Does anyone have any experiences, advice or knowledge on Phaeochromocytomas? I recently underwent a spontaneous Total Colectomy, removal of large bowel and appendix after an admission to hospital with 'tummy ache' !!
Massive shock ! Very ill and over 2 months in hospital.....( still not recovered 5 months on ) but...while scanning my tummy, they found this Adrenal tumour and boy is it wrecking my life !
It raises my BP to ridiculous levels, without warning and I can just drop to the floor. And now theyve medicated this my BP can fall into my boots and again, I just drop. I have headaches, bad ones, Palpitations, I sweat, whatever the weather, I go a pale creamy colour, shake, tremours, feel sick and vommit...and this is all the time..
I am earmarked for surgery, when they can calm the BP and heart racing down a bit. Its an 8cm tumour so possibly their for some time. ( Tummys so badly cut up from surgery, the promised 'keyhole' is out of the window now)
I have never in my life been so frightened ... never. I have been thinking the worst things. I have 2 sons and I darent talk to them about it. I have never felt so unwell, with the Ileostomoy included. I cant walk far, cannot stand, Im constantly exhausted. Can anyone please share if they have any experience of a Phaeochromocytoma. Its a very rare tumour and therefore, hard to find life experiences about.