Do you have CCI, Chiari or Tethered Cord? The Symptoms to Look Out For with Long Covid or ME/CFS
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- čas přidán 21. 07. 2024
- In this film, the second of a short series, Dr Asad Khan and I talk to Dr Jen Curtin, a specialist in ME/CFS and associated structural disorders. In the first film - link here:
• The role of CCI, Chiar...
we asked what cranio cervical instability, the chiari malformation and tethered cord conditions were, and why they might be associated with Long Covid and ME/CFS.
In this film we’re going to discuss the symptoms, and what the red - or green flags might be to determine whether you might - or might not be suffering from one of them.
In the next film in the series we discuss the investigations required to ‘work up’ the condition, and do a deep dive on the treatments, as well as what the prognosis might be.
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The Long Covid Handbook (Feb 2023) by Gez Medinger & Professor Danny Altmann (and published by Penguin Books) is now available in paperback, ebook and audiobook. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition to date, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. It is available from the following links.
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb - Věda a technologie
Handwriting is another clue. When I first got sick ,my handwriting would completely change from one day to the next
I haven’t done an MRI to check for a gap in the cerebellum and the skull. But what I can say with full conviction is that since day 3 of the acute phase of covid infection there is this pain in the brain stem/cerebellum area that has continued to last for seven months today and counting. It usually gets triggered when walking. No points for guessing- this pain did not exist before I got covid.
The Wuhan strain infection caused dizziness affecting the brain , even if just coughed I felt lightheaded dizzy . The reinfection I had from last year didn't have that. I don't think your brain just moved too . I would be cautious with this claims
@@theancientsancients1769 what I meant was that the pain is so unique to covid and I’d never experienced something like this before. In all likelihood the MRI will confirm the brain hasn’t moved😂.
Me too but cranial nerve pain too
I've had long covid since March 2020 and an MRI found a brain lesion in my pituitary/sella region, which appears benign and will be regularly monitored by a Professor specialising in the endocrine system. I think it's worth having a brain/spine scan if any sufferers are concerned. I was referred due to headaches, excessive sweating and vision changes. I hope this helps some.
I really can't believe how accurate this is....I really can't believe this is amazing x
Gez, she does a wonderful job explaining these conditions. Are we able to download the reference and checklist. By the way, I really like your ending tag line of “look after yourselves “ as this is key in this journey.
Thank you, Gez! I think this is part of what's going on with me since Covid in March 2020 that just flared up, presenting as all kinds of symptoms related to the autonomic NS - heatrate & BP wild fluctuations, A-Fib, dizziness, issues with eye coordination, etc.
Well, now l can go along to my chiropractor appointment this afternoon armed with this !
My long hypermobile neck has a long history of causing me problems , but accumulating knowledge on where / who to get help from and management is everything, even if it means educating your primary care provider on your condition. Thank you Gez , for more l didn't know ! 😊
GEZZZZZZZZZZ you legend. This is an amazing interview and the article mentioned by Jennifer is wow, just what I need to get my care to the next level. I've just finished reading it and I have so much to discuss with my doctor and physio therapist. Thanks for finding Jennifer and having a discussion with her.
Thank Asad - he did the leg work! :)
I ordered my book can't wait to get it 🙌 🙌🙌
Congratulations on the 100th video, and the millions of lives you have helped. Thank you for your true commitment in the entire Long Covid process. To think I once thought that you were just another brilliant at breakfast type. Holy Dickens, was I dead wrong. (Charles that is!)
Thanks Melanie :)
@@RUNDMC1 I should absolutely thank Dr. Khan as well. You two are an adorable pair of LC Misfits!
Is it possible to get the link to the paper recommended to share with doctors please?
I’m so excited about the videos on this topic!! But but but…. This video ended and I was like 🤷🏼♀️ “wait what?! Tethered cord?!?” because I often wonder if I could have TCS (have a deep sacral dimple among other symptoms)
Next vid out tomorrow!
Hi! Can you talk to us about Tethered Cord? Are we talking Caudal Equine inflammation? I’ve been having Caudal Equine epidurals since I’ve had Covid in March 2020, now diagnosed with L.C/CFS/M.E. Without the epidurals I can’t walk due to chronic pelvic/ upper leg/lower back pain. Thank you!
It was mentioned that a physical therapist can put a traction and check if the pots or tachycardia improved can i try to put a neck collar and see if my pots (tachycardia when standing ) improved or not?
Since covid/jabs, I've been having these weird symptoms. Parctically all of them listed. The clicking in my neck when I move it has been driving me crazy. Didnt have that before. I also developped seizure-like episodes. Had an EEG that ruled out epilepsy and a brain MRI but the neurologist never investigated any further. I wonder if I can get access to imaging to see if my brain is well placed.
great book! Very helpful. Have you encountered anyone familiar with orthostatic hyPERtension?
I’ve seen it discussed!
Hi Gez, great content! I have been struggling with long covid(Pots,fatigue,histamine intolerance) for 7 months and I am starting to feel better. What has helped me the most is Benfotiamine and breathing exercises. I was worried about cci and also did an mri because i cant hold my head straight without getting palpitations and dyspnea,but the doctor said that my neck is a bit straight, however there is nothing to worry about and these symptoms are because of dysautonomia or anxiety..
My neck doesn't have the normal curve that a neck should have ( l have a connective tissue disorder and cervical hypermobility plus general hypermobility ...plus see long neck in thumbnail !) I was prescribed a cervical Denneroll by my chiropractor . This helps train the neck into a curve , helping relieve physical symptoms associated with cervical neck dysfunction. Might help with your symptoms , have to try it and see but just commenting that ," your neck is a bit straight," will be a radiogrsphers take on it. All the best in treatment and recovery!
@@carolenmarch7445 I am bit afraid of chiropractors and the long therm consequences of one wrong "adjustment". If I dont improve, I will probably visit a physical therapist.
@@nikolaspavlou7180 You can access the Denneroll without having an adjustment . But l get hour drift thst they tend to want to do those, as it's central yo their practice. I hope you find good relief from symptoms in which ever treatment pathway you choose .
@@carolenmarch7445 Thank you. All the best to you too!
Hello. I'm curious about your palpitations. I have Chiari (not CCI) and likely long covid - still sorting that out. But I've been getting progressively worsening palpitations and now Atrial fib. During my work up they incidentally discovered the Chiari with a CT of my head. Do you find that your head position affects your palpitations? Have you gone to physiotherapy at all? Or do you think the palpitations are still related to the dysautonomia? Thanks!
Interesting, video I also started a youtube channel to speak about this disoders I also have and what am I doing to improve my condition.
Gez, thanks a lot for your extremely helpful videos! One question for Dr. Khan would be if CCI, Chiari and/or TC would commonly by detected by a Radiologist checking a MRI? I would assume that many ME/CFS and Long Covid patients with neurological symptoms already had a brain and or spinal MRI done. What is the chance that a Radiologist would miss those "features"?
I had first MRI when I was 25 where I had Chiari already but It was not described by radiologist. I had 3 brain MRIs over last year all of them showed Chiari I. It depends how "lazy" radiologists are. :)
Many radiologists will miss it, especially since some chiari formations are subtle
Thank you for asking this. I have had two MRI scans since contracting long Covid, both of which have delivered no results (to explain the tingling all over my body). But perhaps something like this could have been missed? I could go to pick up a disc with my scans but to whom could I present them to be able to identify whether any of these features are present?
I’ve had it show up on MRI, the radiologist wrote it up as an incidental finding, and the doctor didn’t bother to tell me. It wasn’t until years later when I got copies of all the images / reports that I learned it showed up much earlier than I knew.
Very interesting. Thanks Gez. I noticed with long COVID I couldn't really move my neck upright. I went to get adjusted and I felt better. Did u experience this too?
My neck has been ok personally so I don’t think this is part of my individual puzzle
It's part of my puzzle and a neurological chiropractor is the only one helping me. After A-Fib, dizziness, racing HR, sudden high BP, and autonomic NS issues, a cardiologist hasn't done much but send me bills and want to put me on blood thinners, which I think I shall decline in favor of my natural protocols...
Interesting 🤔 After an MRI, I was told I have borderline cerebral tonsillar herniation. I have ME/CFS and POTS.
My oldest daughter has idiopathic intracranial hypertension and my youngest has hyper mobility. Both also suffer from headaches and severe fatigue.
I do wonder if we all have something going on that has not been diagnosed. It is near impossible to find a specialist who would look in to this here in Australia.
Low laying cerebellar tonsils is commonly known as Chiari zero. The degree of herniation isn’t the problem, it’s the amount of CSF it blocks causing pressure (aka IIH) and how much the cerebellum pushes into the brainstem. Reading your comments about your family I’d recommend looking at the Bighton score and the possibility of Hypermobile Ehlers Danlos Syndrome.
@@TheKayannh Thank you so much for this information.
My dad has had the same kind of symptoms I seem to be having thruout my life. Since long covid tho, they are x10. I suspect a genetic disorder like EDS or something else that eventually leads to these kind of neurological issues.
How you doing Gez? How is your LC healing?
Will talk about it on the channel soon!
Wow this sounds like me!
But how is this triggered by a viral infection?
Discussed in the first film in the series
My ex husband’s nephew had this brain herniation there’s different ones.
Is it possible for this to eventually to cause cancer in the brain stem area ? My uncle is going through this has been for several months and is currently in the hospital right now.
Don't think thre is any evidence for that , Holly. Compression of brain tissue produces neurological symptoms . Tumours can do this also as they grow , compressing surrounding tissue , but tumours in the brain stem will be very rare ( only 2% of adult brain tumours are brain stem tumours, so overall its a very, very small percentage of the population that get them) and you shouldn't worry about It. We don't know what causes them either , maybe those predisposed to neurofribromatosis but no evidence of compression or viral infection ( ie covid ) . All the best with your uncle's treatment pathway ; generally , it tends to be a low grade tumour which is good news.😊
@carol enmarch thank you
Honestly the problem with this stuff is that it's so general and could be caused by countless issues. How many people suffer from back and neck problems? To attribute to Covid seems to be stretching things a tad. Not sure it's particularly helpful and just another thing to worry about without adequate tests or treatment in UK NHS.
Why is this the only comment mentioning this? Its an idea but a very vague one.
It’s not that she’s attributing the neck problems to covid. The point is that a lot of long covid patients seem to have already had some of these issues, and that the effects of infection and/or post-viral syndrome appear to worsen them. Joint hypermobility, migraine, cervical spine issues - this constellation seems to be common in ME and LC patients, so it might give us a clue about what is going on, or ways to provide therapy for that subset of sufferers.
One thing this vid doesn’t address is the amount of people with Hypermobility spectrum disorder/Hypermobile Ehlers Danlos Syndrome who are wrongly/firstly dx with ME,fibro &cfs before going on to be dx with HSD/EDS…..and later develop AAI, CCI and Chiari etc. However, the place where I see a possible connection with covid and ME would be mast cells and tryptase release. Many people with EDS have MCAS which makes the condition worse. Mast cells releasing tryptase constantly (whether from allergy, bacterial infection or virus) is well know for damaging connective tissues such as tendons and ligaments. We also know through study via EDS that 1 in 25 people in the general population have 2-3 times the amount of tryptase releasing genes which could potentially do some real damage if you were to have LC/ME. Personally, I think if this is the case then we would also be seeing subluations (partial dislocations) in other joints too, rather than just the neck (CCI & AAI) so if anyone were to consider such a problem, I’d suggest looking into HSD/EDS first.
And yes, you are right, there are no treatments on the NHS, they don’t even recognise CCI or AAI in the UK. As for Chiari, they don’t recognise Chiari zero here either….and an upright MRI scan will set you back around 2 thousand pounds, and we only have two in the country.
EDS, Chiari, CCI, AAI, MCAS, POTS woman.
@@TheKayannh I've been dealing with those partial dislocations all my life but more so since covid/jabs and long covid. It actually got way worse. My body aches almost everywhere, all the time.
Sounds a bit like MS and Parkinson's. How would you tell? When would you refer for brain scan? Also, seems GPs referring to osteopaths should be common practice...
What happened to your ‘6 months off to rest and heal’ 😂😂 not that I’m complaining…..
6 months was a pipe dream! I’ve had two, going for one more in March
@@RUNDMC1 good luck!
0:10 " link here" I'm going to guess you still have some brain fog.
Depends on your viewing device - CZcams may not apply the link
@@RUNDMC1 the link is there now which makes this comment thread completely pointless.
I am a long hauler for 3 years now, and as far I see the covid virus totally reprogram my body, I don't worry about the pain ,brain fog low and sometimes high heart rates and a mirad of other symptoms also gut problems also neuropathy, I am just waiting for death to set me free.
So weird that we start thinking like that after awhile, especially after having complete control of our bodies all of our lives! I hope and pray this resolves,
@@barbarawarren9443
Hey Barbara ,I have a sister by that name very beautiful name, I think I am just being realistic.
Your comment made me feel better, I'm not going mad am I? 4 doses of the curse but no v word, nor will I. But the brain fog and other symptoms are bizarre I passed out in the street outside my home and broke my arm so badly I had to have reconstructive surgery and still require more I'm lucky to have a left hand at all. The whole thing stinks, me I'm waiting for retirement day, death would be a bit premature as I still have duties on earth but I'm not scared anymore. Good luck to you and hang in there