2 yrs ago I had brain surgery to remove a primitive neuroctodermal tumor of the pineal region, I have had MRI's & blood work every 3 mths and have had no re-occurance to date. Then a week ago I got a severe headache with visual disturbances, numbness in my finger tips, stumbling when I walk. I was admitted into the hospital and given an mri, ct scan, and spinal tap and there is no evidence of a re-occurance of cancer, or of meningitis but the headache persists. I was discharged from the hospital only to return the next day with the same symptons and given a pain shot and released within 20 minutes of seeing the Doc in ER. I am now on day 8 of the headache with no releif, & cant even get out of bed longer than a few minutes. Any exertion of any type is excrutiating, even standing or using the restroom aggrivate the headache. My vision has not returned to anything close to normal. A Duragesic pain patch offers some relief but are outragously expensive. I cant tolerate this pain, could I have a pinched nerve? I was never offered a diagnosis as to why I have this sudden onset headache. This is the first headache of this type post brain surgery. Any suggestions would be greatly appreciated.
Its not immediately clear what the headache could be
It seems that some serious possibilities like a reoccurrence of tumor, bleeding or buildup of brain pressure (hydrocephalus) have been ruled out by the tests you have had
If the pain is worse on standing rather than lying down is would be suggestive of a low CSF pressure headache (low volume of fluid bathing the brain). Sometimes this can be from a small tear in the dura (or covering of the brain/spinal cord). However it seems to have started before your spinal tap, and there does not seem to be another reason for a tear, but they can occur spontaneously - did they measure the spinal fluid pressure during the spinal tap?, often it is not done, but it provides a lot of information.
If it is a low pressure headache, tests (such as nuclear medicine scans or a CT myelogram) can be done to find the leak and it can be plugged.
Duragesic and other opiaites are not good drugs to be on in the medium or long term. Have they tried a medrol dose pack (steroids) to break the headache? You may need to seea headache specialist if yo uhave not already. If you are in the area, the Cleveland Clinic Headache Center could help.
What I believe you are experiencing is a low pressure headache with photophobia caused by CSF leakage during your lumbar puncture. You will find the headache is bearable when you lie flat but can become extreme when standing. I suffer from migraines and when I had a spinal tap, the headache began the following day and lasted 9 days!. A blood patch may help but the headache should resolve without the patch. Hope this helps..... Chris
well, unfortunately the headache started days before the spinal tap, and now he is experiencing fits of anger for no apparent reason. He has always been a very passive kind person, this is the first I have ever seen him be angry at anyone. I am at a loss as to whats wrong with him...
Yes, they did measure the pressure of the spinal fluid and said it was under pressure, which I guess meant that there was to much pressure at the time of the lumbar puncture. The aggitation seems to have stopped now that he is in a hospital room and not in the ER. The vision has cleared for the most part, he has taken a round of steroids. But, his eyes are dialated. Hes been seeing a team of doctors, including a neurosurgeon and at this point they say that there is no obvious reason for the headache to have occured. We are all at a loss... Is it possible that when he was stooping over (the day the headache began)that maybe the shunk got flooded or something of that effect? Oh, and we did have a neurosurgeon come tell us that it is not uncommon to have side effects of radiation even 2-3 yrs later. Also, could it be scar tissue from the removal of the tumor pressing on a nerve?
I have an update, after I had a repeat lumbar puncture at another hospital I found out that the cancer has returned in my spinal cavity. They found some spots on my MRI that indicate drop down cells into my spine and possibly some cells around my brain. Also my testosterone level is low, as well as my growth hormone level. They wont do anything for the growth hormone because I am an adult and thats not something that needs immediate attention. They are going to give me a monthly shot for the testoterone. My neurosurgeons have scheduled Blood Brain Barrier Disruption/Chemotherapy. They are hopeful that this treatment will be successful for me. We shall see. I still have the visual problems, sometimes even see things that arent there. (thought I saw a colorful butterfly this morning on my shoulder, it was bizzarre) Anyway, I will keep you all posted.
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