my connective tissues (including the dura) are weaker than the average person which predisposes to CSF leaks. I also did a...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    The symptoms (see above "Spinal CSF Leaks have a troubling similarity to POTS") are typically splitting orthostatic headaches & neck pain, lightheadedness/dizziness/presyncope, nausea/vomiting upright, blurred vision, cognitive impairment & generally feeling extremely unwell upright, that is...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Yes, everything changed for me too immediately with that one event that sounds so silly! So many times people have acted like I must be making it up, how could that possibly cause such severe disability etc.. I suspect a lot of cases go undiagnosed, which is so sad when it is treatable in most...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    It is definitely an advantage if the leak site is known, such as if it is the result of either a deliberate or accidental (eg during epidural anaesthetic) lumbar puncture, however with spontaneous/minor trauma induced leaks like mine, the initial MRI contrast usually just shows features...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Yes it probably does. The brain sinks down having lost its fluid cushion, and the brainstem gets squashed. It won't account for everyone but certainly worth a look if a patient checks a few of the boxes & isn't finding any other explanations. It is certainly more easily & cheaply treated than...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    They go off a combination of these (personally I have not had a LP as it has poor sensitivity & has a higher chance of causing a leak in EDS patients, also they are being less commonly done now in the UK unless there is a suspicion of high pressure or other indication), plus also response to...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    xxx sadly they didn't - I came across it myself by watching Dr Carroll's video. I then presented material from the CSF leak association highlighting my symptoms, inciting event & connective tissue disorder to my GP & asked for a referral to investigate a possible leak. I had a contrast mri on...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    Spinal CSF Leaks have a troubling similarity to POTS – adapted from Ian Carroll’s 2017 presentation. CSF Leak POTS • Feel worse when upright •...
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    A TREATABLE CONDITION TOO IMPORTANT TO MISS

    This is for everyone with orthostatic intolerance/POTS, particularly if it was of sudden onset, associated with upright head/neck pain & nausea, and typical treatment for POTS has had no or minimal effect. Please also continue reading if you have or suspect a hereditary connective tissue...
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    Dr David Tuller to give a talk in Oxford Oct 19th: ME and the UK Medical Establishment

    Thanks for sharing! does anyone know if this will be available to watch online at some point? B xxx
  21. B

    Questions for Jen Brea

    Yes that's right, although more extreme. I tried to blow up what I thought was a balloon, but it was actually a water bomb. I blew so hard I passed out. I was completely well with no symptoms at all prior to that, but since then I have never really been able to be upright due to horrible...
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    Questions for Jen Brea

    @JenB i am so sorry to hear about your csf leak. i am currently trying to figure out if my issues are due to a c sf leak (as my onset was precipitated by a forceful valsalva, before which I was 100% healthy & instantly disabled after) or cci, specifically cranial settling which Dr G diagnosed...
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    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    That's a very valid point, but I do not believe CCI to be the only cause of illness for this population, some people will have normal anatomy - just like not everyone with symptoms suggestive of cancer will actually turn out to have cancer on testing. If you took 100 women with a breast lump...
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    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    I'm not "blaming" Dr G as such, & am very interested in going there for surgery myself, I am just concerned that not one single person sending in their scans has been told they are normal. Surely statistically some peoples' will be. Perhaps these people are simply not posting, but I would really...
  25. B

    CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

    I believe the current cost is about 60k-70k euros depending on the exact procedure, and it is in Spain. B x
  26. B

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @jeff_w I have been offered a trial of a halo brace in order to help determine if surgery will benefit me. Do you know, or was it discussed with you at the time, if having your head pulled up invasively could potentially cause or worsen vertical instability if this turns out not to have been...
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    Tracking CCI / AAI MRI & Treatment outcomes

    I had no problems with my jaw until trying very gentle upwards traction on myself - I have been diagnosed with cranial settling by Dr Gilete. I placed my hands around the side of my head, partly under my jaw, & lifted. Since doing that the right side of my jaw has been clicking when I eat. It is...
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    Tracking CCI / AAI MRI & Treatment outcomes

    @Julia_S thanks, that is helpful to know. I brought it up when I was there & he said it wasn't his usual practice but I could try it. Now, maybe I think I wouldn't, due to cost, possible further damage if I didn't have the surgery, & possibility of missing out on a beneficial treatment if I...
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    If we have low blood volume where does it go?

    Same here, but I've been like that all my life even prior to illness. When I did a 24hr urine collection I looked at the 3.5 litre container, & said this will be full in an afternoon, where am I supposed to put the rest of it?! I had to get 3 containers. Good luck with the Florinef...
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    Tracking CCI / AAI MRI & Treatment outcomes

    Thanks that is great to hear! I am both excited and nervous in equal measure. It is such a massive gamble to pay all that money and lose all movement in my neck if it doesn't work, but without trying I will never know. I think for me it is less clear as my neck radiology really doesn't look so...