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  • has anyone ever had surgery to remove a pheochromocytoma?

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    Old 11-06-2008, 03:02 PM   #1
    nfwren
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    has anyone ever had surgery to remove a pheochromocytoma?

    We are in the final testing stage for a pheo, both my PCP and specialist agree on the diagnosis they are just double checking I guess. I am very concerned because both of them have told me that the surgery is VERY risky for me however ignoring the tumor is even riskier. This is all very new and scary for me because I am used my husband having health problems and multiple surgeries of his foot due to diabetes. I have always been the one with no health issues.

     
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    Old 11-06-2008, 11:23 PM   #2
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Did they find the tumor or are they just looking at your catecholamine levels?

    There was a poster on here a few months ago who's doctors were convinced she had pheochromocytoma but could not find a tumor (iirc). I suggested that she look up hyperadrenic POTS. This was eventually what she was diagnosed with.

    Please have them consider this option, it's no more rare than pheochromocytoma - probably more common. If they haven't found a tumor you likely don't want them doing exploratory surgery unless other possibilities are ruled out. With hyperadrenic POTS there is elevated catecholamines, especially when upright.

    Last edited by aether4; 11-06-2008 at 11:24 PM.

     
    Old 11-10-2008, 02:19 PM   #3
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    They are in the testing process now. Last week we did an MRI and serum catecholamine tests. Hopefully we will know more in a few days. If they do not find a tumor I will bbring up the other possibility to my PCP and the urologist that is dealing with the case. Thanks so much for letting me know there is another possible diagnosis.
    Wren

     
    Old 11-13-2008, 06:54 PM   #4
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Yes, I had a lemon size pheochromocytoma removed last April 14, 2008. It was on my right adrenal gland, which was also removed. I have a 7" scar in my abdomen area. It had to be removed this way because of the size.

    I got along beautifully, and was only in the hospital 4 days and probably could have gone home in 3 days. I had very little pain.

    I thank the good Lord everyday for such a successful surgery and recovery.

    I am doing great with no problems.

    MattieMae

     
    Old 01-15-2009, 04:27 AM   #5
    The Pheonix
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Is there anyone with Pheochromocytoma outside of the adrenal glands? Right adrenal gland was removed in 1994, but now it is back. This time in the bones.
    Any info out there?

     
    Old 01-16-2009, 03:02 PM   #6
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    I'm actually waiting on results from my 24 hour urine collection and blood work to see if i have pheochromocytoma. Thing is, i told my neprologist that i have social anxiety, and told him my symptoms, and he said those are the exact symptoms of pheochromocytoma. My first urine test i took showed i had a high level of Meteanephrines. BUT, i told him i think it was cause of anxiety and my body being in the fight or flight mode.

    It's been 3 weeks and he still hasn't called with the results. Whats weird though is i got that old urine work done when they found that high level, and after that have had a renal sonogram and my cardiologist said my kidneys looked beautiful and their were no problems. I told my neprho about that and he said renal songoram wouldn't show pheochromocytoma, and that a CT scan is needed. But that doesn't make any sense, since tumors are able to be seen during sonograms i thought? They found a polyp when i recently had a abdominal ultrasound done, so why wouldn't they see pheochromocytoma?

    I just don't think i had pheochromocytoma all my life, since i have these anxiety symptoms that long.

    Last edited by Lourage; 01-16-2009 at 03:03 PM.

     
    Old 01-16-2009, 03:19 PM   #7
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    My blood pressure was extremely high and my doctor had a renal sonogram taken, and the lemon size pheo showed up. Then the next day he had a cat scan taken and it showed up there also. So, a pheo can be seen on a renal sonogram.

    MattieMae

     
    Old 01-16-2009, 03:26 PM   #8
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Damn! so what is he talking about then? Does he just want me to get the tests done for the heck of it? or maybe he thinks it can be elsewhere besides the kidneys? but then the whole abdominal sonogram i had done would have picked it up also you'd think.

     
    Old 01-16-2009, 03:37 PM   #9
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    I did not have an abdominal sonogram. I was on each side for the renal sonogram.
    They ran the sonogram on my kidney area.

    MattieMae

     
    Old 01-18-2009, 11:40 AM   #10
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Well you may need a PET Scan. It may not be in your adrenal glands. It may just show up as cells somewhere else. I am hoping to find someone with it in their bones and find out what they are having for treatments to compare notes. Chemo, Radiation, Prescriptions???

     
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    Old 01-18-2009, 02:24 PM   #11
    Lourage
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Wha! what is a PET scan? My doc didn't tell me about that. So great, if they do a CT scan and find nothing, but my urine test comes back abnormal, they are going to still want to look else where What is a PET scan though? Is it a tunnel like a MRI?

    Did you also have anxiety and thought thats what it was? cause they tell me the anxiety symptoms are exactly like pheochromocytoma. Makes no sense to me though! Telling me that this 'tumor" is making me afraid to go outside and talk in social situations and i've had it for like 15 years and it did no damage by now?

    Last edited by Lourage; 01-18-2009 at 02:29 PM.

     
    Old 01-18-2009, 02:30 PM   #12
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Also would i have gotten a call by now? is it a urgent matter? i got the blood/urine done 3 weeks ago and still no call back. if it came back bad wouldn't they have called by now?

     
    Old 01-21-2009, 04:21 PM   #13
    Lourage
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    They have some nerve! They call me up today to leave a message REMINDING me of my appointment on Monday, yet they didn't mention my test results. yet i filled out a form saying they can call my number and leave any test results. Know why they probably didn't? cause they probably figure if i get the results over the phone, i will cancel my appointment!

    Think thats true, or i'm looking too much into it? Made me so mad! I figured " cool, they called about my results" They have a number to call and leave a message about test results, but last time i called that about a problem they didn't call back for like 4 days! So if i even call tomorrow i probably wouldn't hear from them until Monday anyways.

    Last edited by Lourage; 01-21-2009 at 04:22 PM.

     
    Old 01-21-2009, 07:18 PM   #14
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Concerning your post of Jan. 18. I did not have anxiety. My symptoms were high blood pressure, high glucose (my doctor had me on diabetes pills for 2-l/2 years) and when I worked outside in my flower garden, I would have to stop and rest and catch my breath for about 10 minutes.

    Now my glucose is normal, my blood pressure fairly normal and I can work in my flower garden until I am ready to stop!

    Good luck on your doctor visit Monday. Keep us posted.

    MattieMae

    Last edited by MattieMae; 01-21-2009 at 07:19 PM. Reason: spelling

     
    Old 01-26-2009, 03:30 PM   #15
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    Re: has anyone ever had surgery to remove a pheochromocytoma?

    Just got back from the neprho, and all my tests cam back fine lol. No Pheo's for me! also told me to stop taking my BP and stop worrying about it. I got them to change my metoprolol to Propranolol though! after telling them it should help me more with the hot flashes. They gave me 80 mg pills and told me to split them and take 40 in morning and 40 at night. So that should hopefully be equivalent to the 50 mg of metoprolol i was taking so i shouldn't have withdrawals right?

    Last edited by Lourage; 01-26-2009 at 03:30 PM.

     
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