I was diagnosed in early Oct, I had decompression surgery on Oct 24.
The Surgeon is a good one here in New Orleans, and said all went well. He said before surgery that I should only be off work about 4 weeks (Its been about 6 weeks at this point) Along with being a Pastor, I am a Meat Dept. manager/meat-cutter. I'm not ready to put a knife in my hand for an 8 hr day!!!!
My question really is about how do I define success? Im still having headaches - the last 2 days were about "7"'s on the 1- 10 scale.
Im taking "BUTYALBITAL/APAP/CAFFEINE TABS" ( EVERY 6 HOURS) the last 2 days I've been taking a pill and a half each time and the HA's have still been bad!
Im also taking either 5 or 10 mg of valium (depending on need) for the neck muscle relief- which is getting better!!
MY HA's are very much "cranial pressure" feeling - if i happen to cough its like a piercing pain in temple area.
My last meeting with surgeon (about 2 weeks ago)he took a CAT Scan and he said he thought i was dehydrated so i amped up the water/gatorade etc and there is no way i can still be dehydrated!!
I have made some improvements since he took me off TOPAMAX- My walking is better (a little straighter!) I'm eating well (my appetite has been too good lately!) my But I still feel "out of it" I am having trouble thinking straight, remembering things that i should easily remember.
I'm meeting with surgeon this wed for a follow up MRI (first one since surgery)
IS there something I'm missing? Is there something I should ask/tell my surgeon?
I am sorry to hear that you having these issues...from my own experience it took many mths to feel real relief....you are taking Fioranol (generic) from your h/a you wrote...I too, take that ....but the one thing we have to watch out for with that med is the classic 're-bound' h/a'.
I am happy to read that your walking is better.
please let us know how you make out with the MRI and talking with the NS.
Oh, 1 more thing...my NS explained it to be this way...the CSF in my head was not running the way it should have b/c of the chiari obstruction....thus , in his opinion it was going to take many mths for my brain to re-calibrate itself to the new flow..makes sense...and fianally, i began to feel more myself after about 4-5 mth...good days and bad during that time.
Wow Lori good to know, my NS's PA said that it would take time for the flow to be normal since Marly has been with this since birth. Hope to hear soon from the Dr. that she can have the surgery Thur. the 8th. She needs some relief. Kenny take it slow, when they cut neck muscles or any muscle for that matter it takes anywhere from 6=8 weeks to heal. You use your neck muscles for a lot of things so if you have FMLA you should accept the time and use it.
Lori is right tho' it does take awhile for the brain to re-adjust to its "new" workings...lol... Slow down- walking is good, BUT DO NOT over do it---remember healing takes time!! each person is different....
If you think healing is not going right for you DO NOT hesitate to ask your NS about it! the caffeine tabs might be contributing to your headaches, so might the gatorade I know to much of that it gives me HA's-.so that too might be a contributing factor.
My question is when you have the headaches, when you have them what makes them feel better?
I mean if you lay down flat do they feel better or worse? the reason I ask is because if you have CSF build up and when you are laying down flat and some of the pain is relieved this may be the cause, and the pressure could be low....and then it is reverse if its not relieved pressure could be high- you see what i am saying ( sorry if i am a little confusing)
Oh yeah one other thing i wanted to mention i know some people develop what is called Intercranial Hypertension (aka psuedotumor ceberi) which seems to have similar symptoms. and it is my understanding is treatable.
Laying down doesn't seem to give much if any relief, but I can tell you if I stand up from laying down or sitting its like a needle shooting through my temples!
I emails my Doc today and he said I could try going back to Percocet for pain, we'll see how that works. I do see him on Wed for MRI/follow up maybe i'll get an answer!
Your follow up MRI will show if the fluid is pooling or not flowing correctly. Make sure you mention all of your symptoms to your NS. 6 wks is not really much time to recovery from this type of surgery. I started to feel like myself more after about 6 months, but ended up needing a shunt to help the CSF so I was back in for another surgery. I would say it was a good year before I felt like I had any stamina and I'm with you, I would NOT have felt like I could put a knife in my hand for 8 hrs! Try not to rush yourself and take your time with your recovery. I think what you are experiencing now is your body trying to get better and it is perfectly normal after this major surgery. Take care.