Pituitary and Meningioma advice

Posted by sandysdoves @sandysdoves, Sat, Feb 9 7:23am

Three years ago I was diagnosed with a Pituitary tumor. It was discovered after my gynecologist ordered blood work. During my first visit with my Neurosurgeon he said he saw something else on my MRI but would wait until my six month MRI before we would worry about it. He asked if I had ever had any other Scans of my brain and I told him that I’d had a CAT Scan when they were checking to see if there were any signs of Cancer left from a tumor that had been removed from the base of my skull. I was able to show him the films on my IPad. He informed me that the spot was on the CAT Scan as well. Fast forward six months later. I go for my check up with the Endocrinologist and she asks why I didn’t get my MRI done. I told her I did, but I forgot to ask them to send her the results along with my Neurosurgeon. So she called and asked them to send her the report. As she’s reading the report in front of me her facial expression changes. Then she says to me has the Neurosurgeon received this yet. I said yes but my appointment isn’t until the end of the month. She proceeds to tell me I have another tumor and it needs to come out. I was beside myself with worry because she didn’t say where it was just that it was attached to my brain. I had decided to wait until my appointment since it was so close to Christmas. But later that day the Neurosurgeon office called saying they needed to change my appointment till the end of January. I asked her if there was any way to see him sooner because I just been told I had another tumor and I couldn’t wait a month to see him I’d be a wreck by then. She went in to check and just as she went in someone canceled for the next day. I get there and started getting nervous because I was in the exam room for almost an hour before he even came in. I saw his assistant and he said that the doctor was reading the MRI’s and would be right with me. All sorts of things started going through my mind. He comes in the room and tells me that he’s sorry it took so long but he wasn’t able to load both disks at the same time in order to do a side by side comparison. That what he suspected at my last appointment was confirmed. He went on to explain to me exactly what a Meningioma was, that mine was small enough that all we needed to do was watch it for now. He also said that my medication was working because the Pituitary tumor had shrunk some since my last Scan. Fast forward three years, there has been no change in the tumor it’s not growing but it’s not shrinking either. So from a size standpoint both tumors are stable. From a lab standpoint there were some issues my growth hormones have been all over the place and they were concerned that the medication was no longer working. So I had other testing done. My growth hormones are where they should be. My question is I’m having most of the symptoms that they told me to watch for. I also have a tumor on my Adrenal gland. I talked to another doctor and he said with all my other medical conditions if I was his patient he would be calling the Neurosurgeon and telling him the pituitary tumor needs to come out. Especially since I have the adrenal tumor. He believes that if the pituitary tumor is removed that some of my other issues will resolve themselves. I have also started to have issues with my heart. What I’m wondering is do I seek a second opinion. I also have cysts in my liver and kidney which right now are very small.

Liked by mrector

I'd definitely get a 2nd and a 3rd opinion! Most surgeons say it's easier to remove a tumor when it's small…not set around and watch it grow!!!!!

Liked by mrector

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@sandysdoves, have to agree with @bjh369. You would be wise to get a second opinion. Mayo Clinic were able to demonstrate the value of second opinions. You may be interested in reading this:
– Mayo Clinic researchers demonstrate value of second opinions https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

If Mayo Clinic is an option for you, you may wish to consider the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your treatment options and answer your questions. Be sure to mention the Brain Tumor 48-access program. To contact Mayo Clinic, here is the online form and contact numbers for our 3 campuses http://mayocl.in/1mtmR63

I'd like to also bring @jmb73 @jeank1234 @siobhanmcv and @mrector into this discussion to share their experiences.

Sandy, what symptoms are you experiencing?

Liked by mrector

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