I had an occipital craniotomy. The headaches have been cumbersome and persistent. The medication has been ineffective. I was just told that the source of the pain is from the surgical screws becoming displaced from the plates. They have created a chronic source of irritation to my scalp. This triggers chronic muscle/headaches. Please advice about options. Thank you
Well, the obvious answer is for the craniotomy surgeons to go back in and surgically fix the screws. These things do happen, they can do a scan of your head to see if the source is indeed the screws becoming displaced. If it's not the screws, the scan might reveal what IS going on in your head to cause your headaches. If they find nothing, then could be a muscle spasm is doing this, and depending on exactly where you feel the headache, either massage or acupuncture might give you relief.
I have had both MRI, MRA and physical exam. told by physican that the screws are definetely displaced. I went through much PT and acupuncture, no assistance. I am hesitant to undergo surgery again, it was grueling and it is predicted that I would have a large hematoma post op. Any suggestions are welcome.
Occipital encephalomalacia of the Right cerebellar hemisphere was noted in the MRI/MRA- could this be leading to visual problems since surgery?
Any abnormal reading on an MRI has got to be taken seriously, not only becuz of its possible effects on your vision, but in your thinking, too. Look, it is not a good thing to have loose screws like you've got. The screws and loose plates can cause a lot of damage if they push in on the brain, which apparently they already have with the encephalomalacia. Accept that you've got this health problem and, from time to time, you might need an operation. I've got a bad back for almost 40 years and the discomfort has never let up, but I don't avoid treatments just because it healed up fairly well the first time. Just take off some time to get all this done and to get any resulting hematoma straight. If you want to know what it would be like to lose your vision in one eye, wear a patch over it one day, and you'll make the appointment.
Thank you for the feedback. I understand the need to try to correct the adverse reaction to the screws/plate. I am hesitant to return to the same surgeon and having difficulty finding a new neurosurgeon willing to do the clean up work. I routinely get medical care, as needed, necessary with any chronic condition. Suggestions for finding a neurosurgeon willing take on a case where they would be repairing anothers work?
What I meant by routine treatments is for your head repair. Docs will sometimes find something amiss, which happened to you, and so it has to be a regular course of things to fix it. I can surely understand your hesitance in returning to the original surgeon. Therefore, your regular family doc can make a referral for you to a new neurosurgeon. If you do not have a family doc, then you can go to the county health clinic in your area, see a doc there as a walk-in usually same day, and they can do the referral. (You need a referral under most health care plans.)
I suppose the answer you are looking for is, can you live a normal life with some sort of treatment other than surgery. The answer is no. If you didn't have symptoms, tho, then no need for surgery, even with loose screws. But you report headaches, scalp irritation, and if I understood you correctly, some vision changes. But let's say your vision is not affected, and you're just dealing with distressing pain. You have already said the medicines they're using are not effective.
So, you need much more powerful medications, if you can find a physician who is willing to give it to you. If not, you can go to a pain clinic, they understand how bad things can get, and while they will want you to have surgery eventually, they probably will give you some more powerful drugs, probably in the morphine family. Or you can go to a sports injury clinic, they also are quite good at treating painful conditions and more willing to give you the drugs you need. Then there's the option of getting shots of perhaps cortisone at the location where the surgery was done, it numbs nerves for various lengths of time, up to around two months; then you have to go get another shot.
But back to the vision thing, if you're having changes in vision, coupled with the pictures showing the brain operation mechanics failed, by not having surgery, it's like having a knife broke off in your eye and you sitting around more afraid to get it out than losing your eyesight. I am really sorry you are faced with these hard decisions, but you must stand in your fear, use it to push you to the treatment you need, and not only get pain relief from an operation, but also perhaps save your eyesight, not to mention the real possibility of brain damage. I hope this reply helps this time.
Thanks. Medication is not the option, they dont work, any of them. And there are limited options for me due to a hemorrhaging disorder, underlying other issues.
I have been trying to see other neurosurgeons, they just dont want to correct/fix a situation related to someone elses surgery. I have several of my specialists calling all neurosurgeons they know, to see what they can do. I am not ignoring this, just frustrated at the reality that I was put off for so long, being told the pain would eventually get better and in reality, it was loose hardware, getting more loose. I am not an alarmist and just want to be taken seriously. I have already seen two eye Docs, another 2 to come. Thanks
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