Hello everyone, I had my decompression surgery on Aug. 16th, immediately after waking up from the surgery I felt this extreme pain all over my head. I thought it was normal because of the surgery, the procedure etc (I had part of my cyst “drained” too and also one of my cervical bones was also removed)I have EDS too. But the pain has never decreased since then. I feel a lot worse than before the surgery. I know I may need to give it time to “heal” but I need to know if somehow this is normal; has anyone of you experienced the same? if so, how much time did you spend with the pain? the medications just don’t work. As a note, the neurosurgeon mentioned that I was anemic at the time I entered into surgery, and also, he said that I got air into my brain during the surgery, he said this can cause pain, and that this will resolve with time (I was in ICU after the surgery for some time). Thanks for “listening”. If someone know something to help with pain, I will appreciate it! Thanks!
Lourdes,what does your NS say about your pain level? I know “free air” can be very painful. I second the suggestion to go the ER for pain relief. I’m so sorry you are feeling so awful. Hang in there.
Jenn
Thank you Nykki!
Nykki said:
Hi Lourdes,
I haven't had surgery yet. I am so sorry that you are in pain and I hate that i can't give you any advice. Were you fused?
Take care,
Nykki
Thank you very much Beeba, sorry for my late response but I still have all this pain… I went to see the Neurosurgeon and he ordered a new MRI to see if anything wrong is going on. He also sent me to see a cardiologist. Thanks for the info you provided me, it makes sense (zero the stamina, etc). I guess I just didn’t expect to “suffer” more after the surgery, and for so many days. I was “used” to be in pain all the time before the surgery; now I’m in pain all the time, but the pain has increased considerably.
Beeba said:
Lourdes, I am so sorry you are so uncomfortable. I know it can feel like a lifetime but at two weeks are still very early. Any fever,drainage or fluid build up. Or even just pain that you can not tolerate you need to go to ER. At 2 months I think you are well within your rights to request a cine MRI or preferabley and upright flexion/extension MRI. And a rotational ct scan. I have never been denied by my 2 out of 3 neurosurgeons. And let's face it I have a send and third so obviously the first wasn't good all the way around. There are times I was so sick I think he fought it almost out of fear over what they might see. Jerk!! And he just thought it was me. Suggested I go out shopping and lunch. I hadn't left my sofa or eaten In 4 months. So what I am saying is don't wait that long but you may need to give it a bit more time. But the bottom line is if you feel you can't take it then don't and go seek help. But two weeks I was still sleeping around the clock with all 3 surgeries. Obviously I was a bit more used to it by 3 but first surgery really threw me for a loop as it seemed like it wouldn't end. My future surgeries I did know it would. But please don't suffer in silence but don't expect to be superwoman. This surgery and recovery takes it out of you. Even the recovery takes recovery to build back up stamina. A muscle atrophies way faster than you could ever build a muscle. Please just rest. That is most important.
Thank you Jenn… the neurosurgeon say I should not be in so much pain by now… but I am, so he ordered a new MRI to see what is going on. I will have it on Sept 13th… Thanks! 
jcdemar said:
Lourdes,what does your NS say about your pain level? I know "free air" can be very painful. I second the suggestion to go the ER for pain relief. I'm so sorry you are feeling so awful. Hang in there.
Jenn
Sorry Nykki… About your question… What is being fused?
Nykki said:
Hi Lourdes,
I haven't had surgery yet. I am so sorry that you are in pain and I hate that i can't give you any advice. Were you fused?
Take care,
Nykki