What could be wrong?

[Barbara]

I have to admit that the Philadelphia collar felt very strange to me indeed, when they first fitted it. My head was hung with chin forwards at the time, so when they put it on I felt ‘all trussed up!’ but never-the-less I persevered and I’m SO GLAD I did because, I can now easily hold my head in a better position for cerebro spinal fluid flow. Now, years later, it feels so natural being in the correct position and my body is certainly functioning much better – I have come on leaps and bounds since having this collar fitted, in many ways. It is one of the best treatments I’ve had.
Regards
Barbara
(UK)

[Barbara]

my vision has got worse, I see static, flashing lights, after images and fireflies.

Hi Brenda,
I would try and see a neuro-opthalmologist about these symptoms. I’ve just had an appointment with mine and he asked me specifically about the flashing, which I now rarely get. He was the one who spotted the swollen disk in me and prescribed the Diamox, which was a help in relieving the eye pain and pressure, etc . . . it’s so worth a try. So to recap:

Off to a Neuro-Opthalmologist for Diamox to get the intracranial pressure down
Philadelphia collar to restrict movement whilst repair takes place and allow better CSF flow
Vitamin C throughout the day (with increased protein) to help form good collagen and repair ligaments and hopefully help slow down or improve scoliosis
Epsom Salt baths twice a week to help replenish Magnesium levels often depleted when people take pain killers or antacids regularly
(the body will only absorb what it needs)
Ensure at least the recommended daily requirement of salt (2-3 grams) is consumed daily.
Get your vitamin D levels checked, we are often deficient

To answer your pm questions:
Help in the UK was very difficult to obtain. I only managed to get to a spinal injuries unit after studying anatomy, MRI & X-ray reading, discovering the anomalie myself, and then chatting over the internet to a lovely neurosurgeon in Germany who had written papers on CCI – he advised me to get to a spinal injuries unit.

Don’t quote me on this, as I’m a little hazy at the moment but I think it was Prof Christopher Mathias, of UCLH London, who advised me to see Prof Grahame (also in London) to see about the possibility of EDS involvement – but I’m not really hypermobile, nor do I have stretchy skin like some, only slightly bendy legs (scoring 2 on the Beighton scale) plus the autonomic involvement I think made me qualify for Classic EDS on the new (Brighton) scale. My mum could do the ‘thumbs on wrists’ thing but not me, or any of my children.

Regarding Chiari involvement, at The Chiari Institute in New York, they said I had only ‘low-lying cerebellar tonsils’ which is what some people refer to as Chiari 0 – BUT, I know first-hand that this fact plus the Cranio-cervical Instability (CCI) they diagnosed, spells TROUBLE! Directly after delivering their diagnosis, they said I needed fixation surgery.

Regards
Barbara
(UK)

[Brenda]

Hi Barbara

Your posts are very helpful and I wonder if you could give me some additional advice. My problems started after a fall where I hit my head on a door but I couldn’t get anyone in the medical profession to realise just how much head, neck and left shoulder pain I was experiencing afterwards. Neurosurgeons just picked up on a ‘retrolisthesis’ at C3/C4 which showed on my scans. As my pain and other nervous system symptoms continue to escalate, I have now been advised to have an operation to correct the C3/C4 injury but have always felt that my problem was higher up at the CC junction because my head feels as though it is sliding backwards and forwards on my neck and injuring something over and over again. I have had an upright scan done privately but can’t get a diagnosis based on this even though the radiologist said it showed a Chiari 0, cerebella tonsillar ectopia and an abnormality at the top of the brain stem. Do you know anyone in the UK with knowledge of CCI who is able to look at my Upright MRI? I know you had to go to the Chiari Institute to find out what was happening to you. I have it available on a CD.

After reading your advice, I have asked the hospital in London for a Philidelphia collar and they have offered a Miami collar. Is this is the same thing? I’m also due to see a Neurologist this week at the hospital to check my autonomic nervous system and wondered if you have any advice about questions I should ask to find out if I have EDS.

Best wishes

Brenda

[Barbara]

Hi Brenda,
Quick reply, as I’ve loads to do (lol, haven’t we all!?)

I’d forgotten until the other day (when I found it in a cupboard) that the Orthotic dept tried me with a Miami collar once, following attendance at the spinal injuries unit for my yearly review. I suppose it looks more trendy, in todays fashion conscious world but in practise it’s far from ideal. I tried it on at the orthotics consultation and knew straight away, that it wasn’t as supportive at the back of my neck as the Philadelphia collar, especially for my upper neck, never-the-less they insisted I take it home and try it, which I did but it was no good, not a patch on the Philadelphia one. I notice you too have loss of lordosis in the upper neck, so I think the Philadelphia would be much more beneficial.

Also from a funding point of view, the Miami is about £100 dearer than the Philadelphia so, unless orthotics are on commission, for the NHS the Philadelphia is also more financially appealing.

I wrote a post a while ago, rating and comparing some of the other collars I’d tried and tested:-

http://prettyill.com/forums/viewthread/575/#2883

Regards
Barbara
(UK)

[Brenda]

Thank you Barbara. I asked for a Phiidelphia Collar after reading your postings but they have told me I need a Miiami one for some reason. I’ll try to change it back but, if not, perhaps just buy one as recommended.

Do you know any Neurologists or other Consultants in the UK who know about EDS?

Kind regards

Brenda

[Barbara]

I’d get them to justify exactly why they think you need a Miami. Study the Philadelphia first, so you can field their justifications i.e. the philadelphia:-
Is a rigid collar, so offers firm support and not easily bent out of shape
Is lightweight so won’t be adding to you burden
It neatly cups the chin
It firmly supports the head
It firmly supports the neck, from all sides, especially the rear – IMPORTANT where loss of lordosis is concerned
In fact it is precision shaped for better all round support
It restricts rotation and flexion and other movements which are likely to cause further injury
It maintains a good relationship between the head and the neck, so CSF flows more freely VERY IMPORTANT if you have any kind of Chiari
It’s easy to eat and drink whilst wearing (unlike some of the other collars I’ve tried)
It’s easy to measure for, by the orthotics dept, in the first instance
It is very easy to take on and off without assistance
It is easy to clean
It is easy to fit new linings
Coolmax linings dry very quickly when washed
Coolmax linings are designed to reduce perspiration and overheating
It is certainly the most comfortable and effective of all the rigid collars I have used
The velcro fastening will last at least a year, even with 24/7 usage
It’s flesh coloured, therefore less obvious!
It’s easily covered a scarf
It’s cheaper on the public purse

I rest my case . . . . .
Lol, no I don’t have shares in the company!

[Barbara]

Professor Rodney Grahame at UCLH is the current EDS guru, he’s written a piece on the DWP website, I believe, in support of all those suffering EDS in the UK who may not be getting appropriate support.

[Author]

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