Lump by screw from gamma knife surgery, anyone else?

Posted by jmb73 @jmb73, Aug 12, 2019

I have a lump where the screw was put in for my gamma surgery. It has become painful and I am not sure if I should see my PC or neuro surgeon or just leave it alone. I had my Gamma surgery on Jan 11. Has anyone had this problem?

Hi Joan, Glad the infection has cleared up! You may already know about wide bore MRI's, but if not, ask for one whenever you need an MRI. I am very claustrophobic and I always request a wide boar machine. It is a little wider on the sides, so you don't feel as closed in. Also, a mirror helps a lot. The mirror enables you to look in the mirror above your face and see out of the machine. You can see your legs and feet and you can see through to the glass and see the tech who sits behind the glass during the MRI.
I've been having headaches also for the last few months, but not my usual migraines. These headaches are very sudden onset, severe throbbing all of a sudden and always in my right temple. I had an MRI and MRA (to check for aneurysm) – fortunately, both were normal. I also have neck pain. I thought the headaches were causing the neck pain. You made a great point – maybe it's the other way round and could be my neck pain is causing these headaches. I'm going to look into that … Best wishes and please keep us informed on how you are doing, Jill

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I had the MRI's of my brain and neck. The tech had said 45minutes but she meant for each MRI so I was in the machine for 1 hour and 1/2. The Diazapan started to wear off after she injected the contrast. It wasn't pleasant but I did it! The infection is cleared from the brain but the neck MRI showed severe arthritis pinching a nerve and that is causing the headache. My PC wants me to go to pain management but I am going to use medical marijuana and it is keeping the pain manageable. My cardiologist is concerned about the pain as it can harm the heart and I have AFIB & PVC's.

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I didn't finish but hit the enter button by accident! I am concerned that the Diazapan didn't last the 12 hours that the PC said it would. When I had the Gamma surgery, they gave me Versed and I had an opposite reaction. It made me hyper! The nurse gave me my CBD and it calmed me down. The Dr. had told me to bring my CBD with me. I strongly recommend CBD for pain. I take .7mmCBD with .3 of THC and it takes the pain away or at least makes it manageable. I also use heat on my neck. I am afraid of neck surgery since I have such a low immune system especially IgM. Jill, you might have the same problem with arthritis in you neck and bone spurs pushing on your nerve. My PC showed me a picture of the nerve that goes from your neck to the top of your head and that is exactly where the pain/headache is. Sometimes it is severe – like now- and I am waiting for the CBD to kick in. Good luck and let me know how you feel and if your Dr. thinks it could be from the neck. Joan

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The MRI showed arthritis in the area where the nerves leave the spinal cord and my PC thinks that is causing the headaches. But the headaches are right at the pin site. The pain is severe at times and I wonder if the neurosurgeon hit a nerve when he screwed them in. My PC wants me to see a pain doc for a nerve bloc but I have had them in my hand and feet and they didn't work but they did hurt so I don't want one. The meningioma is stable. Any ideas?

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@jmb73

The MRI showed arthritis in the area where the nerves leave the spinal cord and my PC thinks that is causing the headaches. But the headaches are right at the pin site. The pain is severe at times and I wonder if the neurosurgeon hit a nerve when he screwed them in. My PC wants me to see a pain doc for a nerve bloc but I have had them in my hand and feet and they didn't work but they did hurt so I don't want one. The meningioma is stable. Any ideas?

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Hi, @jmb73 – sounds like you have questions about the cause of the headache and are uncertain about the nerve block direction your PC suggested. Have you checked back with your neurosurgeon or someone on his or her team about the pain at the site of the pins? If so, what did they say?

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I have not contacted my neurosurgeon as my PC said it was arthritis where the nerves leave the spinal cord. Do you think I should still check with him or his staff? The MRI showed the meningioma hadn't grown. Thanks

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@lisalucier

Hi, @jmb73 – sounds like you have questions about the cause of the headache and are uncertain about the nerve block direction your PC suggested. Have you checked back with your neurosurgeon or someone on his or her team about the pain at the site of the pins? If so, what did they say?

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I contacted my neurosurgeon and was told that the headache was not related to my gamma surgery or the pin site infection and to see a neurologist. My PC wants me to do PT so I will start that on 1/31. I don't know if I will be able to do the exercises as I have labyrinth vertigo. I just might keep putting my heating pad on it and using CBD &THC as they keep it under control.

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@jmb73

I contacted my neurosurgeon and was told that the headache was not related to my gamma surgery or the pin site infection and to see a neurologist. My PC wants me to do PT so I will start that on 1/31. I don't know if I will be able to do the exercises as I have labyrinth vertigo. I just might keep putting my heating pad on it and using CBD &THC as they keep it under control.

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I really don't have any headaches but I do use every evening CBD Oil and it does help to relax and I can sleep very well.

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I am sorry to hear that. Just get some rest and good sleep. Best thoughts. Ginette

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@jill333

Hi Joan, I'm sorry to hear you're still having problems from gamma knife. My pin sites healed within a few weeks. Have you contacted your neurosurgeon yet who performed your gamma knife about this? I think he would be a good starting point. My Best, Jill

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Hi Jill, Have you had a headache on the opposite side of where the meningioma is located? My neurosurgeon says it's not related and my PC says she thinks it's arthritis on my spinal cord but it's getting worse. My PC has sent me to PT and I just had my evaluation. She said that everything is really tight on the right side where I have my headache. I hate going back to Drs. as they don't seem to have any idea of what is causing this headache. Any ideas? Thanks, Joan

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@jmb73

Hi Jill, Have you had a headache on the opposite side of where the meningioma is located? My neurosurgeon says it's not related and my PC says she thinks it's arthritis on my spinal cord but it's getting worse. My PC has sent me to PT and I just had my evaluation. She said that everything is really tight on the right side where I have my headache. I hate going back to Drs. as they don't seem to have any idea of what is causing this headache. Any ideas? Thanks, Joan

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Hi Joan. I'm so glad to hear from you but sorry that you're not getting relief from headaches. I've gotten terrible migraines ever since I had my original meningioma resected in 2001 but they are on the same side. I control them with medication. Last year I started getting a very different type of headache (very sudden onset, very severe, only last a few minutes) and those headaches were the same side as my meningioma but opposite side from where I had a recurrence in 2017. My neurosurgeon did not think my headaches were related to my meningiomas. I also saw my neurologist about the headaches. I would recommend you see a neurologist if you can. They specialize in treating headaches. Mine started me out on Alleve every day which helped but when I stopped the Alleve, the headaches started up again. He ordered an MRA for me (which is similar to an MRI) to rule out an aneurysm. It was normal. Over a period of months, the headaches gradually grew less and less frequent. I don't know if this was a coincidence, but during the time I was having them, I had an appointment with my dentist. I told him about the headaches. He asked if I felt that I ever clinched my teeth or did I grind them, especially during the night while sleeping? He said I should first try to make a conscious effort not to do either of those, and if the headaches persist, to try a bite plate to wear overnight. It's like a retainer just for your top teeth that you sleep in. He said grinding and clinching your teeth can definitely cause headaches and he said a bite plate can be very effective. During the timeframe where the headaches became less frequent and finally stopped, any time during the day when I was stressed or rushing, I could feel that I was clinching my teeth. When I started focusing on not clinching them, that's when the headaches became more and more less frequent and finally stopped. Like I said, it could have been a coincidence, but I think it helped.
You've made a great start by consulting with your neurosurgeon and PC and trying PT. I totally understand about not wanting to see more doctors when they haven't helped so far. But maybe consider a neurologist and perhaps your dentist. Neurologists have all kinds of treatments for headaches. My brother-in-law is a retired neurologist. He sometimes taught patients techniques such as biofeedback to control headaches.
Have you seen a neurologist yet at Mayo or locally where you live? Also, if you can, try PT for a few appointments. I have a physical therapist that I've gone to off and on for years whenever my disc in my lower back acts up and the exercises she gives me to do are much more effective than pain med. Please keep in touch. Jill

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@jill333

Hi Joan. I'm so glad to hear from you but sorry that you're not getting relief from headaches. I've gotten terrible migraines ever since I had my original meningioma resected in 2001 but they are on the same side. I control them with medication. Last year I started getting a very different type of headache (very sudden onset, very severe, only last a few minutes) and those headaches were the same side as my meningioma but opposite side from where I had a recurrence in 2017. My neurosurgeon did not think my headaches were related to my meningiomas. I also saw my neurologist about the headaches. I would recommend you see a neurologist if you can. They specialize in treating headaches. Mine started me out on Alleve every day which helped but when I stopped the Alleve, the headaches started up again. He ordered an MRA for me (which is similar to an MRI) to rule out an aneurysm. It was normal. Over a period of months, the headaches gradually grew less and less frequent. I don't know if this was a coincidence, but during the time I was having them, I had an appointment with my dentist. I told him about the headaches. He asked if I felt that I ever clinched my teeth or did I grind them, especially during the night while sleeping? He said I should first try to make a conscious effort not to do either of those, and if the headaches persist, to try a bite plate to wear overnight. It's like a retainer just for your top teeth that you sleep in. He said grinding and clinching your teeth can definitely cause headaches and he said a bite plate can be very effective. During the timeframe where the headaches became less frequent and finally stopped, any time during the day when I was stressed or rushing, I could feel that I was clinching my teeth. When I started focusing on not clinching them, that's when the headaches became more and more less frequent and finally stopped. Like I said, it could have been a coincidence, but I think it helped.
You've made a great start by consulting with your neurosurgeon and PC and trying PT. I totally understand about not wanting to see more doctors when they haven't helped so far. But maybe consider a neurologist and perhaps your dentist. Neurologists have all kinds of treatments for headaches. My brother-in-law is a retired neurologist. He sometimes taught patients techniques such as biofeedback to control headaches.
Have you seen a neurologist yet at Mayo or locally where you live? Also, if you can, try PT for a few appointments. I have a physical therapist that I've gone to off and on for years whenever my disc in my lower back acts up and the exercises she gives me to do are much more effective than pain med. Please keep in touch. Jill

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Hi Jill, I'm sorry that you are having headaches too. I do think you are right about stress causing some of them. I did ask my dentist and he checked to see if I was grinding my teeth at night and I am not. He didn't think it was related. Mine come on the opposite side of the meningioma and are really sharp and intense for a short time. I have to stop what I am doing and take CBD or a Tylenol and sit down. If possible, I put a heating pad on that side of my head and it helps with the pain. Once the severe pain is gone, I have the headache- only milder. It varies from all day to an hour. I can't take anything like Aleve because I now have AFIB and get lots of PVC's. My PC has sent me to PT and my evaluations showed that I was really tight on that side. My endocrinologist sent me to a neurologist but he was not concerned about the headaches and focused on my middle finger of my left hand that has a slight tremor! He said I would be severely shaking in 2 years and to come back then. I won't be going back to him. My neurosurgeon suggested a neurologist but I didn't know they had treatments for headaches. I hope the PT works and it's good to hear that it works for you. My PC has me down for 9 sessions but the PT said I might need more. If they don't work, I will go to another neurologist. I am having a lung evaluation on Fri as I have asthma, COPD and institional lung disease. I have been having to use my inhaler more often. Maybe that is causing the headaches. Some days, I feel like I have to figure out the diagnosis myself. Thanks for your help.

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