Ruling out Pheochromocytoma

This section is for discussions with other women who have probably been through the same signs/symptoms that you may be experiencing. Please note, we cannot offer medical advice and encourage members to discuss their concerns with their doctors. New members, come on in and introduce yourself!
beth0277
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Re : Ruling out Pheochromocytoma

Postby beth0277 » Wed Sep 22, 2010 08:51 am

Chelsea, so glad you got information from someone who knows a lot about what you are going through! Please let us know how the MRI goes!

ch3lsea
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Re : Ruling out Pheochromocytoma

Postby ch3lsea » Wed Sep 22, 2010 00:49 am

Thanks for all the info! It's good to hear about it from someone who actually went through it! I will be making my MRI appointment tomorrow, so I guess I'll have to wait and see what happens. Thanks again!

jfindley
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Re : Ruling out Pheochromocytoma

Postby jfindley » Tue Sep 21, 2010 11:58 pm

Hey Chelsea,
The surgery is a little intense. I don't want to scare you. I know you are going through a lot with a little peanut in the nicu. But it is a little risky and it is very important to find the right surgeon. Definitely find out how many he has performed. I made it through just fine with no complications. I spent time in the ICU recovering (Luckily I was in the same hosital as the NICU so I was able to visit him). In order to have the surgery, they do have to start you on the one med I mentioned, Dibenzyline, for a few 2-4 weeks before surgery and then just a few days of another one. The meds are supposed to "deactivate"the tumor so it doesn't cause a hypertensice crisis during the surgery. (having the cesarean with the tumor so close by was very dangerous also and I did end up having a near seizure from the tumor releasing adrenaline).

My surgery ended up being laproscopic, so very few scars, but I think if you read the research, that is a kind of new approach instead of doing a large incision, so again, having a good surgeon is key. I think the surgery lasted 5-6 hours and because so few docs have done them, there were a lot of other docs scrubbed in and observing, so I had plenty of hands on deck in case of an emergency.

Good news is that they are almost always non-cancerous and once they are gone, all symptoms are gone too. Certainly gives us a better chance of having a more long term pregnancy next time.


jfindley
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Re : Ruling out Pheochromocytoma

Postby jfindley » Tue Sep 21, 2010 11:41 pm

Oh Chelsea. I just read your other posts about your 26weeker in the NICU. My heart goes out to you both. She sounds like a fighter. My guy also had a close call with NEC. I know what you are going through and I am so sorry this terrible disease has put you in this situation.

I know they had me on some special BP meds after they found the pheo tumor, not the typical ones. I think that one was called Dibenzyline and previously to the discovery of the pheo, I was also on labetelol, nifedipine, methyldopa and atenelol. Usually when a patient is on3 or more BP meds and the BP still doesn't go down, they start to suspect pheo. They can do two tests for pheo- a blood metanephrines test and a 24 urine for catecholimine levels. Have you had the blood test yet? My BP became very elevated around 16 weeks, so they were calling me a chronic hypertensive, but before pregnancy it was only high during high stress times in my life. Now the docs say that pregnancy can activate an otherwise mostly dormant pheo. Now that it is gone, about half my docs say all my HELLP was due to the pheo and the other half still say I have a 60% chance of getting Pre-e again.

I understand what you said about wanting to know a reason for your HELLP and PE. i was also very torn with emotions of relief to have an answer and OMG I have a rare and dangerous tumor. Facing a major surgery with a baby in the NICU was really tough, but I had a great surgeon who had done quite a few Pheos. I had heard it is hard to find a good surgeon with experience with this rare tumor. I wish you all the best and really hope you able to find some answers. Please feel free to contact me by email ([email protected]) if you have any questions at all. I became somewhat of an expert on the subject. most of my docs had never had a patient like me so they spent a lot of time explaining, sharing research etc. I am glad to share my experience with pheo, hellp and a 26weeker.
My son spent 3 months in the NICU and just reading your posts it reminded me of how much of a roller coaster ride it is, especially in the early days. Just take it one day at a time and soon your precious baby will be coming home to you. I always thought seeing the little preemies from our NICI bulletin board before and after pics helped give me hope for our future. Email me and I would love to share our before and afters.
Please keep us upadated. Our family will be keeping you in our prayers.

ch3lsea
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Re : Ruling out Pheochromocytoma

Postby ch3lsea » Tue Sep 21, 2010 10:30 pm

I'm on procardia and labetalol right now. Is the surgery to get it removed very invasive/complicated?? I delivered my little girl at 26 weeks too...she's almost 4 weeks and holding her own in the nicu. Glad you and your son are doing well!

jfindley
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Posts: 72
Joined: Sun Jun 21, 2009 09:02 pm

Re : Ruling out Pheochromocytoma

Postby jfindley » Tue Sep 21, 2010 10:00 pm

Hi Chelsea,

I am glad your doctor is ruling out the pheo. I had a pheo throughout my pregnancy, but we did not find out about it until it was too late and my liver shut down and baby was delivered at 26weeks(He is almost 2 now and totally healthy) due to HELLP. Found in when we did MRI of liver. I had it removed a few months after baby was born. What BP meds are you on now?

sarah0381
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Re : Ruling out Pheochromocytoma

Postby sarah0381 » Tue Sep 21, 2010 07:13 pm

I'm glad they are looking into things!!! Although you don't need anymore right now! I'm still praying for you and your family. Keep us updated!

ch3lsea
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Joined: Fri Jul 23, 2010 03:34 pm

Re : Ruling out Pheochromocytoma

Postby ch3lsea » Tue Sep 21, 2010 01:34 pm

Thanks. I'm hoping there is no tumor and we can just finally rule that out...at the same time it would be awesome to have an answer...but the thought of having to go through surgery is scary. I feel so overwhelmed, between having my daughter in the nicu and still having health problems myself, not to mention my husband is across the country right now. :( Ugh, when does it get easier for us?

beth0277
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Re : Ruling out Pheochromocytoma

Postby beth0277 » Tue Sep 21, 2010 12:53 am

Hi Chelsea,

I'm not extremely familiar with Pheochromocytoma but did a little reading and it looks like they are normally benign, which is great. I also read that treating them can effectively lower blood pressure.

I know it is scary to think that there is "something" inside of you that shouldn't be there, but it does not seem like this is cause for too much alarm at this stage. The MRI won't be too bad, just try to relax (I know, easier said than done.)

I'm sorry you're going through this! Keep us updated when you can!!

ch3lsea
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Posts: 46
Joined: Fri Jul 23, 2010 03:34 pm

Ruling out Pheochromocytoma

Postby ch3lsea » Tue Sep 21, 2010 12:49 am

My doctor wants to order an MRI on the abdomen for me to rule out Pheochromocytoma. I guess the urine test showed that it is a possibility. Anyone have any experience with this?? I'm freaked out, on one hand it would be nice to have an answer for my bp being high throughout my entire pregnancy...but this is not the answer I want =/ I'm also nervous about the MRI...I'll probably have a panic attack in that thing lol. Ughh, this is just too much to deal with


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