1. Community
  2. Diabetes and hormone problems
  3. Adrenal Disorders

Pheochromocytoma life after my op

Posted , 2 users are following.

Guest
Guest

i had my pheo removed November 2006, i had to have 4 pints of blood the day before my op, the actual operation was just over two hours, they first thought that i may have to have both adrenal glands removed as it looked that way from the scan images When they actually removed the tumor it was 20cm long but only on one gland. I was in intensive care for 24 hours then back in a normal ward. i had drips in my neck my arms and wrists and i had bruises like ive never seen before, all in all i was in hospital 7 days. then rested at home for a further 7. i cant believe that after all those awful symptons that i suffered from just went away, my partner actaully said that i had some colour back in my face and that was when i just came round from my op.

I had great pleasure in telling the doctor that i did have infact pheo after he told me i was being ridiculous. Its now the begining of May all in all im 98% i get very tired quickly, my scar is still slighty sore its 23cm long and at first i hated anything touching my scar it which is awkward when your dressed, but its a neat scar although long, and i wouldnt have a problem putting on a bikini whilst on holiday. I have not had a headache since my op and have put weight back on and im back to my noraml 8st instead of the very underweight 6 and a half stone i was.

I was treated very well in hospital the staff were wonderful my surgeon was fantastic, the worse thing was the epidural, although better than normal anaesthetic, i really didnt like the having no feeling in my legs they felt very heavy and i couldnt even move my toes, but it only lasted for 3 days and its a small price to pay being that its a serious condition, and luckily it was not maglingant. I did suffer a bit with pains in my back which were down to the fact that they had to move my right kidney out the way to get to the tumour, and whilst i was in hospital i had a few student doctors coming to see me regarding my condition and a ouple of them actually went into the operating theatre as thy may never get a chance o seeing another one.

I do how ever have tumors on my left kidney which are best left alone but they are being monitored for any changes and they would of not found these tumours had it not been for my pheo.

Anyone having any of the awful symptons and your doctor just trying to brush it aside ask for a blood test and the 24 hour urine test, better it came back negative, than leave it until something serious happens like a heart attack or stroke.

1 like, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    im so pleased i found this site and was able to read jennifers experience before i went into hospital to have the same operation. my tumour was huge too the size of a rugby ball the surgeon hadnt seen one this size before. i too had to have blood transfusions during the surgery and then had to be opened up a few days later to take out the packing which stopped the bleeding i had from the tumour.

    ive been home for a week now and would like to know from jennifer or anyone how long will i get the back pain where the gland was removed. roll on recovery.

  • Guest
    Guest

    Posted

    Hi Heather & Jennifer, I would like to ask both of you, if you don't mind, what tests did you have to find the Pheo? If you had blood or urine tests, do you know what type of tests they were? Also did you have any scans done, and what symptoms did you suffer from? I have been tested 4 times for a Pheo, but they came back normal. I am still suffering from the symptoms.

    There is an accurate test carried out in the USA, called the Plasma Free Metanephrines but it is not available in this country. The next best test is the Urinary Fractionated Metanephrines, but I don't know if this one is done in the UK either.

    Best wishes to you both for the future.

  • Guest
    Guest

    Posted

    hi there ive just looked up Patient experience today and see you might be having similar problems. I had an ultrasound which first showed a mass on my kidney, followed by a ct scan and then a mri scan which clearly showed the tumour was attached to my adrenal gland. After seeing the surgeon i had to do 24 hour daily urine collection for 4 days. I infact didnot have a pheo but if you have that part of your adrenal gland affected you would be extremely ill.

    My symptons started a year before with feeling sick in the evening and not being able to eat meals. All i wanted was fruit. this year i started being sick in the mornings and then i had acid at night. my blood tests showed nothing was wrong but i was clearly losing weight. The nausea would come and go. Then i insisted i saw someone as i though it must be a stomach ulcer and thats when they did all the tests.

    Ive just had the good news that my tumour was benign but i urge anyone out there dont ignore any unfamiliar symptons because this thing grew rapidly and i didnt have keyhole surgery after all. im so much better now and enjoyed xmas lunch so much thank god the sickness feelings gone.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.