My daughter had a Cushings pituitary tumour removed in October 2013. She unfortunately had many things go wrong after surgery to remove the tumour: a CSF leak, (for which she had another op one week after first surgery) meningitis, pneumonia and diabetes insipidus, which she still has. She has been given desmopressin to treat the ongoing DI of 3 x 100mg per day. She is still on hydrocortisone of 15. 10. 5 per day. She is on codeine and paracetamol 3 times days as she has continuous pain in her joints. She has dry eyes, dry mouth, severe headaches and weakness. She is always exhausted and any amount of sleep isn't isn't helping. Next appointment with the endo is end of March, but I fear she may have something very wrong. GP no help at all. Blood tests are supposedly ok. Is she in any danger? Also her veins collapsed whilst in hospital so she had a line fitted into the external jugular. She recently had a blood clot at the site of the canulation for which she had Clexane injections daily for 3 months.
The surgeon who removed tumour says Cushings is cured. MRI showed no remaining tumour.
Her daily health is varying degrees of poor. She is weak, and in bed most of the time. She uses a rolater (walker) when she moves around. Her legs feel like they cannot support her. She is having migraine type headaches almost every day. She is eating as healthily as she can. She has lost 30 lbs since the surgery, but I know the weight loss is down to the Cushings being cured.
She still has nasal blockage, and has taken Sudafed decongestant to ease that. Her head feels full of cotton wool.
She has trouble sleeping, and thinks the 'tired but wired' thing is down to her hydrocortisone medication - but if she lowers the hydrocortisone meds she has even less strength and feels she is going to pass out. no matter how much sleep she gets she is exhausted.
The last suppression test was in January, and it showed she is not producing her own cortisol at present.
Due to her dry eyes and mouth I was concerned that the desmopressin doseage may need re-evaluation - currently 3 x 100mcg tabs daily.
The hospital did say it could take up to a year before she had a recovery but its been 5 months and she is no better than a month after surgery. Is this normal? Other people have said they returned to work in that time, my daughter can do nothing.
thanks for your time
The surgeon was happy that the op went well.
She has been under the supervision of an endochrynologist who has had bloods checked and says they are within acceptable limits. That is all, he hasn't commented on any of her ongoing symptoms or offered further advice. She is seeing another endo at the end of March. She has had no opinions offered regarding her current conditions other than by her GP who thinks it could be anxiety.
I know its difficult giving an opinion at this distance. Just hoped that if you had experienced patients recovering from this kind of surgery you may be able to give some idea if her current state is 'normal' after Cushings.
We have asked for this to be tested but they didn't feel this was necessary.
I will push for this to be checked at our next visit. She does have mood and anxiety issues, but that isn't surprising in view of her poor health both pre and post op.
Her periods have only just started again after a 10 month absence.
Thank you for your help