Hi Blueghost, I am so sorry you are having a rough time....I did not have a similar issue post op so can not speak to it with a personal knowledge .....
I hope it was a migraine and you will not have one again for a long time.
Thanks Selma, just that headache was rough. Otherwise recovery is going great. I was very afraid it was meningitis. Luckily there was no fever, stiff neck of any other symptoms. The ER doc and my Chiari specialist NS said it wasn't. The only other problem is I'm dealing with bad post op depression, both my mom and sister get it after surgery. Would you happen to know when the most danger of meningitis is? Is it the first week or two after surgery or is the danger present for months?
I certainly understand , I had a spinal headache after having my daughter....a student nurse pulled me to a sitting position b4 I was to move and I developed a CSF leak.
Depression is very common with this surgery.....as we tend to have expectations and when we can not run around like we are brand new, we feel so let down...but it does get better, AND it takes time...for some a long time to see all the benefits, but there are many and with time and patience we all will experience them.
I am not sure if there is a definite time line....but there are things that can put one at a higher risk of developing it....all of which our NS's work very hard to avoid...... I know it is possible to have a CSF leak a few months post op...and a leak is one issue that can cause meningitis to develop....
What are the symptoms of a leak? The incision is nearly totally healed.
Leaks can form under the skin and collect in an area that gets puffy called a pseudomeningocele.
Leaks will also cause a postural change in headaches....better when flat to being upright.
Sometimes you may have actual liquid that is dripping.....
CSF can leak in large amounts which would cause the most noticeable of symptoms...while a leak can be so slow that it is not noticed, as it can absorb back into the body..
Hi blueghost! I just wanted to say that I suffered horrible migraines after my decompression. I had my first one 12 days after surgery and then 2 days later again. They were happening about 2 times a week for a number of months but have finally calmed down. Thankfully. I'm 10 months post op now. I had a small leak following surgery but as far as I was aware it sealed on its own without intervention. Although I struggle now with fluid from my nose and ear.
I pray it's not a leak or meningitis and that your pain subsides soon
sterile / chemical meningitis (just inflammation) is pretty common after this surgery and treated with steroids. I think the only way to diagnose it is an LP to check for inflammation ... are you on steroids?
You are still so early in your recovery ... my advice would be to remember that this is a marathon! not a sprint. It's really important to not overdo it even if you DO feel good (especially a heightened "good" that steroids can provide) ... most of us have dealt with so many symptoms for so long, and even if our surgeons tell us that this might not make everything 100% ... I think we all expect it, or at the very least, hope for it. I remember the RELIEF of being diagnosed. Of FINALLY having an answer, and a solution. Don't beat yourself up for not being perfect 3 weeks after brain surgery. This recovery is a slower process than any doctor will tell you. Take it easy, rest, stay hydrated! and bug your doctors until you are comfortable.
Luckily the migraine has been gone for several days. I still have a low grade residual headache that Iv had since surgery. Iv been able to reduce the amount of pain meds from 2400mg if ibuprofen a day to just one or two 250mh tylonal pills a day. Iv been walking a lot. I'm still very fatigued all the time, don't know if it's from the anastesia (NS said it would take 6 weeks for the post op fatigue to get better) or simply because Iv been deconditioned because of non-activity before surgery.