Chiari Online Support Group

Pain Post-Op?

Hi everyone! I had my second decompression surgery (this time with a duraplasty) April 22nd, 2019. I am 3 weeks post-op, and still experiencing the short headaches from exertion (aka if I move from sitting to standing or if I squat or bend down and if I laugh I get excruciating headaches in my temples that last for a few minutes; I had this symptom before surgery too), plus I’ve felt a ton of pressure in my head the past three days (today has been better; I’m wondering if it’s due to weather at all). What was your post-op pain like and how often did you experience it/how long did it last? Also, wondering what alternative treatments you found helpful? (i.e. Medicinal marijuana, CBD oil, ice, heat, acupuncture, PT, etc.)

Hey Purplesparklewriter,
3weeks is still early days, VERY early days in your recovery. Initially after surgery I too went looking for answers, but without much luck. The closest I came to some sort of answer was from an ophthalmologist, who bluntly said “…You’ve just had brain surgery, what do you expect?..” Well, to be honest I didn’t expect ‘THIS’.

I have had the ‘joy’ (NOT!!!) of enduring multiple (6 so far) neurosurgeries, none of which have been what you’d call nice. My last was in 2013, and still today I have all of those symptoms you mention, daily. Some days they are minimal, other days they a chronic severe. I can never tell. Some days I can stand from sitting and move unaffected, some days I can stand from sitting get dizzy, a pounding head and wake up on the floor. I try to manage my activity, but this has been very difficult. Today I can feel OK, so I may do a bit more. But then come tomorrow that ‘Bit more’ was a bit too much and I pay for it in agony. I think the best analogy here is a thing called “Spoon Theory”, spoons are equivalent to activity/energy. If I have 6 spoons worth of energy each day, I have to decide how to use them. If I use all 6 doing one activity in the morning, I have no energy for the rest of the day. If I continue with more activity I end up using tomorrow’s spoons as well and this usually equates to me being bedbound with a man in my head with a jolly big sledgehammer trying to smash his way out of my skull. This journey is all about management. Activity management, pain management, energy management, sleep management etc. S.L.O.W.L.Y. I have become a little better at managing, but I HATE it and there are times when I do push a bit harder than I should, but I have learnt I have to listen to my body. It will tell me, I just have to listen. It tells me ‘Laydown or I’ll put you down’ and it puts me down HARD. I now know the consequences of not listening.

As for your alternative treatments, I’ve tried all of those you list (and many more), some days yes they help and on others, not so much. I have been unable to find my ‘key’ as both the headaches and other symptoms vary SO much. If I had a set ‘normal’ I could manage around things much easier. I have many ‘tools’ in my pain management toolbox and for me it’s a case of mix’n’match depending on the day and the pain. And yes, weather can have a huge impact. Some medicos are less than willing to accept the impact weather can have or that it has any involvement, but I can assure you it certainly does.
This is often all something many others simply have no idea, no clue about. We know this because we live it too.

Merl from the Moderator Support Team

I’m about 7 months post op and I can tell you, it is the most excruciating pain I’ve ever experienced in my entire life. I had my 2 week checkup and I talked to the doctor about the pain and she said that they don’t tell people but it is the most painful surgery that Neurosurgery does. So just give yourself time to heal. I’m still having headaches and the horrible neck pain, even though I went through all of that. I’ve tried all types of alternative medicine: massage, acupuncture, acupressure, essential oil, cupping, tens units, chiropractic care and all types of medicine and over the counter pain relief. The only thing that has helped me is cupping. I am a massage therapist and use it in my practice but have a set at home that I use when I am in a lot of pain. I’m so sorry you went through all of that pain, I really hope that this surgery works for you and you will be done with the headaches. They are horrible and I do not wish them upon my worst enemy. Look into cupping therapy. I also have fibromyalgia and regular massage even light touch is too painful for me but with cupping, the pressure from Chiari is relieved after the cups are released. I hope you find some relief.

Do you have Retroflexed odontoid or any craniotomy Cervical instability? What does your mri look like?

I used brain modifying rehabilitation like graded motor imagery and midline exercises. I included neurodynamic exercises and also cervical and shoulder motor control exercises to regulate movement surrounding nervous tissue on the area.

Also muscle trigger release and myofacial work - I did it myself. Specific to the scar tissue, I had to do a considerable amount of scar management techniques once the incision had healed as it was tender to the tough and easily irritated by clothing or accessories of any sort, and pillows.

Be sure to contact your surgeon. I experienced the same type issues and ended up back in the hospital with altered mental status. I think the pain on top of the stress broke me down. I took caffeine tablets after surgery. My neurosurgeon has it as apart of the after care package. Once readmitted I was put on the surgery steroid that somehow eased me down. I hope you feel better soon.

Hi there I’m 32 and went through almost identical. Had op as emergency in 2013 as the syrongimyelia I have was causing paralysis. Like u this happened suddenly have always been a bit “clumsy” not good at sports. But computers was my thing.

The pain after was painful! The nerves have been cut into so u may have electric shocks /brain freeze . I used strong painkillers codeine tablets. They make u constipated so if ur thinking about going down that root make sure u take laxatives. Not nice I know but the last thing u want to do is strain xxx

Any further advice. I’m here xxx