Cushings Disease patient-Advice needed...

[member_38995]

Hi my name is Maria ghaly and I have pituitary Cushings disease with very high cortosol level. The MRI scan showed a 4mm left sided pituitary lesion microadenoma. On the 10.8.06 I had transsphenoidal surgery but I was unfortunately not cured of Cushings disease and the post op cortisols remained elevated. It is six years on since my operation and I am still taking Metyrapone 500mg daily. I have suffered severe anxiety and moderate depression. I feel that my life is non existent having become severely agoraphobic in not being able to leave the home because of my medical and anxiety condition. I used to be very outgoing and full of life as a pose to my current state which leaves me with no energy and unable to do simple tasks as time. I do not socialise and have not had a holiday in 10 years. I have also gained 4 stone in weight. As a result of the high cortisols I have a high B.P, gained weight, palpitations and I am very tired of this all. My endocrinologist has suggested that I have Radiotherapy and does not advise me to do a second surgery as he says that it is only a 40% chance success rate. I am very confused as to what I can do as I have seen a Neurosurgeon for a second opinion and he said that the problem is on the right hand side of the pituitary when the 1st surgeon said that it was on the left hand side. I would like to hear from anyone that can give advice on the above including patients that have had failed first surgeries or experienced patients that have had radiotherapy Gamma Knife treatment, Stereotactic radio surgery and also patients that have had Bilateral Adrenalectomy. Please contact me or respond to this post if you have experience in any of the above as I would very much like to hear from you. I would also be very appreciative to anyone attending the Pituitary Foundation meeting that would be able to come to my home as I need a lot of support and to build my confidence as I suffer from anxiety depression and agoraphobia that I am unable to leave the house and to live an ordinary life. This help would be a crucial part of coming to a decision on my next steps in my attempt for recovery.

Thank you very much for reading and I look forward to hearing from you all!

Maria

[plum]

Hi MAria

It sounds as though you need to find someone that you can trust to give you the correct medical opinion. Does your endocrinologist have time to look at the scan with you and explain what you need to know? Or do you get on with and trust your GP? If so then maybe you could ask your GP to look at the scans - at least to see if the thing is on the RHS or the LHS. I got my scans on a CD from the hospital. I don't know if all hospitals do this - I spoke to the people at PALS and they told me that it was possible. I had to pay for it.

I don't have a cushings tumour but transphenoidal surgery did not remove all of my tumour and they suggested radiotherapy. i was EXTREMELY frightened of that idea and the endocrinologist was unable to talk to me properly about it becasue i was so upset. But eventually, over the months he kept saying that it was necessary and then he reminded me that I still had 'active disease'. I have had sterotactic radiotherapy. I had cyberknife, not gamma knife, but I think that depends on the size and location of the tumour as well as what treatment is available. the radiotherapy did not hurt at all and it did not provide instant improvement. but they said that i will get better over time. I trust the endocrinologist and in the end I did it becasue it was what he suggested and becasue he was able to explain why he suggested it.

good luck. these pituitary conditions are horrible aren't they? especially since there is nothing really to SEE and the symptoms are all so changeable and un predictable.

plum

[member_38995]

Hi Plum,

Thank you for your kind response. Time has been given to looking at scans however everyone has a different angle or opinion so it is hard to decide and that's why hearing from other patients with similar conditions is very helpful as every little helps in making a decision on the next course of action. It was great to hear from you and I hope to hear from more patients to see what their views are also as it can be productive for us all. I agree these symptoms are very hard and I am at a point where I have to decide what the next step will be as I cannot stay like this.

I wish you all the best and thank you for your input,

Maria