Would someone please tell me that the holes in my head are going to feel better some day!

I thought I was doing better with the pain after my craniotomy (6 mo. post op) until my neurologist told me to taper off Advil/Tylenol until I am basically down to zero pills. He said if I don’t, it will start to aggravate the brain instead of help with pain over time. ??? Well, it’s not working! I was taking 2 Advil then, 1 ex Tylenol, then 2 Advil, and 2 ex Tylenol before bed. I felt I was finally managing the pain. And at least I was off the strong narcotics. I thought I was doing pretty good. Now I am down to 2 Advil all day and 1 ex Tylenol. and the holes and where they cut between holes hurts! I don’t know how long I can put on a smiley face if this keeps up and pretending I am doing so great to family and friends, especially when I have 2 weeks until zero pills. Thanks, I am not in a very good mood right now.

I am 6 months post op myself. I found that putting a cool rag on my holes has made it feel less weird. I wouldn’t say it is straight pain, but it is definitely not cool with me. I hope the feeling goes away. It could be the nerves reconnecting as well. I know I have pain in different spots on my face and head that go away and then pop up in a new spot.

I definitely know how you feel. My head never stops hurting, not really the holes…I get really bad tension headaches. I was on Tylenol #3 which did nothing…then my doc put me on Fioricet, which worked beautifully, 1 pill in the morning and no pain all day… but now the fioricet doesn’t work at all. I guess my body has built resistance to it. It only works if I take more than one, which I only take if the pain is extreme. I just wanna know when this pain is gonna end, cause I feel like I can’t function. I’ve had a headache for 7 and a half months. I keep asking my doctor and he acts like the pain is not normal and does not take me seriously.

I feel for you guys. I hope you each find something that works for you. Sometimes, when we’ve done all we can do, we just have to give it over to God. (Actually, maybe that’s the FIRST thing we should do!) In that spirit, here’s the prayer I’m saying today: Lord, please give Sue, Mary Kate, and Jamie a headache-free day today. Let their heads feel light and unencumbered today. Give them relief today – if only for a day. Lord, help them find a way to use their pain and suffering for Your glory. Give us the purpose You want us to have. Thank You for Your compassion and the compassion You’ve given us for others. Help us to use that compassion, just as Ben has done in creating this “family”, to help others who are suffering. We ask this in Jesus’ name.

May each of you have a blessed day today.

Thanks for the prayer, Kelly.

Kelly Nelsen said:

I feel for you guys. I hope you each find something that works for you. Sometimes, when we’ve done all we can do, we just have to give it over to God. (Actually, maybe that’s the FIRST thing we should do!) In that spirit, here’s the prayer I’m saying today: Lord, please give Sue, Mary Kate, and Jamie a headache-free day today. Let their heads feel light and unencumbered today. Give them relief today – if only for a day. Lord, help them find a way to use their pain and suffering for Your glory. Give us the purpose You want us to have. Thank You for Your compassion and the compassion You’ve given us for others. Help us to use that compassion, just as Ben has done in creating this “family”, to help others who are suffering. We ask this in Jesus’ name.


May each of you have a blessed day today.

Hi Sue:
Interesting the doctor was advising you get off the Tylenol and Advil. I have been taking Tylenol recently and thought it was safe as long as I don’t drink alcohol. I don’t drink except for a glass of wine or a beer two or three times a year. I have a dura arterio venous fistula which is similar to AVM’s. I have the rare type, where the blood is flowing in reverse. I don’t know how long that can go on. I have had 3 embolizations and having the gamma knife next Tuesday. I will have to see what my doctor says about the Tylenol.

Dewdo from the other Washington

Hey Dewey,
I don’t understand the big deal about Tylenol either or taking Advil for that matter. The other thing I was told, about too much Tylenol over time, is it can cause a lot of irritation to your stomach. I am only taking 2 Advil and 1 Tylenol per day now and it isn’t helping much. I hope your gamma knife goes well and you will get your av fistula under control. My first of 3 avm’s was also a dura av fistula and the embo worked on it. They didn’t say anything about the way the blood was flowing. I wish you the best!

Dewey M Reynolds said:

Hi Sue:
Interesting the doctor was advising you get off the Tylenol and Advil. I have been taking Tylenol recently and thought it was safe as long as I don’t drink alcohol. I don’t drink except for a glass of wine or a beer two or three times a year. I have a dura arterio venous fistula which is similar to AVM’s. I have the rare type, where the blood is flowing in reverse. I don’t know how long that can go on. I have had 3 embolizations and having the gamma knife next Tuesday. I will have to see what my doctor says about the Tylenol.



Dewdo from the other Washington

I had my surgery in nov. 08 and I still have pain. Some days are worse than others. Some days I have to go get a pain shot to get some relief. My doc is sending me to a neurologist to see if there is something else that can be done for me. My head is worse when there is bad weather coming in. My neurosurgeon said that there is no telling how long it will last but it is normal. Find someone who will listen to you cause you dont deserve to stay in pain.

mary kate said:

I definitely know how you feel. My head never stops hurting, not really the holes…I get really bad tension headaches. I was on Tylenol #3 which did nothing…then my doc put me on Fioricet, which worked beautifully, 1 pill in the morning and no pain all day… but now the fioricet doesn’t work at all. I guess my body has built resistance to it. It only works if I take more than one, which I only take if the pain is extreme. I just wanna know when this pain is gonna end, cause I feel like I can’t function. I’ve had a headache for 7 and a half months. I keep asking my doctor and he acts like the pain is not normal and does not take me seriously.

Christine, I am so sorry to hear you’re still experiencing the kind of pain you are after two years out. I would really like to know what the neurologist has to say after you see him. My neurosurgeon told me that whatever pain I have after one year, is what I would be left with and would have to live with it from then on. Have you heard that before? That doesn’t sound very encouraging to me. Have you figured out why some days are better than others? Is there something that triggers the pain?

Christine said:

I had my surgery in nov. 08 and I still have pain. Some days are worse than others. Some days I have to go get a pain shot to get some relief. My doc is sending me to a neurologist to see if there is something else that can be done for me. My head is worse when there is bad weather coming in. My neurosurgeon said that there is no telling how long it will last but it is normal. Find someone who will listen to you cause you dont deserve to stay in pain.


mary kate said:
I definitely know how you feel. My head never stops hurting, not really the holes…I get really bad tension headaches. I was on Tylenol #3 which did nothing…then my doc put me on Fioricet, which worked beautifully, 1 pill in the morning and no pain all day… but now the fioricet doesn’t work at all. I guess my body has built resistance to it. It only works if I take more than one, which I only take if the pain is extreme. I just wanna know when this pain is gonna end, cause I feel like I can’t function. I’ve had a headache for 7 and a half months. I keep asking my doctor and he acts like the pain is not normal and does not take me seriously.

Thanks for your Reply Sue:
I went through the gamma knife procedure yesterday and the worst part was attaching the halo and having to kid still for 6 more hours.

Today I have just a mild headache so far and was able to sleep good last night after 14 hours at the hospital. My wife and granddaughter spent the day with me so the time went by faster. The nurse that was attending me was great. I had the usual backache and headache I get after the angio and she was attentive to my discomfort with the proper medications.

Thanks again
Dewdo from the other Washington

Sue Roth said:

Hey Dewey,
I don’t understand the big deal about Tylenol either or taking Advil for that matter. The other thing I was told, about too much Tylenol over time, is it can cause a lot of irritation to your stomach. I am only taking 2 Advil and 1 Tylenol per day now and it isn’t helping much. I hope your gamma knife goes well and you will get your av fistula under control. My first of 3 avm’s was also a dura av fistula and the embo worked on it. They didn’t say anything about the way the blood was flowing. I wish you the best!

Dewey M Reynolds said:
Hi Sue:
Interesting the doctor was advising you get off the Tylenol and Advil. I have been taking Tylenol recently and thought it was safe as long as I don’t drink alcohol. I don’t drink except for a glass of wine or a beer two or three times a year. I have a dura arterio venous fistula which is similar to AVM’s. I have the rare type, where the blood is flowing in reverse. I don’t know how long that can go on. I have had 3 embolizations and having the gamma knife next Tuesday. I will have to see what my doctor says about the Tylenol.

Dewdo from the other Washington