[Brenda]

Thanks Dr Diana

I must have missed this and will look it up. An EDS diagnosis seems to be one small step at a time! I asked about a Diamox trial but the Neurologist said its use for EDS/Chiari is still in the research stage.

All the very best

Brenda

[Brenda]

Hello Stray Tulip

Your story sounds very similar to mine except the trigger was hitting my head on a door whereas yours was an eating disorder. Neurosurgeons and other Consultants have been unable to explain the amount of pain I am in and it was only after having an upright scan that Chiari was recognised as well as an injury to one of the vertebra in my neck. Now, like you, I am living with pain constantly and have gone from one doctor to another without finding an answer.

Last week I saw a Neurologist who asked lots of questions about my family and examined me thoroughly. He suspects I have EDS and has asked for autonomic testing. I didn’t realise I was hypermobile until he asked me to do a few things and said that most people are not that flexible.

I suspected that a dental implant I had four months before hitting my head may have caused a weakness in my neck and a blood test showed that I was allergic to titanium and had metal toxicity. Unfortunately, I can’t have it removed yet but you could see an allergy doctor to see if anything is causing a problem. I think people with EDS are extra-sensitive.

Dr Diana’s book would help you understand more about EDS and what you can do to help yourself without having Chiari surgery. I recognised so many symptoms that she describes and think that I have probably always had this syndrome without any real negative effects until it was triggered by trauma.

Best wishes and hope you find some answers.

[Brenda]

Hi Rene

Sorry to hear that you are in so much pain and hope you find an answer soon. Dr Diana’s book suggests a way forward and I see that you’ve downloaded it.

Did your Mum also get an EDS diagnosis? If so, I would be interested to know how they came to this conclusion if she is not hypermobile. I have seen a Rheumatologist who thought that, as I didn’t have hypermbility I couldn’t have EDS. He didn’t really take into account that it was in my family.

Best wishes

B

[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

[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

[Brenda]

Hello Rene

I hope that your Neurosurgeon helps you if you have Chiari. I have been diagnosed with Chiari 0 and cerebella tonsillar ectoptia but my Neurosurgeon doesn’t think that it is causing a problem with CSF flow even though the Radiologist said it was blocking the foramen major. I would be interested to know how you get on.

Now I have constant pain in my head, neck and left shoulder which stops after a while when I first lie down at night but I am woken sometime between 2-6 hours later by excruciating pain in my head and a feeling as though my life is at risk which makes me sit up for the rest of the night.

I am seeing a Neurologist this week and wonder whether anyone can help me ask the right questions. I believe that my autonomic nervous system may be tested and I know it’s not functioning properly because of the problems I have such as fast heart rate, insomnia, breathing problems, etc.

I haven’t been diagnosed with EDS yet because I am not hypemobile although other family members do have hypermobility. I’ve read Dr Diana’s book but am not sure whether to quote parts to the Neurologist because I don’t want to appear to be telling them how to do their job. At the same time, Dr Diana’s book has made me realise that I have so many of the symptoms she describes. Any ideas how to get an accurate diagnosis and making the Neurologist aware of EDS without them thinking you’ve just been self-diagnosing from the internet?

Best wishes and good luck

B

[Brenda]

Hi again Dr Diana

I tried to order your book on Amazon Uk but they don’t have the updated version yet. Is there much difference in the 2012 version? If so, would I be better off ordering it via your website and paying in dollars or ordering via the UK website?

Thank you and I look forward to hearing about any contacts you have in the UK.

Kind regards

Brenda

[Brenda]

Thanks for reply Dr Diana.

I will purchase your book on Amazon UK so that I can pay in sterling and look forward to reading it.

In the meantime, do you have any ideas about convincing doctors in the UK that I need urgent help with this head/neck instability problem? I feel as though I am at high risk because of brain stem compression and the chiari 0 causing a CSF blockage and excruciating pain but nobody seems to understand my symptoms or can advise me what to do to give me some quality of life. Do you have any contacts here?

Best wishes

Brenda

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