On Friday,21st August, we saw a neurosurgeon at Sunway and Norman was diagnosed with Steroid withdrawal syndrome. What is that? Precisely what it mean, his body is suffering because we taper off the dexamethazone a week ago! And what were the syptoms?
On Thursday evening(20th August), he could not speak at all, his right side was weak,his right face was droopy and he was not steady when he walks! He couldn't even swallow well as water and food leaks out from the right corner of his mouth.He had 2 fits on thursday night.It was all so exhausting! On Friday morning we were like zhombies! And all these happens because of the devastating effects of steroid withdrawal!
What are steroids?
Steroids are hormones produced by the adrenal glands that are used to reduce brain swelling. Steroids belong to a class of drugs called corticosteroids. The steroids used to treat brain tumors are not the same as those used by athletes. The most common steroid is Dexamethasone. Norman was given steroid to treat his brain edema.
Usually he will take it for about 2 weeks and I will taper it off very gradually, about 1 mg daily by the third week. Since his second surgery in Februay, he has been on this steroid cycle several times because the MRI scan keeps showing massive edema and now the fits keep coming back. So when will all these steroid madness ends? I dont know. The Drs are trigger happy with the steroid and we are drowning with fear from this withdrawal symptoms not to listen to them. Isn't there any other treatment? I wish I know!
For the time being, Norman's condition have improved after taking the steroid. He still could not talk in proper sentences but at least he can say something! We are praying fervently for a complete and speedy recovery.
May God bless you all.
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Dear Dorothy !
First of all I would like to express my deep sympathy ...and ask God to help you in passing this hard time.
Hoping not to mislead you , or making you change the course of treatment without cosulting an expert in endocrinology....I would like to inform you that I have been dealing with asimilar case of a Decadron withdrawal syndrome in an elderely 80 Y.O woman...since Augest 2010. Now every thing is gradually getting better...it just needs to be patient...It takes time.
May God bless You.
Sincerely
Shukri
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