Hi yes...in fact I was told I was going in for a cord release and a week or two b4 they changed it to a decompression....my tethered cord showed on a MRI....my cerebral tonsils were not herniated that much,....4mm and 6 mm's....but I also do have a partially retroflexed odontoid so they changed their minds which to tackle first....
I also was told at some point I may need to be fused as I also have CCI....and it seemed bad post op...but has gotten better with time...and the neck exercises...I really feel they helped me a lot....
I was also told at some point I may need my cord released...
Did you have a EDS DX b4 surgery?
Also did they note your brain stem was elongated during review of your MRI's?
BTW- I will be 8 yrs post op May 28th.
They are similar to the isometric ones....but they were specific.....exercises.
Incision healing was not a huge issue for me even with a EDS DX so it is not a true statement for ALL with EDS.....same with scarring or even stretchy skin....my skin is not stretchy at all....
Did they do a special test for your CCI to see just how you may be affected by it?
The neck exercise's I was told to do are in my profile page group of pictures...read the comments under the pic to see which of the exercises I was told to do as not all on this chart are for the surgery we had.
thank you for the exercises.
I did have a flexion extension MRI, I would think that would provide some info on stability. My current NS did not order it, but he reviewed it. My NS did say there wasn't a significant change in measurement of clivo axial angle and grabb oak measurement after surgery. Sometimes people develop more instability after decompression surgery. It seems like I meet or almost meet the requirements for CCI based on measurements but my symptoms don't warrant a fusion at this time.
Yeah the instability post op can worsen due to the bone chipped away from C1 and C2,.....and if you had tethered cord it too could worsen after the decompression surgery...
I am the same do not warrant surgery at this time....but I do give credit to the exercises my Dr had me do since I did see a change in my "bobble head" during recovery.
The ringing in my ears yup...I still get it some times it is more so then at others but I also know there are other reasons to have it then just the obstruction of CSF flow....
The more I did post op the more symptoms will return we do need to slowly get back to certain activities...listen to your body when it is ready to do those things....if symptoms return you are not ready.
Your body may be healed on the outside (incision) but the nerves inside will continue to heal for some time....so you can still over do it....slow down when your body fights back....and accept it is going to take time.
I wound up in the ER after my surgery with pain I never really knew b4....thought I had kidney stones or something.....it was muscle spasms...and they were from over doing it.....at the time I was a few yrs post op too....I continues to improve for yrs post op...but I did not push myself,,,I went very slowly and would encourage anyone else to do the same,....pushing ones self could cause set backs and I have seen it happen to others.....so be patient...or be the tortoise.....slow and steady...that is why it is my avitar!!
Hi lasel! I had this whole thing typed up and thrown my post disappeared! So I'll try this again! Lol! I am 9 months post op, have EDS and CCI. The specialist said he thinks I had CCI before surgery and it was worsened after. He lifted my head up with his hands and tilted it forward a little and honestly I felt a surge of relief. He said that tells him more than any MRI would. He also said I would need to be fused from occipital to c-3. But that it would be disabling really so he wants to give me more time to heal before we make a decision.
I have some ongoing post op issues so it's hard for me to know what's causing what and that's why I'm scheduled for a cine flow next week in Cincinnati. The ringing, fullness and helicopter sounds in my ears and vision issues are constant. The strain, cough and laugh headaches are back and I feel like I'm worse now personally. I have a rocking swaying feeling and almost like a sea sickness and feel like I'm floating sometimes if that makes sense. It's hard to describe and I'm not sure if that's similar to what you're experiencing or not. I wish you much luck and I hope and pray you feel better soon!
Hi Lasel, I am not experienced enough to offer a wise answer as I am only 6 days out of my decompression. But I will tell you what Dr Rosner told me 2 days ago. He said it will be at least one year before the most improvement comes usually, but he also said that many of his patients do not get the maximum benefit until 2 to 3 years later. I was told that nerve only Regenerate at a rate of 1mm a month.
So many are impatient and want to get right back to a "normal" life but it takes time.....I know.....btdt....
For balance I found walking barefoot helps as well as a soft soled shoe....I got the Go Walks and found I could walk on grass where b4 I had issues,,,,,,
When trying to help the neck muscles,,,,valium is great to help loosen it up...but also use heat b4 you stretch with exercises and heat when done...it is very helpful during this process.
Just remember slow and steady wins,,,,,,