Avatar universal

6 month post op surprise

I had my 6 month MRI and post op appointment and found out I do have mild to moderate craniocervical instability and most likely occult tethered cord, neither bad enough for surgery at the moment.  I can't help but wonder if I was fused and possibly detethered as well if my symptoms would be even better.  I have problems with any kind of stretching activity, like if I need to kneel on the floor for a long time while cleaning, I'll start to feel a slight rocking, like a ripple effect through my body, it's not as bad as vertigo.  It's very hard to describe.  Or if I stretch my legs, especially a butterfly stretch, I'll feel a slight rocking and a springy sensation as I get up.  That is why my doctor suspects a tight filum, plus the tailbone pain I've had for 10 years.  My symptoms are definitely much better than before my decompression but I'm not perfect.  I guess most people are never perfect again.

I guess I feel like a ticking time bomb right now.  I didn't think I had any signs of instability so I figured the remaining symptoms I have at 6 months just hadn't resolved yet and I had hope of them getting better.  Now I feel like that's not going to happen and instead I will just slowly deteriorate until I do need more surgeries.  

Anyone else have these issues and not have surgery for them?  Did you still feel improvement from decompression surgery even after a long time has passed.  I am an active person and was hoping to get back into participating in certain activities but I think it's impossible now.  It kinda stinks being just good enough to not require a surgery but not well enough to enjoy the life you want to lead.  I realize a fusion is a risky procedure and things could get worse and I realize that is where the NS experience comes into play and knowing when surgery is a good idea.

For those of you who know what a clivo axial angle and grab oaks measurement is, mine are 136 degrees and 8 mm.  I guess I am in the questionable zone for CCI.
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620923 tn?1452915648

  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.
Hello.  I have not been diagnosed with EDS, and I was told my incision healed very well which doesn't always happen with someone with EDS.  My doctor did not say my brainstem was elongated.  Sometimes I think the doctors only say what's necessary so they don't really freak you out.  For instance, he didn't mention the CCI before my PFD surgery because he knew it wasn't bad enough to do the fusion and I may have wanted him to do it.

I was never given neck exercises.  I was only told to move my neck from side to side and up and down frequently after surgery.  Are the neck exercises you are referring to the ones where you apply pressure with your hand against your head and try not to move your head.  I guess they are called isometric exercises?
620923 tn?1452915648

  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.

Avatar universal
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.
620923 tn?1452915648

  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.
selmaS, do you find that you still have ringing in your ears and  a feeling of fullness in your head especially when lying down sleeping, like when you get up in the morning?  Also, did you still have feelings of disequilibrium after your pfd.  Before my surgery it was like a was walking on a seesaw attached to both feet, the floor felt like it was moving up and down.  Of course that symptom fluctuated with activity and weather and such.  Now after surgery, that is much much better, but I've noticed since increasing my activity level I feel it slightly and it's scaring me.  Before my 6 month post op MRI and appointment I really didn't do much, just laundry and light cleaning and getting the kids to school and activities. These things I couldn't do before surgery and I told my NS I am functioning now whereas I was dysfunctional before surgery.  Now, since I know I healed OK I have been doing more heavy cleaning and such and I've been feeling more "bouncy" so to speak and it is annoying me.  If more surgery would help these symptoms go away I'd rather have it done now and get it all over with rather than have it done in 10 years and wish I did it sooner.  I didn't say this to my NS because I know that isn't a very sane thing to say.  I figured monitoring my symptoms for the next year and following up with him at my yearly appointment would be more logical.

I guess I'm just wondering if you still felt the "bouncy" feeling after PFD surgery and if it continued to improve even if you pushed yourself and continued to do a little more as time went by.
620923 tn?1452915648

  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!!
I just lost my reply to you so here I am typing again.  So frustrating.  And I don't like how the format here changes from day to day.

I do think I overdid it over the past few days.  I tried jogging a little bit just to see if I could do it and I also was on my hands and knees cleaning my kids room.  Then a day later I decide to work out with lunges, squats, some crunches, and arm and leg exercises. No wonder I feel bad!  The leg tingling and twitching and imbalance feelings got worse after all that.  Lesson learned!  I need to take it easy.

My body feels so weak and shaky I feel like I need to try and strengthen it, which may also help with balance, but I guess I need to take it slower.

I'm just so impatient!

Thanks for the advice.
Avatar universal
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!
That's happened to me before, I loose everything I wrote and it's so frustrating!  I'm glad you found a specialist who knows how to treat you if you do end up needing the fusion.  It's reassuring to know you at least have a doctor that is competent at treating chiari and all its related problems.  I know exactly what you mean by those symptoms.  I had every one of them before surgery.  If I do too much (which if you read my reply to selmaS you'd know I did way too much) I get the rocking and bouncy while walking feeling.  I used to "float" all the time before surgery and sometimes still feel that way after a lot of movement.  I think looking down is still bad for me, which makes me wonder about CCI.  I know it's no where near the point where I would need surgery for it, but I can't help but wonder if I would feel "normal" if I had it.
It just happened!!!!  I just lost what I wrote to selmaS.  AHHH.  Anyway, just wanted to wish you luck with your cine flow study.  I hope it helps provide some information on what's going on.
Avatar universal
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.
Thanks.  I've heard that too and read stories from people that said recovery was a long process and they eventually felt "normal."  One thing is for sure, there are definite ups and downs during recovery even when you are doing fairly well.  It's emotionally taxing.  Everyone wants to feel exactly the way they felt before they got sick but I guess we need to appreciate just how much better we feel after surgery compared to before.
Good luck with your recovery.  You had posted something regarding how long it took for your neck for feel less stiff.  I stopped taking pain meds pretty quickly and my neck was quite stiff and I probably wasn't moving it as much as I should.  Well, I took the pain meds again and it felt much better that I was able to move and stretch it properly.  If pain meds make you feel sick, I was also given valium 5 mg which helped relieve the stiffness.  It wasn't until 3 1/2 to 4 months post op that my neck muscles felt somewhat normal again.  I didn't take the pain meds that long but if my neck felt really stiff just taking one everyone now and then seemed to "reset" the pain level so to speak.
620923 tn?1452915648

  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,,,,,,
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