@PatientD I did actually start with Iain Smith 3 years ago and had the full AO treatment. Unfortunately it didn’t help. I don’t think my symptoms feel like trapped fluids, especially not since the surgery. It feels like a more mechanical, clicking, muscle tension type of thing.
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Sorry to hijack the thread but would it be alright if I could PM you regarding loss of lordosis etc? When I can summon the energy ofc… 
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Oh sure, or just drop the question in any of the threads above with physio content. Btw I’m not a doctor nor physio therapist etc, so the answers are totally my personal opinion and/or experience
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@M_UK I know Dr Higgins has looked into your venogram but looking back your 3D venogram, it appears that your left transverse sinus has somewhat narrowing in it. I do not know if this is an artifact of the 3D rendering you used or there is actual narrowing but sometimes arachnoid granulation can cause similar narrowing on brain sinuses . I assume since Dr Higgins has looked into the Venogram, it is not an issue. Are your headaches caused by muscle tension along the cervical area? or it is like the pressure type linked to IIH.
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dont be scaring people and implanting ideas with that ‘regrowth’ stuff … smhh
@Nolan - We have members who have had regrowth. When symptoms return a year or more after surgery, regrowth is a possibility though the majority of our members have not had that happen.
Have you had more than one styloidectomy i.e. did you have bilateral ES?
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Hi, so if is muscles etc it may be worth seeing a specialist instability physio if you have not already done so. I saw Anna Higo at Physiocure in Leeds who is very good. She will set you exercises to do. Am hoping to see Ann McCarthy at Wellington in London next month at Anna’s suggestion (as I live in south). D
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@PatientD I’ve consulted with many Physios, some claiming to be specialists, but not the ones you name. I’d be interested to know any specific exercises you find most helpful in your situation
I agree most physios are not helpful & set exercises that are dangerous for CCI/VES patients. Anna and Anne help many EDS/very unwell patients. They are doing advanced research studies on CCI topics. I have told Anna some VES info since seeing her.
I have had 5 operations this year (about to have 6th this week) and my left styloid is loose & so doing anything much to move/strengthen my neck is dangerous. Am hoping next year to start rehab more fully.
So start for me was mostly isometric work to strengthen neck muscles without head movements, loading cervical spine (light books & increasing-tea towel tied to stabilise book), using Aspen collar for one hour at end of day to apply traction to cervical spine. anna fitted my collar for me. I can’t provide meaningful feedback yet as been in crisis/ post op healing phase. But I plan to start these once post op swelling from next op reduces as won’t have worry of loose styloid then. They know more than anyone else have seen.
Hope you find help. D
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Your journey has been rugged but you’ve done so much good for yourself by being proactive in finding the best & most knowledgeable providers. You are an inspiration to me. I hope & pray your surgery this week is truly the end of the line as far as surgeries go for you & full healing can begin once that is past. 
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Thanks a lot. You and Jules do a great job in helping run this site for the benefit of all members. Am sure I can speak for others here in sincerely thanking you both for all that you do. It’s a powerful thing to find a support group like this when times get really tough. D 
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Definitely wishing you nothing but the best! I truly hope this is the last of it for you and you can just focus on the rehabbing. 
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Thank you quick question were all of You given a fluids bag the first night after your operation ? I ask as I have trapped fluid problems & I suspect lengthy fluid drip made my swelling worse. Wanted to check before discuss with Mr hughes. D
No, no fluids I don’t think…good idea to discuss this with Mr Hughes…does seem abit strange when swelling with this surgery is an issue! I’ll be thinking of you & praying for you…
@M_UK can you see if there is a chiropractor near you who does Atlas Orthogonal adjustments? This is a no force adjustment that aligns C1 into its normal position. They will need to take X-rays. This adjustment will also align the rest of your cervical vertebrae.
@Danielle1 I did actually start with AO with Iain Smith 3 years ago and had the full AO treatment. Unfortunately it didn’t help
I actually was given multiple bags of fluid post op. Not sure why, as I was drinking quite quickly after surgery. I was kept overnight and was given fluids up until about 2 hours prior to discharge.
Thanks for responses. I have asked not to given fluid bag post op for long/at all. D
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Sometimes post op fluid is necessary to help elevate blood pressure. I had surgery earlier this year & for some reason my bp dropped dangerously low post op. I was on IV fluid for 2 days. I needed to be up & walking but couldn’t even sit up straight w/o nearly passing out. That has never happened to me before, & I’ve had several surgeries.
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Thank you very much. Will PM you asap 
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