Post-op Headaches

[Btgrabow]

This is my first post in a forum or support group.This forum pops up recurrently if I am searching for something Chiari related so thank you for being here. I am 21 days post-op. The occipital, frontal, temple area headaches are intractable for about an hour if not 2 hours usually when awaking from a night of sleep or a nap. I do an 8 part regimen to help the headaches when I awaken between cold compresses, oils, muscle rub creams, meds etc which makes the headache tolerable in order to function again for maybe 3 hours or so. I have faith in my neurosurgeon but he keeps saying all of this is post op related and meningeal irritation related which makes sense. I presented a bit differently pre-op than some. Right face, arm, leg numbness, tingling, muscle weakness, more of a numbness/tingling to neck/occipital area that went mostly to right face with deep behind eye/ear pressure throbbing/pain. Not ENT related. Very poor endurance. Started in Nov '15. 3 little ones. Made choice to go from full time work to 2 days a week with 3rd child but then when all of this started I could only work 1 day a week and after that I was down for 1 or 2 days just after 1 dat of work- overy past 6 months. My kids were rarely with me during day alone- either at Aunt's who does home daycare or at school. I am a self employed geriatric nurse practitioner working out of a wonderful long-term care home/rehab. Being close to the medical field has caused much frustation in this process because as everyone knows- you could adk 20 hralthcare providers about this problem and they will all give you a different answer. Kids 7, 5, 22 months. If I had a crystal ball and knew this was post op related and all I need is time, home PT, and continued meds for a while then that would be fine but I am curious how others progressed with post op headaches who didn't have this same type of "spinal" headache before surgery. Thank you

[Btgrabow]

Thank you all for the responses and encouragement. I have come up with the response to loving family and friends who ask the question, "When did they tell you that things will get better?" Which is a good appropriate question but I relay to them that there is no answer to that besides every single person is different. Some may be weeks, months, or years. And "improvement" measures are different for everyone. And yes....my body guides every movement I make- whether it is ok to keep going or stop now- whether it be a little laugh or "quick" move or whatever that makes the back of my head/brain feel like it is going to blow. So I am really trying to listen to my body and really have no choice. It's just that no matter how much I know that no one has the exact same experience- the more positives I hear the better. I have read so much medical sourced info and certain experiential info such as this helpful forum and I know everyone has common similarities  yet are so different but it is so wonderful to hear hopeful positive stories to relate to so thank you. I went into this deciding on surgery knowing this was not a fix but am hopeful it will make symptoms more manageable and allow me to be maybe 50% of myself. I say I have been at 25% over past several months. I do what I tell my patients- look at progress week by week and it is much easier to see progress even though slow. Thanks again for advice and listening.

[selmaS]

  Hi  Btgrabow and welcome to the Chiari forum.

The one thing we ALL have to remember is we are all different and will heal differently and there is NO way any Dr can put a time line for when we will be able to go back to work or do daily activities....we MUST listen to our bodies. What related and non related conditions you may have will also play a role in your recovery

As for post op headaches and issues....yes, we will have symptoms come and go as Blueghost mentioned....to me it was like a roller coaster.

I can still get headaches...then tend to come with major weather changes or if I over do it.....I am going on 8 yrs post op in May....I take my time with the things I choose to do, and avoid things I know will cause me issues afterward.And I must say I can do so much more then I could b4 I had surgery.....everyone will have a different journey....but take it slow and steady.

[Initwithyou]

Blueghost has a very good analogy and is very true.

After my decompression, I likened my symptoms a lot like a stroke.  My whole right side was affected.  It took months but by 12 months most of that feeling was nearly gone.  I continued to have residual symptoms but they were tolerable.  The headaches slowly abate.  Don't over do it.

I work in the medical field as well so know healthcare professionals push themselves too much.  Remember you are human and science doesn't always remember that.  You have to listen to your body not always what surgeons feel you should be doing as sometimes their timelines are a little off.  You need lots of rest, slowly increase your activity with frequent light activity, and frequent rest periods; your body tells you what you can do. By 10 weeks I returned to work parttime and full time by 12 weeks but was thoroughly exhausted at the end of the day. (my surgeon thought I should be able to return to heavy lifting at 6 weeks and be begging to go to work as I would be feeling so good because she "fixed" me.  So NOT the case). Each month got better.   Best wishes for a good recovery.

[Blueghost]

I am 6 days post op but I was told that it will take several months to a year to get the maximum benefits because the nerves will become supersensitive once pressure taken off.  The analogy I was given was the symptoms will go up and down like the stock market  during recovery. meaning they will get better and come back and get better again and so on until they finially level out.

[Btgrabow]

Sorry about typos but I was on a roll and 1 proof is all I have tolerance for right now :)