Steroids 18 months after Gamma Knife.

[Nks425]

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

[sporan]

Fortunately I haven't had surgery or gamma knife but radiotherapy at some point is a real (undergoing assessments, scans etc at mo to check viability) possiblity as I have a very slow growing diffuse tumour in the left temporal lobe which isn't suitable for surgical removal.

I can sympathise with the headache issue though, although ther is no pressure in the brain there is tension in the neck added to other things caused by the location of the tumour means a daily headache varying from mild to severe, usually some where near the top end of inbetween if that makes sense.

I don't think many peple who haven't sufferd from them realise just how draining and dibilitating they are.

I use paracetamol, tramadol and Maxalt which is a migraine treatment of a disolvable tablet that is placed on the tongue, it's brilliant but expensive so reluctant to prescibe and you can only take a maximum of two in any 24 hrs, no less than two hours apart and the 24 hrs is from second dose. The maxalt isn't suitable for every one and so may not apply to you. I keep mine in reserve for the 'I'm gonna stand in front of the first express train I see' type headaches.

I hope that your current treatments will, at the very least, deal with the headache.

Take care

Sporan

[Nks425 in reply to sporan]

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

[sporan in reply to Nks425]

Your welcome Niyani,

It's what this forum is for. There are many here that are willing to listen and share if they can.

I hope to that the swelling will soon subside and the pain will ease for you.

Geoff