Adrenal Gland

After month of testing and going the Cleveland clinic they have found out what coming on. I have a small NF lesion on my adrenal glad that needs (going) to be remove It could be the cause of my high Blood pressure . Has any one else have this trying very hard not to scared . This is the first time in years that I had any trouble

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I have heard of this happening but have not experinced it my self. My thoughts and prayers are with you; I have NF and high blood pressure so i will have to ask my neurologist about this.

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thanks

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Is what you have a Pheochromocytoma? I had one that was found and removed in 2008, although it didn't ever cause any high bp with me. If what you have is a Pheochromocytoma, those nasty little things cause a lot of feelings of uncertainty, very jumpy, sometimes, a sense of doom. Once that nasty little thing is out of you, you will feel so much better (I idid)! If it's not a pheo.... I don't know what to say!
Hope you feel better soon!!

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Sounds like a Pheo.... I've had one...once it's removed all returns to normal. You may have to go on beta blockers to help reduce your heart rate for a couple of weeks before surgery.
Sunchaser has described some of it's other symptoms...I also lost a lot of weight if I didn't *over eat*.

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My son had a lemon sized tumor on his adrenal gland also. HIs blood pressure wo0uld go up high, his temper would rage out of control. Thr tumor was removed his b/p went down andhis temper and rage went away. Unfortunately his brain tumors and his seizuers killed him.

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How were the tumors found on your adrenal glands?

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It all started with having virago my doctor a Cleveland Clinic doctor sent me to the main Clinic and having a MRI and scans they found this pea size tumor on the glans

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Wow! Can I ask what symptoms you've had? The reason I ask is because I have instances of rapid heart rate, up to 170 and lasting 2 hours, but it has not happened for a couple weeks. They've ruled out thyroid, and I know I have a small cyst on my kidney which they say is not NF, but I don't know, because I have all NF elsewhere. NF seems like it brings on a ton of crap!

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Sure sounds like a pheochromocytoma to me. I had one about 25 years ago, when I was pregnant with my son, so they couldn't do anything about it right away. Actually, that is how they found it, because they take your blood pressure like every 5 minutes when you're pregnant. I was about 25 weeks along, so they had to wait. Anyway, it gives you high blood pressure, makes you crazy, races your heart, can give you headaches, lots of energy, and basically increases your adrenelin levels up to crazy levels - kind of a constant fight or flight mode and turned me into a crazy person. They put me on inderal and dibenzalene (sp), took my son a month early and removed the pheo which by then had gotten pretty big. But, once it was out, after a few days, my bp was back to normal and I've been fine ever since. They're doing lots of research on NF and pheos, which is one of the oh so many complications we lucky people with NF get. Great catch by your doctors, a lot of them miss it. Anyone with high blood pressure needs to check this out as a possible cause. My ob-gyn caught it because he remebered being at a conference years before and hearing that there was a higher incidence of pheo and NF and a brilliant resident tested me for everything.

Good luck with your surgery - Feel better

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Now the funny thing is I feel fine Yes I have High BP but it's in the family, and I'm the only NFer in the whole family Yes I have anxiety . All due to this!! Go figure :0) Thank you for all your support Still worried about the money since I have only 80/20 But I believe with good Lord behind me all will be ok

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Yes it Pheoochromoctom .Now another question the good doctor said look at about two-three weeks for a totally recover time
I have 6 weeks of sick time in the"Bank" at work with about three weeks of vacation time left Just got off the Phone with my older brother (know it all) telling me I shouldn't take that much time. I told him if my job was a sitting down job as his is it wouldn't matter But I'm a child care worker who is is up and down all day. So my question for those who have been through this and so I can tell him how long is the recovery

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Just popping this up to ask more questions. Surgery will be two weeks from yesterday. A little nerves,but not scared just want it over. Had the pretesting all ready but forgot to how long the surgery is. (any one know) Did ask, THREE WEEKS OFF REALLY ?
More worried about my preschool class, i want them to keep up with what I planed and left them to do. It will be a over night stay Making sure one of my sibling and take off a a hour to get me ,have friends that could do it but it should be family I think I would do it for them. I also believe I'm over thinking and driving myself crazy LOL

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Hi

I had both of mine removed at Different times about 10 years apart. Don't worry

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Hi Cathapath,

How did your pheo removal go?

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