Managing pain a over a year post op

[Krystinamarie]

It's been a while since I've posted in this community but I was hoping to get some advice/information on how others have managed post op pain or if others experience the type of pain I have.

I had decompression surgery in May of 2014, a C1 laminectomy and tonsil resection. I had a rough recovery dealing with chronic meningitis and inproper wound healing. In addition to most of the symptoms before surgery I am having severe pain in my neck and base of my skull. Sometimes it's a dull ache and other times it's sharp and completely debilitating: I'm in constant pain and it's pretty overwhelming. Activity definitely worsens it but even if I'm taking things slow the pain is still there.

I've tried physical therapy with no luck. My primary doctor recently prescribed Lyrica but I have yet to have any relief. Im really upset/concerned that this is just the consequence of having surgery and I'm just ending up with even more
Problems in the long run.

Has anyone experienced this and found Lyrica has helped? Or any advice on how to alleviate this pain? What to people do who have had unsuccessful surgery?

Sorry for all the questions but thank you in advance!

[selmaS]

  Well CCI could be the reason you are in such misery....and it is an indication you might also have EDS.

CCI can also feel worse when in a car....we are like bobble heads....and it will cause nausea, headaches.....etc Did they do a flexion and extension xray to determine CCI?

Try using a large bed pillow that is very fluffy....and sit in front passenger seat and tilt it back so when using the pillow you are still upright.....the pillow will help keep your head from bobbling all over and minimize the symptoms.

Were you given neck exercises to do post op? If not let me know and I will give you a link to ones I did .....I can now travel in a car with out my pillow and no longer have the symptoms I had....and have not had the fusion they said I would need.....so far so good.

I am not  saying I no longer get any symptoms....but I can manage to do more then I ever could b4.

Crowding could mean a few things....and a retroflexed odontoid is one....do get that MRI and find out if there are other issues left unresolved.....as they may be your issue and the Chiari be ok......

I had a NS tell me not to let anyone touch me....I guess if that were the case I would be worse off now then I am....since I am so much better then b4 surgery......the thing is to have the right NS and know they can not "fix" us....they can only slow progression and restore CSF flow.

[Krystinamarie]

I'm not completely sure about related conditions. Honestly I was at such a low point and in so much pain when the surgeon said he could fix it, I jumped at the opportunity. I've since seen three surgeons along the east coast all familiar with Chiari and related conditions. After seeing the 8 month post op MRI One said not to let another surgeon touch me, the second said CC instability was my problem, and the third ordered more MRI's Because he suspects crowding is the issue.

I'm a little discouraged because I'm still bedridden most days. And the days I can make it out of the house are just painful.

[selmaS]

  Hi and welcome back.

Sorry you continue to experience pain....

May I ask, were ALL related conditions ruled out?

You may have an underlying condition causing similar symptoms and pain.

I was put on a med Savvella...which is similar to lyrica and I was not on it long....as it did not help me....time has....with each yr that passed post op I saw more benefits....

Did you have a post op MRI?