The neurologist has very particular that Deepa needed steroids prior to the operation as her myasthenia gravis had to be brought under control .The surgeon didnt particularly think so but said he would go by the Neurologist’s view .We were advised by the Neurologist to meet Dr GK Ahuja who was quite categorical that steroids would not be needed and that we could go ahead with the operation .He even spoke to the Neurologist and conveyed this opinion but the Neurologist was quite firm on the need for steroids and the need to be hospitalised from the 5th day onwards to take care of any crisis that may arise .
Deepa was put on 50mg of steroids daily and thankfully went through the pre operative phase very well with the myasthenia gravis brought completely under control .She even went through the operation and post operative phase very well and was well on the road to recovery .Her myasthenia gravis was fully under control and the Neurologist weaned her away from the mestinon tablets .However he kept her on the steroids on the original dose of 50 mg per day .He said she would need this for approx 3 months and wiould then be weaned off it .Every thing was going well till she suddenly started showing signs of dis-orientedness.We first noticed on the 2nd May that she was saying things that didnt seem factual i.e. she told our daughter Seema over the phone that her sisters ,who had come visiting to Delhi , had gone out to get some things for the house .They actually hadnt .She also told her that the landline was ringing and she would call her back .The land line wasnt ringing and when she attempted to call back , she rang her neice instead and checked for her daughter .She also started showing signs of tiredness and worry .
She rang up the Neurologist and was asked to get a blood test done and what she concluded was an appointment to meet him next morning at 9.00am .We went to Apollo Hospital only to realise that he had not given us any time for the morning .We however refixed for the evening and returned later in the day .As we waited Deepa went to the loo and didnt return for quite awhile .Luckily Seema was with me so I sent her to check what was up .She had left the loo and wandered off some where else and we started frantically searching for her.We found her waiting lost and disoriented outside Dr Banu’s room !!
The Neurologist checked her and concluded that it was a reaction to steroids and commenced a weaning down programme.He said to see him again after a few days and if the condition continued she would need to be admitted into the hospital again for detailed tests .Her condition continued to remain dis-oriented and on the advise of the doctor she was rushed to the hospital to be readmitted for tests and placed in the ICU as no beds were available and the Neurologist felt she will get better supervision at the ICU and fasted access to tests , MRI et al .
Her days at the ICU were terrible for her .She kicked up quite a row and was placed on anti psychosis drugs to keep her quite .She displayed signs of hallucinations and dilugions , said one of the doctors was a murderer and felt several of the staff where up to no good .Had a lot of blame to place on the Neurologist’s shoulders and later told me she had flattened him with her accusations !! She cried with joy when we went to escort her out of the ICU into a room of her own and in a few days she got discharged and got back to Sheik Sarai .
Unfortunately the side effects of the steroids as displayed through behaviour completely contrary to her usual self continued .She was weaned down to 10 mg of steroids per day and 25mg of an anti psychosis drug every day and has been on this for the last 7 days but the side effects continue .She now displays aggresssive behaviour from time to time and seems ultra sensitive to sounds , light and even has a more sensitive palate .At time she demands things like a little child and would through tantrums .At time she would be remorseful and weep like a child .
We are off to see the Neurologist today and hope to get him to agree to weaned her completely off the steroids .Let’s see what he says .The last thing we want is another round of costly investigations.
There’s more to share , which I will do in the next update .