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?
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
@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
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.
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
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.
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
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.
Thank you very much. Will PM you asap
I hope you feel better by now!!! If I should know this from your posts and missed it, I apologize.
If you haven’t had success yet to self-realign your C1, I might have at least one tip I could share by video with you.
I’m doing reasonably well but do still struggle with the upper neck pain. I’d be interested to hear your C1 realignment technique
The C1 restructuring technique will not help in your case. Treat thrombosis of the right transverse sinus with medication.
As for me, you didn’t have significant compression of the IJV, it is there, but it’s small; it’s debatable whether it could have had a significant impact on the volumetric outflow (Honestly, my opinion is that I see on the CT images at the very beginning, at that moment, you not have compression ). And even on the right side your IJV is better than on the left, on the left side it is compressed more strongly. But again, this is not significant compression and it is debatable whether it could affect blood flow. 3D reconstruction may not be accurate, transverse sinuses. I looked at the axial and sagittal sections of the MRI and yes, your right transverse sinus is tightly thrombosed (an error in diagnosis and it is unknown whether it brought any benefit surgery.)
With thrombosis (arteriosclerosis, infections, cholesterol, sugar). That’s why your IJV did not open immediately after surgery. Well, there is good news, she has filled up more, due to the blood thinning pills, perhaps the clot will resolve over time. They’re operating on a blood clot, but it’s still dangerous.
In your situation, the transverse sinus thrombus is to blame. Perhaps, at one time, the dislocation of the atlas was stronger and the IJV on this side was more compressed, and the transverse sinus, due to low blood velocities, turned into a sump, a reservoir for cholesterol plaques, possibly an infection-disease or simply arteriosclerosis.
This is a general idea, not for your case.
Your atlas is not severely dislocated. Do MRI arteriography and venography of the head and neck, rule out the presence of stenosis and arteriosclerosis. As Doctors Peter Nakaji and Michael Lawton wrote and as I think based on hydrodynamics, it is necessary to remove compression from the non-dominant side. Why ? Because the resistance of the weak side (non-dominant side) is greater, and when you release the dominant side, the blood flow will increase, but on the non-dominant side it will decrease (because fluid, like electric current, flows more along the branch where the resistance is less) and in the end you further reduce blood flow on the non-dominant side. As a result, you get headaches in that hemisphere, etc. In general, I think that if there is significant compression on both sides, then you need to operate on both sides after some time. Why ? Because after 1-2 years, the distribution of blood flow will improve and the veins will begin to change their sizes and in the end, on the one hand there will be a small deficiency. Of course, there won’t be any special or strong symptoms, but still. only if you have poor metabolism and are prone to arteriosclerosis, the transverse sinus may gradually, over a couple of years, thrombose due to low speeds. And the risks of a second operation are probably greater than mild residual symptoms. one working IJV is quite enough.headaches can also be due to disc herniations (protrusions) that put pressure on the spinal cord of the cervical region, but this is easy to see on an MRI. But the accompanying numbness of the hands. It is possible, but unlikely, that the body rebuilds the vascular system of the head (some vessels narrow and some expand, distribution of blood flow), bypass paths are not needed, and builds new ones, perhaps this is why the head hurts. Well, there are many more possible reasons, thrombosis, arteriosclerosis, you need to do an examination, multiple sclerosis (by the way, Paolo Zamboni vascular Italian doctor), ischemia, tumor, Chiari and much more.
if this picture was taken after surgery, then yes, there will be an effect from the surgery. But if this picture is before the operation, then you did not have compression at that time.
and even in the next picture, before, strong compression is also not visible
Treat transverse sinus thrombosis with medication. thinning drugs.Proper nutrition, walking, fresh air. What’s in your mouth on the MRI, I assume you have a false tooth, metal, or something else.
this is my Compress IJV almost without Eagle syndrome(basic large transverse process С1 ) in triangle atlas C1 and digastric muscle and Musculus stylohyoideus, TOS and hyoideum bone identify on your own despite doctors’ diagnoses
For C1, halotraction or surgery. You can try Cervical Collar Rigid and sleeping on your stomach as I described. Compress IJV almost without Eagle syndrome(basic large transverse process С1 ) in triangle atlas C1 and digastric muscle and Musculus stylohyoideus, TOS and hyoideum bone identify on your own despite doctors’ diagnoses - #6 by Filatov
I noticed the “before” in the picture. The stylohyoid process was broken, I don’t know, maybe they tried to correct the position of the atlas, chiropractors/physiotherapists and then the stylohyoid process was broken, or there was an injury. Is it broken? because further on the process is thick.therefore, on the CT scan, photo - “before”, the dimensions (diameter) of the IJV in the atlas region are normal.Then everything comes together, before this CT scan you had strong compression on the right, this can even be seen from the position of this broken stylohyoid process. There was strong compression and plaque accumulation, thrombosis gradually increased. So, indeed, my theory based on the fundamentals of hydrodynamics is correct. Now you need to get rid of thrombosis, try medication.
And yes, the surgical operation was useful and effective. The stylohyoid process could have fused at any moment, healed, and put strong pressure on the IJV again. Although the outflow was already small due to thrombosis of the transverse sinus. Now you need to be treated for thrombosis, this is also quite difficult. Once the thrombosis resolves, you will feel great.