Author Topic: Dr Carroll-Stanford Uni - CSF leaks - Intracranial Hypotension - POTS-like symptoms POTS  (Read 32188 times)

Emmerson Elliot

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Dr Ian Carroll, Anesthesiology Dept. Stanford University
Great clip - great info - another great doctor who really gets it.


If you have orthostatic intolerance, fatigue and headaches then this is essential viewing.

If your symptoms improve after 24-48 hours of lying flat - then you are a contender for CSF leaks as the cause of your symptoms and treatment interventions may indeed help you.

Dr Carroll gives his email contact at the end of the clip and kindly sends you a list of doctors who are onto this treatment and more helpful infomation.

CSF leaks can cause similar symptoms to POTS and are most common in people with CTDs including EDS.


CSF leaks are often missed on conventional MRI and some doctors still think they are rare. They are not - just under-diagnosed. apparently.

CLICK HERE TO VIEW THE CLIP:


https://youtu.be/QyvWxobqKrc





EE
« Last Edit: July 22, 2017, 05:47:43 AM by Emmerson Elliot »

Emmerson Elliot

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Re: Dr Ian Carroll Stanford Uni - CSF leaks - same symptoms as POTS
« Reply #1 on: February 13, 2017, 07:22:53 PM »
Following on from the YouTube clip by Dr Ian Carroll on CSF leaks above   -

Please SCROLL UP
to see the link to the YouTube clip by Dr Carroll

.....,,,...........

Neurological and spinal manifestations of the Ehlers-Danlos  Syndromes.
Henderson et al 2017

American Journal of Medical Genetics 

Henderson, Bolognese, Francomano, etc
Link to full free article



http://onlinelibrary.wiley.com/store/10.1002/ajmg.c.31549/asset/ajmgc31549.pdf;jsessionid=BEB0AB2BEC080E9BCDAF7DCE4A33F74F.f03t02?v=1&t=jb4jwjui&s=fe37d4b2850057234bbd2ff85325a9f9a0f119ee


 December 2017 Update
This link had stopped working but has now been updated with the correct link
Thanks to Amber Ella








/----------------------/-----/-///////////

 Another excellent YouTube clip from Dr Ian Carroll,

 Professor of anaesthesiology at Stanford university

Mar 4, 2017 Dr. Ian Carroll (Anesthesiology / Pain Medicine) of Stanford University in a Q & A session on spinal CSF leak (intracranial hypotension) hosted by Spinal CSF Leak Foundation during Leak Week March 2 2017.

https://m.youtube.com/watch?v=04jSbxYdbbY&t=343s


EE





        ---------------------------------------------------




This short article explains Intracranial Hypotension Syndrome (IHS) really well - and explains why it gives you headaches, hyperacousis, photophobia, and other symptoms related to being upright....

http://www.jpma.org.pk/full_article_text.php?article_id=3228


Pathophysiology and management of Spontaneous Intracranial Hypotension  A Review

Journal of  Pakistan Medical Association
January 2012

Nadir Ali Syed ( Department of Neurology, South City Hospital, Aga Khan University Hospital, Karachi, Pakistan. )
Farhan Arshad Mirza ( Medical Student, Aga Khan University Hospital, Karachi, Pakistan. )
Aqueel Hussain Pabaney ( Department of Neurology, Aga Khan University Hospital, Karachi, Pakistan. )
Rameez-ul-Hassan ( Department of Neurosurgery, Aga Khan University Hospital, Karachi, Pakistan. )


Abstract
Spontaneous Intracranial Hypotension is a syndrome involving reduced intracranial pressure secondary to a dural tear which occurs mostly due to connective tissue disorders such as Marfan's Syndrome, and Ehlers-Danlos Syndrome. Patients with dural ectasias leading to CSF leakage into the subdural or epidural space classically present with orthostatic headaches and cranial nerve deficits mostly seen in cranial nerves V-VIII. Diagnosis of SIH is confirmed with the aid of neuroimaging modalities of which Cranial MR imaging is most widely used. SIH can be treated conservatively or with epidural blood patches which are now widely being used to repair dural tears, and their effectiveness is being recognized. Recently epidural injection of fibrin glue has also been used which has been found to be effective in certain patients.


Keywords: Intracranial hypotension, Marfan's syndrome, Dural tears, Orthostatic headache, Cranial MR imaging.




UPDATE

I have had a reply from Dr Carroll - it looks like my MRI DOES probably indicate IHS - intracranial Hypotension Syndrome
 and he has kindly sent me a research paper about Venous Hinge that fits my MRI.... and says he would treat me at Stanford!!


Do watch his clip folks, I recommend it.
Late update August 2017
 I understand that Dr Carroll has closed his books to new patients for the moment


 This service has been recommended highly as a place to get a second opinion for neurosurgical issues by posting images of your MRI to them online.  I have not tried it yet but I have looked at their website and it looks really clear and easy to do there is a link to click to post your images and there's also an email address provided if you need more information

 They charge $100  for the second opinion -
I assume that is US dollars   In 2017

https://www.barrowneuro.org/patients-families/get-a-second-opinion/

 So far I have had one strong recommendation from a person who has used them I will update if there's any more info from people who have used them - but the website looks pretty good   


« Last Edit: December 24, 2017, 02:27:06 AM by Emmerson Elliot »

Emmerson Elliot

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 The role of the craniocervical Junction in Craniospinal Hydrodynamics and Neurodegenerative Conditions

 Neurology Research International 2015

 This is very clear and well written and a very good introduction to this topic.

 Link to the full free article by Michael Flanagan
 American chiropractic neurology board

 https://www.hindawi.com/journals/nri/2015/794829/


EE




https://www.hindawi.com/journals/nri/2015/794829/




EE
« Last Edit: March 12, 2017, 10:15:30 PM by Emmerson Elliot »

Emmerson Elliot

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For more information on joint hypermobility, EDS, connective tissue diseases, see the EDS symptom list here

http://invisibleillnessforum.com/index.php/topic,10.0.html




27 Good Reasons to Get an EDS Diagnosis


http://invisibleillnessforum.com/index.php/topic,13.0.html




FACEBOOK GROUP LINKS



Here are some good facebook groups to join for discussion and to ask questions and meet others who are looking for information resources and answers. Facebook groups to join to learn more about POTS, Fibromyalgia, ME/cfs, chronic fatigue syndrome, EDS, MCAD, CSF Leaks, IH, SIH, Chiari 1,  Retroflexed Odontoid, Empty Sella, Venous Hinge and CCI/CCSVI etc.





CSF LEAKS INTERNATIONAL - Cerebrospinal fluid leaks, Intracranial Hypotension, RO, Empty Sella, CCI and Chiari etc group

 https://www.facebook.com/groups/1765716217089016/
Feel free to post your MRIs there for discussion and learning.



TO find an upright MRI near you:


Upright MRI CINE MRI worldwide locations
https://www.facebook.com/groups/683158415164329/

Be sure to ask for an MRI of BRAIN AND FULL SPINE - UPRIGHT if possible as that is needed to rule out Chiari.
And ask for your OWN copy of the MRI too keep for future reference - ask at the time of testing is the easiest time to get this.

Remember - an MRI MAY show CSF leaks but it does not always. If they are not apparent on MRI then an ultrasound or CT myelogram or other testing may be needed to detect them.






A group JUST for discussing all aspects of RO -  Retroflexed Odontoid & Pannus
Anyone interested in discussing or learning about that topic is welcome even if you don't have your MRI results yet.

https://m.facebook.com/groups/1493270850693659?tsid=0.07276416919194162&source=result




POTS/ME/CFS/FM/EDS/MCAD/Chiari etc articles and info
https://www.facebook.com/groups/588817404473821/



Ehlers-Danlos ILLUSTRATED Support Worldwide EDS/POTS/MCAD/Chiari/RO/CCI etc
https://www.facebook.com/groups/598876153485778/



EDS Australia and New ZealandEDS, POTS, ME/cfs, fibro, MCAD, CHIARI etc
https://www.facebook.com/groups/979304358808822/


POTS & ME/CFS EDS Victoria fibromyalgia, MCAD, CHIARI etc

https://www.facebook.com/groups/872961302780236/

POTS & EDS NSW, QUEENSLAND & N.T. EDS/ POTS/MCAD/FIBRO/ME/CFS (Australia)
https://www.facebook.com/groups/985101241523050/


POTS & EDS Tasmania EDS/POTS/MCAD/FIbro/ME/cfs/ Chiari RO etc
https://www.facebook.com/groups/101200326888887/


POTS & EDS WA & SA - Western Australia and South Australia  EDS WA & SA - Western Australia and South Australia  EDS, POTS, ME/cfs, fibro, MCAD, CHIARI etc
https://web.facebook.com/groups/1608955736021977/






Living with Fibromyalgia -Support

https://web.facebook.com/groups/1598653707067743/



Young ME/CFS & Fibro 20-35
https://web.facebook.com/groups/347477352341783/





And for a great place to see published pictures that illustrate normal and abnormal range of movement these groups are useful. (Sadly people who often are or were undiagnosed in their lifetimes.)
These groups serve a very serious purpose. Many doctors miss the physical signs of EDS etc so this is a gret way le learn how to spot the signs .... you may save someone's life.....


Celebrities with Invisible Illnesses

https://web.facebook.com/groups/1695551190657872/


David BOWIE had Ehlers-Danlos Syndrome and Dysautonomia
https://web.facebook.com/groups/590995447733405/


Elvis Presley had Ehlers-Danlos Syndrome and POTS

https://web.facebook.com/groups/866898230046654/


To see pictures relating to Elizabeth Taylor
Elizabeth Taylor had Ehlers-Danlos Syndrome and POTS

https://web.facebook.com/groups/901553563227135/

(One relative of Elizabeth Taylor is in the group and they do indeed have EDS genes in the family.)






If you have muscle or joint stiffness as well or instead of hypermobility there is this group:

Stiff Zebras
https://www.facebook.com/groups/455374384560623/





IV Intravenous access, PORTS and PICCS for POTS, EDS, ME/cfs and FM

https://www.facebook.com/groups/1502494416657717/?ref=br_tf






AND To find informed, aware and supportive DOCTORS near you




Good North American doctors for
https://www.facebook.com/groups/1438285386415297/



Good Australian Doctors for....
https://www.facebook.com/groups/287952358017187/



Good European Doctors (Including Britain and Ireland) for ME/cfs /FM/EDS/POTS/CHIARI/MCAD/Hashi's/RA
https://www.facebook.com/groups/372374862916395/




EE
« Last Edit: December 13, 2017, 09:42:21 PM by Emmerson Elliot »

Emmerson Elliot

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The Venous Hinge




Link to free, full text
http://link.springer.com/article/10.1007%2Fs00234-009-0518-7


The venous hinge—an objective sign for the diagnosis and follow-up of treatment in patients with intracranial hypotension syndrome


In patients with Intracranial Hypotension Syndrome (IHS), we observed reduction of the angle between vein of the Galen (VOG) and internal cerebral vein (ICV), which returns to the baseline after treatment...
link.springer.com







EE
« Last Edit: March 08, 2017, 05:56:31 PM by Emmerson Elliot »

Emmerson Elliot

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Deformative stress associated with an abnormal clivo-axial angle: A finite element analysis

Fraser C. Henderson, William A. Wilson,1 Stephen Mott,2 Alexander Mark,3 Kristi Schmidt,4 Joel K. Berry,5 Alexander Vaccaro,6 and Edward Benzel7

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940090/?report=classic

Abstract

Background:

Chiari malformation, functional cranial settling and subtle forms of basilar invagination result in biomechanical neuraxial stress, manifested by bulbar symptoms, myelopathy and headache or neck pain. Finite element analysis is a means of predicting stress due to load, deformity and strain. The authors postulate linkage between finite element analysis (FEA)-predicted biomechanical neuraxial stress and metrics of neurological function.


Methods:

A prospective, Internal Review Board (IRB)-approved study examined a cohort of 5 children with Chiari I malformation or basilar invagination. Standardized outcome metrics were used. Patients underwent suboccipital decompression where indicated, open reduction of the abnormal clivo-axial angle or basilar invagination to correct ventral brainstem deformity, and stabilization/ fusion. FEA predictions of neuraxial preoperative and postoperative stress were correlated with clinical metrics.


Results:

Mean follow-up was 32 months (range, 7-64). There were no operative complications. Paired t tests/ Wilcoxon signed-rank tests comparing preoperative and postoperative status were statistically significant for pain, bulbar symptoms, quality of life, function but not sensorimotor status. Clinical improvement paralleled reduction in predicted biomechanical neuraxial stress within the corticospinal tract, dorsal columns and nucleus solitarius.


Conclusion:

The results are concurrent with others, that normalization of the clivo-axial angle, fusion-stabilization is associated with clinical improvement. FEA computations are consistent with the notion that reduction of deformative stress results in clinical improvement. This pilot study supports further investigation in the relationship between biomechanical stress and central nervous system (CNS) function.


Keywords: Chiari malformation, clivo-axial angle, craniocervical junction, deformative stress, finite element analysis, stretch myelopathy



Excerpt

signs of cervical myelopathy (sensorimotor findings, hyper-reflexia); second, bulbar symptoms (lower cranial nerve dysfunction, respiratory disorder, changes in vision or tracking, auditory vestibular symptoms, dysautonomia) listed in Table 1;

there is support in the literature that memory is affected with alterations of the brainstem reticular activating system,[54,55] sleep abnormalities,[56] altered visual tracking or modulation of audition,[57,58] and chronic pain.[59]

Mechanical compression at the cervicomedullary junction occurs in Chiari 1 malformation,[2,6,10,16,61,62] achondroplasia[63–65] ; or as a result of basilar invagination, clival hypoplasia, anterior indentation of the pons, upward displacement of the brainstem or anterior displacement of the foramen magnum.[3,6,16,24,66,67]

Table 1

Brainstem Disability Index

The following 20 symptoms may be referable to pathology at the level of the brainstem.

Please indicate yes or no whether your child has any of the following symptoms on a recurring or chronic basis.

Double vision
Memory loss
Dizziness
Vertigo
Ringing in the ears
Speech difficulties
Difficulty swallowing
Sleep apnea
Snoring or frequent awakening
Choking on food
Hands turn blue in cold weather
Numbness in your arms and shoulders
Numbness in your back and legs
Gets tired very easily
Unsteady walking
More clumsy than you used to be
Urinates more often (every 1-2 hours)
Irritable bowel disease or gastroesophageal reflux disease
Weaker than you would expect in your arms or hand
Weaker in your legs

5% for each positive response, 0%-100%



EE
« Last Edit: March 17, 2017, 08:01:49 AM by Emmerson Elliot »

Emmerson Elliot

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For anyone interested in learning more about the anatomy of the brain and CSF flow I have found a few useful you tube clips

There are plenty more clips out there but I found this a good introductory sequence.

Just take is slowly and don't try to remember it all at once - this takes doctors years to learn -  so watch one a day or a few occasionally and you will start to pick it up  - very interesting of course.




1 Tad Wanveer clip on normal  CSF  flow in a diagram
short 6 mins - good animated diagrams - good intro

https://www.youtube.com/watch?v=sqLb-lzbbWA


2 More in depth and thorough

types of brain  scans, brain anatomy  and CSF

shows what axial coronial and sagital images mean  - pause it at this point to see it clearly.

https://www.youtube.com/watch?v=k5JpjHo6Gxo



3 Neuroanatomy brain dissection

see anatomy on real human brain - very, very helpful but also a bit squishy of course.

WARNING   - shows a REAL human brain - some kind person donated their brain so that we can learn from this - my mother did the same when she died.)
It is more about general brain anatomy than csf but very intereting and useful to persist to see the venticles as they are in real life.
 
https://www.youtube.com/watch?v=_aCCsRCw78g


4 Even more squishy but totes fascinating  - shows how SOFT the brain is in real life and therefore whey CSF is SO important  - hello brain fog???
But seriously be WARNED that this shows a REAL HUMAN BRAIN removed from a recently-deceased human.
(Some kind person donated their brain so that we can learn from this - my mother who was very ill due to EDS did the same when she died.)

Excellent clear view of the cerebellum at the 3/4 mark.
https://www.youtube.com/watch?v=8zsSxrlIR_c




5 Anatomy on a plastic model brain - very clear explanation of the parts of the brain with no real human body parts involved - you get a good clear view of the cerebellum (for Chiari) and the pituitary gland -  but it is very detailed.
(Note the red hands of the demonstrator - MCAD? Reynaud's?   ...and he also has evident joint hypermobility in his thumbs.

NOTE ALSO  at the very end the 'Olive' - a part of the brain that is responsible for "registering the stretch of muscles" !!!)

Stiff zebras pay attention? )

https://www.youtube.com/watch?v=Ma7fEF55JXs
« Last Edit: July 12, 2017, 07:11:50 AM by Emmerson Elliot »

Emmerson Elliot

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 Another excellent YouTube clip from Dr Ian Carroll,

 Professor of anaesthesiology at Stanford university

Mar 4, 2017 Dr. Ian Carroll (Anesthesiology / Pain Medicine) of Stanford University in a Q & A session on spinal CSF leak (intracranial hypotension) hosted by Spinal CSF Leak Foundation during Leak Week March 2 2017.

https://m.youtube.com/watch?v=04jSbxYdbbY&t=343s


EE

« Last Edit: December 13, 2017, 09:40:16 PM by Emmerson Elliot »