Still trying to get rid of headaches to where I can at least function.
First they gave me a occipital nerve block without steroids. This consisted of two shots in my head and two in my neck. I went two weeks and it did not work.
I have tried everything up to this point.
After speaking with my Neurosurgeon we decided it was
time to have another MRI.
There is a ring around the AVM which they believe is an edema which means swelling and inflammation in the brain. Only 5% of patients get this from gamma knife so lucky me. Excuse the sarcasm. On a positive note the swelling is not all over its just around where they did the gamma knife.
I have started a 2 week regimen of steroids which have started tapering off this coming week. The steroids have made me feel nauseish and I can’t sleep. The back of my head and nevck feel funny but that I think is still the nerve block.
I am also on Pentoxifylline 400mg. It’s purpose is to help the blood flow more freely through narrowed arteries. It increases the oxygen that can be delivered by the blood. I will be on this for several months. I am on vitamin E that is to help my skin from getting too dried out from all the drugs I will be on that as long as I am taking the above meds. I also take the Gabapentin, 300 mg twice a day, which is almost going on a year.
They will do another MRI to see how this treatment is going but that won’t be for 6 months.
If this works I believe I will know by the reduction of my headache.
I know this does not resolve the hemorrhage that occurred.
So I will continue to work on my exercises for my left side and get back whatever is possible. When I get my energy back.
Having 100% recovery is not possible but at this point I would be happy to just get rid of the headache.
Thank you for taking the time to read!
Niyani
Hi Niyani, I understand your pain completely :( , I have suffered from what I would say is the same headache since my rupture Dec 31st 2013 :( the only gaps in pain are when I take stronger pain killer meds which I have been trying not to use, So I take 2 first thing in the morning to allow me to operate and get my day started, Then take lower dosage ones through the day when needed and then 2 more strong ones before bed to allow me to get to sleep. My Neuro feels that the headaches are due to the damage from the haemorrhage, and they haven't gotten much better at all since my AVM was removed 7th July 2014. I hope you find relief soon :) , Take care
Thank you for taking the time to respond. I wonder many times if GK was the right choice. Not sure I would have done things differently. My bleed was in the cerebellum so not the best place to have surgery. I had got to where my headache was mild before the GK in September 2013 but since then it has been full force. So I will continue to pray and hope once the steroids are done the swelling will be gone and my pain is gone or at least more in check to where I can function. Thanks again for your support!
Niyani
Hi niyani, im sorry to hear that you are suffering so much and having to take so much medication. I myself had gk a week ago and did start to wonder if I had made the right choice to have it as my headaches seemed so bad. Luckily i seemed to be improving and things are calming down (im glad becuase I have to have gk again in 6 weeks. Wishing you well and hope things improve for you soon.
Thank you for your response. I wonder about the headaches what is causing them. I know the scan shows swelling so does that mean the swelling has been there all this time after the GK? I know it must be difficult to always pinpoint the problem when the swelling is not all overall trying to figure out is causing the pain. I guess my frustration is I have had several MRI’s and an angioplasty since the GK in September 2013 did they not see the ring sound where they did the GK. I know even this time it was like they felt that’s all it could be since they have tried everything else.
After the bleed in April 2013 it took awhile to not have a headaches that was so bad you could not function. I know I was able to go without any meds or just take a cover the counter headache meds well I pray this works. I truley have not felt this bad for a long time. The steroids are truley doing a number on me. Thank you again I am so sorry to ramble on and complain!
Glad you are on steroids. When I was about 18mo post gamma knife I got brain swelling, very similar to what you described. The headache (which started with the bleed and hasn’t really ever gone away) got a lot worse with the brain swelling and added nausea and numbness and weakness on my right side. Despite high doses of steroids, the swelling progressed to a really bad case of radiation necrosis which almost killed me. The only thing that helped the swelling and the radiation necrosis was hyperbaric oxygen therapy. I would strongly suggest following up with the radiation oncologist who did your gamma knife for a referral to a hyperbaric medicine doctor to see if you might be a candidate. Hyperbaric oxygen therapy is the gold standard for treating brain swelling and radiation necrosis. Many insurance plans, including Medicare, will pay for HBO2 therapy. It’s expensive and a giant time commitment, but in my case it saved my life and gave me back a lot of function on my right side so totally worth it. Still have the headache but it isn’t as bad as it was when I had brain swelling.
The really good news, though, is that the brain swelling means the radiation is doing its job and collapsing the AVM. That was the case for me and several other people who have done gamma knife on this site. Best of luck - my brain swelling was pretty awful and I’m sorry for anyone who is going through it!
I am having gamma knife next year . I had an appointment today and I am waiting until the first of the year and my Dr was ok with that because they got 98 percent of my avm with an embolization.
I am reading so many bad things about gamma knife and I’m so scared to have this done because I feel so good now .
Can anyone give me any fees back of positive gamma knife procedures.
The question I’ve got for you is “Do you think it is important to have the gamma knife and get rid of the 2%?” And I’ve got another one which is “Can you do anything about the risks?”
I think the answers are “yes” and “no” in that order.
Now, I know this is difficult to do but you know what? You’ll do a lot better to put the difficulties out of your mind – certainly for the moment. My wife, when she feels poorly for some reason always thinks the worst. If she feels bad on a Thursday and rings for an appointment with the doc and gets one for Monday will mither her way all through the weekend and then when she sees the doc, he gives her a prescription for a bunch of tablets and she comes away with none of the fears that she had. All resolved on a Monday morning in ten minutes. If she hadn’t worried about the worst possible outcome all weekend, she could have had a nice weekend, albeit not feeling very well but no, she bothers about it 100% and the weekend is predictably and uniformly crap.
It’s normal to worry about stuff like this but it’s really best if you put it out of your mind as a possible challenge for after your treatment, not before. Can you do anything to mitigate it? If so, do that mitigation. If not, I really recommend finding something else to keep you busy and not thinking about it.
I bothered about my embolisation. I bothered about it pretty much the whole way and a good distance afterwards, too. Honestly, it isn’t worth worrying so permanently about something you can’t influence. I set myself a little project to do. That filled my mind better than leaving it space to think too much.
Do something to fill the void.
You’re worth it, as they say in one of the adverts!
Thank you so much. I’m trying not to think about it and I am going to give myself a project to do.
I did this with my embolization too and came out with flying colors. It’s just scary when they put all this in front of you .
But thank you for always giving me the best advice I appreciate it
Keep talking. Keep telling us how you are and don’t let me stop you talking. That but is important. But I don’t think it’s a good plan to be researching all the things that can go awry!!
My wife also has a knack of being able to write the patient leaflets for most of the drugs she has: every time she gets a new prescription, she seems to manage to get most of the side effects! We don’t need the leaflet!
That sounds like me I’m always on google and i have read a lot of people in here say they have algae bad experiences with gamma knife .
I drive myself cray sometimes.
And I enjoy talking to you all it helps a lot .
