10 years post op craniectomy, lamenectomy & decompression

Even after 10 years I still have daily headaches and neck and back pain. I recently had a cervical mri that now shows bulging discs. I was sent to a NS and he recommended PT. I was just wondering if there's anyone who still has the same issues as myself and are somewhat frustrated?

Wow! Thanks, really needed to hear that! Yes,please let me know the exercises. I have been trying my best to be more aware of my posture and invested in a cervical pillow and lumbar supports for my car and at work and this alone has made a difference. I guess its human nature to reach out and know I'm not alone. Thank you again!

Hi Alicia..

I am 4.5 yrs post op and had to have a neck fusion before decompression and another 2 yrs ago...My Ns was honest and said he was unsure as to why my cervical disks were going. The fusion was not bad as far as recovery goes.

Great, thanx! I thought it was just me that blames my back pain, etc on the chiari! Although I had surgery I know it is something I will always have to endure. So blessed to be able to talk with people who know what I'm going through.

Beeba said:

Running to lunch - but will write out exercises when I get home. Ask your friends if their back ever hurts -you will be surprised that most will say yes. But they haven't had this surgery so they just accept it easier - we can blame everything on this. Lol

Thank you for your help! I will certainly give it a try...I'm one of those I'll try anything once kind of gals!

Beeba said:

No I break a nail and I think chiari!! Lol.

I hope I can explain things without actually showing so if I end up to descriptive I am just trying to be clear. The two that I have now are the ones for low to middle back and neck.

For neck - did you know there is a muscle that runs in the front? I really didn't. I sure knew all the others junk in there but the muscle that runs in the front is what supports your neck and helps with the bobble head feeling. So if that is weak you tense the back to support it cause sore neck.
Lay on your back. Knees bent so back is neutral. Head on a flat pillow again neutral. Tuck chin slightly and just lift head off pillow 1/4 inch and hold. Do you feel the struggle? That means it is weak. Do ten times and hold for a few seconds. You can put your hand there to feel the muscle. Work up to a few times a day and try to increase the hold. If it gets easier it is working.

For back - lay on back head on pillow. Bend knees. Put fingers on hip bone and go just in towards belly button off it. Do slightly inward pelvic tilt(should be very slight) and do like a keagel(sp?) you big muscles should not be straining. This is working a core muscle not the ones effected by ab exercises.

Pilates are fantastic for building core strength. All exercises are designed to work the supportive muscles. Can rent videos on demand. Never do any that include neck extension and personally I don't like head down position.

In general your muscles may have knots that really need loosening that all the stretching in the world won't do. Try the exercises but I definitely encourage pt with someone you feel is really knowledgable. I prefer sports med rehab places.

Just as a personal warning from a bad experience - I make it extremely clear I don't like anyone touching my spine going into my head. Gave me an instant 2 day headache. All the muscles around it good on bone not so fun. The exercises starting should really be no more than very light band work or like 2-5 lb weights. If they give you more - pass. And as one of our members found - please don't have them make you do push ups. Everything should be core work and if in doubt ask them what muscle that works. A good place will have human anatomy models to show you.

I know we have a wonderful pt on this forum chiaript - I hope he will jump in with other advice or correct me if I have mislead you in any way. May even shoot him a message to have him double check my info for accuracy. I do want to make clear - I have no education in this but I have experienced surgery without pt and with and I feel your recovery can be so much better and easier with it. Just watch out for the over zealous gonna get you in a marathon type. Be clear about goals - which I have to assume is being pain free - then you set new goals. Mine right now is to play golf again - seems a bit trivial - I absolutely stink at it, it is cardio for me because I spend more time trying to find my ball than actually planning the next shot but for some reason I started only a few years ago and I really love it and miss it. Kids are getting older and it helps my marriage to have this common interest. So the sun certainly doesn't rise and set on golf but I sure would like this part of my life back - I can live without roller coasters!! Good luck

And one PS - try arnica cream. I couldn't have been a bigger doubter - but it really helps my neck hugely!! Can be bought at most pharmacies but you may have to ask. It is homeopathic and isn't instant relief but after a few times of applying you will notice it does hurt as much. Yay!!!

Thank you for your help, I truly appreciate it. Good luck to you on your upcoming surgery, please let us know of your progress.

ChiariPT said:

I was wondering if I had to correct the he/she part!

I would always suggest that if you are having a change in your pain pattern you do see a physical therapist and have a complete assessment. Many patients with disc pathology (actually a very high percentage) respond to conservative therapy including exercises, and the use of modalities to assist with the pain. I have to say that I am rather new to Chiari as I was only diagnosed in January and already have a surgery date. Each of us may be quite different depending upon extent of syrinx, limitations in activity that occur over time, and normal changes as we age. Beeba is correct that much of what we need does include stabilization of the spine through core strengthening. Only through a complete evaluation can an exercise program be designed for you. Depending upon the state in which you live, it is likely you would need a referral from your primary care physician. You might find that your PT does a more complete assessment and history than your neurologist!

Interestingly....there have been a lot of discussion in regards to chiropractic manipulation. I would not allow anyone to do any kind of manipulation on my spine. Those that I have spoken with have no idea about the risk of Chiari malformations.