I took steroids for 8 weeks and got off of them and then the swelling came back causing me to have jerking siezure activity last friday they put me back on steroids to prevent me from having grandmals.i still fell like there is someone pushing on my right shoulder,weakness on my right sideall down tingling on my face and right arm still and a headache that just wont go away.i want to know if anyone had to deal with this and how long does it take for the swelling to eventually subside or whatever.its very depressing.i want to be better and i have 4 children that i dont get help with to take care of or help me.and i have nausea feeling like i am going to throw up.still waiting for doctor to call me back.
Hi Amber, My daughter has had 2 Gamma Knife’s & 1 linear accelerator and she also has delt with swelling and steriods. She had her 1st grand mal 6 weeks after the LINAC which was in April of 09. We finally got her seizures under control with meds and she has been seizure free (at least from Grand mals) for a year now. Hang in there. Be sure to log all your symptoms and be your own advicate. The swelling may be there for up to a year…but if you can control the siezures with meds…you should be fine. Maybe ask them to increase your dose? Take care-Kim
Hi Amber. I did a search on here for radiation necrosis...
http://www.avmsurvivors.org/main/search/search?q=radiation+necrosis
There is bound to be info there to help you! Good luck!!
Oh my where to begin. Folks plz forgive me for a lengthy post as I just don't know exactly how to put things but here goes...
My daughter, now age 29, was found to have a brain avm, forgot the size of it but it wasn't huge but wasn't tiny either. After failed attempt to glue it shut, she had Gamma Knife done. This was 3.5 yrs ago. Last check up the avm was dead and there is nothing but necrotic tissue floating around in her brain. This of course causes swelling which causes terrible headaches which means she must be on steroids which are counterproductive to the mental issues she has been having since all this began. Trying to make a long story shorter, there is some new iv treatment that is being used to dissolve necrotic tissue, however it has not been used in a patient with a brain problem. So doctors across the country have conferred with one another and have decided she is indeed a good candidate for this iv therapy (which turns out to be a chemo therapy--am sorry do not remember name of the drug but starts with an "A")They sought and gained approval for compassionate use of the drug however Medicare/Medicaid refuses to pay for this. They tell my daughter the only other option is to have brain surgery where I assume they will pick out the dead tissue.
We have just been through the mill and back throughout this whole ordeal as this avm caused my daughter great mental problems which we only recently found out were totally misdiagnosed--they had told us she was major manic bipolar when in fact she has some type personality disorder which is directly associated with her brain avm and its location. It seems all of the medications they have had my daughter on and I mean there have been many so many I cannot name them all--ALL of the medications they had her on were only aggravating the problem. She had many long lasting grand mal seizures and we have now been told besides the location of the avm being reason for the seizures that some of the medications they had her on actually brought on these seizure. She is very lucky to even be alive after some of these seizures as the last one she had honestly lasted from 5pm-2am--yes for hours not minutes and they say those who have long seizures usually die within a month after but this has now been over a yr ago!
I do not even know if I have posted in the correct area as I am not used to using this site, so plz forgive me if I have not posted correctly.
I would love to hear from others who have possibly had or are about to have this iv treatment and also how to force the insurance to cover as daughter is beyond scared to death of brain surgery and it scares me too!
Also if anyone happens to know of another method to remove the dead tissue I would welcome hearing about this as well.
There is literally only one doctor in our State of Oklahoma who even performs Gamma Knife and she is at odds with my daughters regular doctors for this as she says they have no clue what they are dealing with.
We feel as is we are being bounced around like a basketball with no definitive clear answers--it will seem we have gotten a clear answer only for another doctor to tell us the opposite. So...since I know many of you have been through all of this I come to you seeking guidance.
Thank you so very much for reading my post--again am sorry it is long and rambling but I am just so frustrated I've bout lost my own mind!
Very Kindest Regards and Prayers for Everyone going through these battles!
Cindi
Cindi, if you repost this as a separate discussion, I will share it with all of the members, so you can get the most feedback. I hope our members can help you along to a solution.
I am so sorry but I am like completely lost on this site. Could you direct me where to go in order to repost this?
Thank you so very much!
Kindest Regards,
Cindi
No problem. At the top of the page are a bunch of tabs (clickable links). Click "Discussions," which takes you to another page. Then click the "+Add" button.