I really hate to do this, but my head still hurts! There, I said it. I never thought I would be the one saying something like that. Especially after 3 years post craniatomy for a huge aneurysm that burst. I sometimes wonder if I really am feeling this or its in my head. Literally.
Lets back up. I woke up this morning laying on the side that I had surgery. I cant do that ever since the surgery. It just plain hurts. I think its all the hardware that was used to put my head back together. Of course it does not help that I had a regular doctor who told me that there should not be any more pain from the surgery as that has been healed for some time already. I no longer see him. Does anyone else have pain from time to time related to their surgery??? Just wondering. Thank you for taking the time to read this and "listen". It helps to tell someone else other than my Mom whom I live with. Have a nice weekend! :-)
Firstly I'd like to say that you are not the only one who has been told that there should be no more pain as everything has healed. I am 3 yrs post craniotomy and shunt insertion. Personally I have been told that my continuing pain is related to addiction to the pain meds, It's my own fault because I pushed myself too hard post surgery, it's phantom pain and (of course) It's all in my head. Now, I've had a bit of experience with addiction and I know I can become addicted. So I regulate myself. This pain is not my body screaming out for medication to feed an addiction. As for pushing myself, my limits have changed since surgery. I have had to reduce what I can do. Sure I've had to test those limits to know when enough is enough, but the idea that I continually push myself to these limits is madness. I HATE the pain, why would I want to encourage it by pushing myself too hard???
With the theory that its a phantom pain and it's all in my head, I believe these are answers they like to give when they have no answer. They are very reluctant to admit that they don't know, so they put it back on the patient. This is very frustrating for the patient and their families who have to manage. You may see a dr once a month or so, but we have to manage this daily. It is not easy.
Just know that although the dr's say 'all is fine' you are not the only one being told something similar despite the fact that the symptoms are far, far from 'fine'.
P.S. I do not consider your post a rant at all. You have concerns, that's not ranting imo
Merl, thank you for the reply. It has helped to hear your story and know that I’m not alone. It’s just frustrating sometimes. Drs sometimes don’t help either. Today is a better day so far. :-). Thank you again!
Ohh if there is one common theme I have heard and personally am well acquainted with it's FRUSTRATION thru all of this. Frustration with dr's, frustration with self, frustration with limits, frustration with symptoms. Just straight out bloody frustration. Ahhhhhhhhh. Some people say its all about acceptance, we can't change where we are at. This was not a choice, so we must learn to accept. I ask HOW???? Some days (like yours) the acknowledgement of my situation (not 'acceptance' but acknowledgement) is a bit easier than others, then I have 'a day from hell' with awful, terrible bad headaches, limited to a bed in a dark, silent room when even to acknowledge the world is a struggle let alone acknowledge my own situation.
As for the dr's, don't be getting me started on dr's because I'll start to rant lol. They like to make out they have ALL the answers. Let's face it they don't. Now, I manage all of this the best way I can for me. I have followed their advice and treatments, none of which have 'fixed' anything. So now its up to me to manage for me.
Just know that you most definitely are not alone. There are a few of us who have been there, its better we support each other because we have been there , we have hands on experience, unfortunately.
Bigmoose, I agree with Merl, not ranting, just needing affirmation, that headaches continue. I too had one doctor tell me I shouldn’t have headaches, so I didn’t go back. But he and others did teach me about secondary headaches and those do occur with some meds. What worked for me was an SPG block. It’s being used for migraines, also magnesium oxide. Did it take them all away? Nope. But it made life more than bearable. I choose the least evasive newer type that goes up your nose and not in your skull. Now when I start feeling a headache coming on, I stop. I don’t keep pushing myself to build my endurance a little more. Also the mag oxide is monitored by my neurologist. I also found intake of protein and water keeps my headaches at bay.
Please google Complex Regional Pain Syndrome. It is possible that some here developed this from the surgery. I have it from injuries to my feet, but many report they developed it after surgery, one woman I know got it post C-section, so why not after a craniotomy?
Once again, "Thank You!" for taking the time to not only read my post, but to reply. I sometimes feel like the only one going thru some of these things because I do not know of anyone else close to me that has gone thru this. This group and website are AWESOME! I once again got some of the answers I was looking for. Thank you again and know that you have helped a bunch!