Not sure where to start but I'll give it a try...i'm on dexamethasone steroid since early Aug due to brain edema as a result of Gamma Knife treatment back in October last yr.
I had to go to ER due to headaches and a quick CT revealed brain swelling in early August so I was put on a tapering off dose of steroids. Then just within a weeks gap after I finished off the full dose, swelling came back and it was so significant that my right hand dropped one morning and I had to go to ER again, again a quick CT revealed edema and this time it was very significant!! My right hand got another drop while staying in hospital, it got weaker and weaker(I was warned before the treatment itself so it didnt come as a surprise!) and they kept me in for about 10 days until I started gaining some strength. I was discharged from hospital on the dose of 12 mg/day of dexa and now reduced to 4 mg over the period of 40 days. My neurosurgeon is concerned that every time I taper off quickly, edema returned back so he is taking it slowly this time and wanted me to stay a bit longer on a particular amount of dosage instaed of just 3-4 of days (which is pretty standard), but Im seeing significant adverse side effects of steroids e.g. muscle weakness is the biggest one!! so balancing the dose in agreement with my neurosurgeon seeing adverse side effects and gaining 80-90% strength in my right hand too.
Is there anyone out here who has to stay on Dexamethasone for a longer term and if so what balancing method your neurosurgeon/neurologist used to find the correct dosage..as its quite tricky to get it right and fully taper off. How long it took to fully come off? Did you have frequent MRI/MRV's/CT's? Are there any other alternative steroid which you'd have put on, prendinsone is what i've heard of..which may be have less side effects than Dexa.
I'm also on 75mg Topamax which is giving me huge concentration/word losses, its an antiseizure medication now that edema is there my nrurologist is concerned that im at risk of seizures, so he put me on an anti-seizure medication.
Thanks for all your replies in advance.
Thanks Eileen for sharing your father's experience and information. I know what you are trying to say..but in my case the doctor doesn't know the right amount of dosage until he refer me for a MRI. I'm in constant touch with him and he is comfortable with me reducing the dose so im ok on that part keeping a close eye on edema coming back symptoms, afterall its a balancing act which we have to bring with the adverse side effects which Im experiencing. Anyway, i'm meeting him again next Tuesday and hoping for a MRI this time as I haven't got it done since early Sept to know the curent status of edema after consuming so much of steroids :(
I had gamma this past February. I've had one grand mal seizure since my surgery and partial.absence seizures since then. I'm on my 4th cycle of steroids from edema.. I'm on 300mg of Topomax now which is on the increase within the next 6 months for seizure prevention. I too have concentration and word losses, but I'm not sure if it's from the topomax or the from the seizures. Best of luck to you. I hope things get better.
Your case is almost identical to mine. I had an embolization then Radiosurgery (like your gamma knife) on month later. I had complications and brain swelling. I was on Dexamethasone and it was awful!! Once swelling was under control, my docs did a 3 day taper and my thrombosis came back & I Lost function on the left side of my body for the 2nd time. They did a much slower taper 6 weeks and that worked. One year ago I came off Steroids completely with still some deficiancy on my left side. I went to PT appts twice a week , too. Over this past year, I am slowly getting better and better, I am now about 98%. Keep up your physical therapy. I bought some home hand exercising PT equipment like a foam ball and a little plastic device where you open and close your fist & fingers to strengthen along w/ a 5lb exercise ball, rubber yoga band, etc. I am on Tegretol for anti seizure although my AVM was occluded, and that drug has been minimal side effects. You have to just get through the steroid phase the best you can. It sucks...the weight gain,irritability, etc on top of everything else. I was like you ...I was worried that the Dexamethasone would end up being a chronic treatment for me and luckily it was not. It did its job and I was able to come off the meds successfully. So, listen to your docs and muddle through this awful phase...I am willing to bet you will have success coming off steroids w/ a slow taper. Too bad the docs don't take that approach to begin with. I am doing so well, I have an MRI and a visit w/ my doc only a once a year (It was twice a year). Hang in there and good luck!!
I forgot to add, I'm on dexamethasone now, I was on prednisone before on my first 3 cycles and I think I handled those much better than the dexa. The prednisone made me feel better, more "alive, active". I feel sick to my stomach, irritable and just sick on the dexamethasone. Hope this helps.
Thanks Zilly74 and Caroline for your replies.
I'm hoping to fully taper off in next 2 weeks(on a dosage of 1mg now), had MRI done 2 weeks ago and the edema was fully controlled but my neurosurgeon didnt want to rush and stop the steroid as he fears every time I stop my edema comes back so take it slowly this time.
Zilly74, luckily, I never had seizures(may be some focal seizures?)..so not sure if topamax is needed for me? My neurologist put me on topamax initially for headaches, which he thought was due to migrane but in my opinion I had edema all the time since I recd GK treatment and my headaches are due to that and not migrane...later he got more concerned that with edema I may start to get seizures..so I'm taking topamax as a precautionary measure..i dont have any experience of Predinsone but Dexa seems to be v strong in terms of side effects. I was talking to GP as well and he said all steroids are kind of same when it comes to side effects...some people may feel less than others.
But personal experience does matter... that's why I posted this question. Hope you feel better soon and wean off Dexa.
Caroline, did you also have edema soon after you recd GK..and for how long it continued before you could fully taper off?
I was on decadron for almost all of last year for brain swelling and radiation necrosis. Good awesome news is AVM is gone, but i have radiation necrosis and chronic brain swelling right now. It is ALOT better than it was after doing steroids and hyperbaric oxygen therapy most if 2011. I had gamma knife 3 years ago, swelling started 1.5 years after. Decadron was really effective for me at high doses, Not very effective at lower doses for me. (24mg/day) for I think about a week, then tapered slowly to maintenance dose of 4mg.
The side effects were no fun, but The swelling was making me feel so bad they were worth it. AVM was in left parietal, motor cortex, draining through occipital. Had increased headaches, and numbness/weakness on my rt side, also just couldnt think straight.
First i had bad swelling, so we did steroids for about 8 months. I did a couple months of PT and OT at the stroke rehab center run by the hospital. I did get most of my right hand function back, and my leg does not drag nearly as much as it did. I think i got way more benefit from the hyperbaric oxygen therapy than the steroids.
When the swelling turned into radiation necrosis they started hyperbaric oxygen therapy (HBO2). That really really helped the swelling and healing the necrosis. It’s an extreme commitment but its the gold standard for getting rid of edema, and healing radiation necrosis. Steroids are definitely much less expensive and don’t involve living in a can 9 to 30 hours/week for months
I am so sorry to read about what a terrible time you are having. My 15 year old daughter is due to have Gamma Knife in the next few weeks, it has really frightened me after reading what has happened to yourself and many other people. My radiographer told me that there were no risks, but obviously there are! Really unsure about it now.
Hey did you regain use of your right side?
Yes Katie, I did regain use of right side eventually after 3-4 weeks dose of steroid..
Lisa, I can understand your concern towards the treatment. I hv been told all the risks before the treatment and to be honest i'm bit disappointed but hv to say not totally surprised to see side efects as my AVM was a decent size and I received a high dose so make sure you do understand the risks - both short and long term. This varies depending on location and size of AVM and everyone reacts to the GK differently, there are many positive stories out there too..where AVM is obliterated in a year's time. Well for me as well, there is a reduction of about 65-70% in AVM in year's time so thats a fantastic result..one of the radiographer says the rate its shrinking, it will be obliterated in next 5-6 months so while I'm going thru a lot of painful time, I see light at the end. The risk of bleed has reduced significantly...
I wish your daughter Good Luck!!
Ky, thank you for your rely. I can't believe we haven't been made aware of any risks, maybe it's because it is a small avm. I am so pleased to read that yours is shrinking and the risk of a bleed has been reduced but what a dreadful time you have had getting there! I guess its a risk which ever road you take! Mollie has been told hers will def bleed again and she may not be so lucky the next time and gamma is the only option for her. All the best to you ky, keep in touch.
I have had Embolization & GK in the past 4 years. I have been on dexa for over 2 years with different mgs at different times. The most was 24 mg/day & I was in the hospital at that point, then 16 mg a day & 4 mg/day after that for quite a while( which I am now) I have been off& on steroids for two years, & my doctor hasn’t seen swelling this bad do r this long, EVER.
I hate the side effects I have with the meds & wish VERY badly I could get off them, but I go for MRI in 3 months & hopefully I can start to taper off of them.
good luck with it Kimberly. I can understand what youmust be going thru! I tapered off fully at the start of Dec and since then had one MRI which showed some edema but my neurologist didn’t put me back on steroids due to long term side effects and ordered a 6 week follow up scan again to check if swelling is increasing or my body started to cope up…i hv no problems other than very regular headaches.
I was on varying amounts of dexamathasone for brain swelling which resulted from Novalis radiation treatment.
Every time my neurosurgeo lowered the dosage, the swelling returned. Tapering off was very difficult.
It look approx a year to a year and a half, then another two years for my system to get back to normal.
Had my treatment in Oct 2007, swelling commenced April 2009, on dexamethasone through Oct 2010.
24/25 MRI's, AVM completely obliterated, still have scar tissue which will affect my balance for the rest of my life but am feeling wonderful.
AVM in cerebellum approx 5cm. Specialist suggested I go on anti seisure meds but luckily I decided to wait and everything turned out fine.
That sounds promising that you’re still off of them though. So,you aren’t having any headaches or anything like that? that is SOOO awesome for you not to have headaches right now. I would LOVE to not have headaches for one day.
I have an MRI and doctors appointment at the end of March. I really hope that I can get off the steroids the because I’m hating them and I’ve been on them for so long. It has been too long since I have been on them. How long were you on them?
my husband had his in his serebellum as well, and is having same problems you did. Did they say if you have nicroses form the radiation?