now my wife developed edema in her brain where the surrounding veins are shrinking causing leakage of fluid in her brain. This causes paralyzes in her right hand where she can not write. She is now on large doses of steroids. Not good for long period of time. Doctors really don't know what is best but this one they want to do first. Hopefully, they can reverse the leakage and return back to normal.
This was due to a Gamma Knife treatment so close to her motor function area.
I'm sorry to hear about your wife's complications from gamma, Andy. I hope she feels better soon. You may wish to post on the radiosurgery group also to see if others have suggestions.
Thank you and I did post this on the group you mentioned.strength and hope for all.
Hello, I'm sorry to hear about your wife. Also reading your story got me thinking. My DR. was not able to do embo due to the risk of damaging other veins. No craniotomy due to the proximity to my motor function area. NOW :( on Wednesday I'm going to radio-surgery (LINAC) and don't know what to expect. Feeling scared...
Oh Andy Lee…I am sorry. I will be praying for the both of you!
My wife has hers near her motor functions too. That's why they did not remove it. GK treatment and now edema from the deterioration of the cells surrounding the AVM. Her AVM has shrunk about 45 -50% in two years but have to put up with the lessen of AVM and the results of it. Our doctor did an embo and glued it shut. Her AVM was 4 cc. Good luck on your procedure. Lifes a bitch.
Feeling scared is normal. You'll do ok.
You might want to ask your neuro team about hyperbaric oxygen therapy. It’s a huge time commitment and expensive but its the gold standard for healing up radiation necrosis and edema. My brain swelling ended up turning into a spectacular case of radiation necrosis. Hyperbaric oxygen therapy helped me a lot, healing up a lot of the necrosis (my right side was getting progressively more paralyzed plus some scary cognitive problems). It also worked way better for me than steroids for getting rid of the swelling. The radiation oncologist who did the gamma knife surgery prescribed it. My neurosurgeon seemed less tuned in to how to treat radiation injury. So you may want to check in with the neurosurgery radiation oncologist who did the gamma knife as well as your neurosurgeon if they are not the same person. Best of luck, brain swelling is a new species of hell as far as I’m concerned…
Jessica, thank you for that suggestion. Our neurologist mentioned about the oxygen and our oncologist states he did not think it would help. The opposite of what your doctor stated.
We will advised the doctors what we want. That was a great advise to us. Thanks again.
Did your paralyzes reverse after the sweeling went down? And if so how much?
Thank you Barbara, we need it too. We did not think of the side effects later. Last April we knew about the edema but the said they did not want to address it then until it got worse. Can't figure that one out. Does not sound logical.
Hi Andy, I posted a reply in radiosurgery group but noticed your discussion here as well. I'm nearly 2 years post GK as well and have had several episodes of brain edema over this period - one of them was a major one where my right hand was gone very weak(can't call it paralysis as I had about 20-30% strength in it) but thanks to large and continued dose of steroids for months I'm doing fine now(and back to work as well). At one point they did taper me off fully from steroids and let my body take over the function when MRI results were showing good signs. I have to say my medical team was very diligent and I have had frequent MRI's (every 6 weeks) and that helped adjusting the steroid dosage as I was having a lot of side effects of that. Patience is the key and I used to get irritated as well but I learned it with my experience over the previous number of months. I just had another MRI a week ago and although formal report still has to come out, looking at images I can say that I now have nearly NO swelling.
I pray and wish your wife will come out of this 'mess' soon, Good luck to you and your wife.
KY, that was a huge help to us to relax a bit from steroids and hope in the near future.You are describing the exact symptoms and problems my wife has. How long were you on steroids until you felt a difference and did your arm come back without therapy? You did not have any problems with your elevated blood sugar while you were home?
Thanks again for your reply,it really gave us hope.
I was on steroids for about 2-3 weeks when i started to feel a little difference with a lot of physio as well. It took me nearly 2 months of steroid dose to regain 60-70% strength…blood sugar did create an alarm for me but it was marginally high so my GP just kept a close eye on it and it settled down when i tapered off. Steroids are life savers but they come with a lot of side effects unfortunately…im glad that you got some positivity by seeing my reply…Let me know if i can be of any more help.
Hi Ky, ,you mentioned the Physio, are you referring anxieties? What type of side effects dso you mean? We are very grateful for your experiences that help us a lot in relieving our anxieties. She is feeling a warm blood flow back into her rt hand and that might be a good sign.
Andy and Mabel
I meant physiotherapy Andy for getting strength back in my hand. I have had multiple sessions when I was in hospital and they advised some simple hand exercises for home too...there are other interesting things as well which can help like play doh, moving cards from one pile to another pile, connect 4 etc.
Everyone reacts to steroids differently so Mabel may not necesarily go through the ones which I have gone through but muscle weakness is the biggest side effect which I felt, others were quite mangeable. It took some time to regain all the strength back in muscles (about 8-10 weeks). I blew up like a balloon in no time even when I was eating sensibly! Having some feeling in her rt hand is positive, how long is she on steroids? When is her next follow-up MRI? Keep us posted Andy. Good Luck.
She has been on steroids since Sept 13 and has about nine more days on a decreasing regiment. Oct 1, will be our followup but they said no MRI. I thought why not but the said too much radiation. How else can they tell how much of the edema is gone. I will ask.
So are you back to what your normal self now?
I will keep you informed. Thanks for the help.
In my limited knowledge MRI is not harmful but CT’s definately are…so i suggest u find out abt it. frequent MRI doesnt show much diff anyway. My doc says 6-8 weeks is minimum you hv to give to see the diff but u’ll start noticing the diff urself if edemais coming down in terms of the strength in hand…im back to normal but suffer frm fatigue and headaches…my 2yr annv of GK is approachin as well so hv to followup now for next steps…hope Mabel gets some strength in her arm by nxt appt. Keep us posted
Are you back to work? If you are working. I read your message to my wife who has the same situation as you do and rely on your every read. I tell her to be positive and be strong. It only has been 2.5 weeks. She is worried that she won't be able to work from being sleepy and her hand being weak. Thanks for your kind wishes, same to you too.
Hi Ky, do you have or ever have tingling in your arm or hand? Wondering because Mabel has had tingling and numbness from the hand up to her head. Now she has tingling in her right hand but not up the arm. We are trying to analyzing the hopefully progress of getting better. Every kind of changes for the better makes her feel better.
Thanks
I did hv tingling in my hands but that was possibly due to antiseizure+antimigrane medicine i hv been put on called topamax…i had just started this medication at the time and one of the very known side effects of that medicine is tingling in arms &legs…
Yes, im back to work after a good long break of almost 8-9 months(i pushed it for very long just to make sure that i dont return sick again)…but i hope and wish Mabel can return to work much sooner.
Thanks, Mabel has had tingling in her hands and arms up to her head right side ever since her GK. I will check the side effects on her meds. of Vimpat and Keppra. Thanks you for lettings us pick your brain for your experiences.
So far it has been about two weeks now and no results.
Have a great day in Dublin.
Andy