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Re-occurrence of Prolactinoma

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Replied by PNA-Tammy on topic Re-occurrence of Prolactinoma

Thank you so much for sharing your story. As you begin this journey again I highly recommend that you see a team of pituitary specialists. Not all doctors have the training necessary to treat pituitary disorders, specialists can make a big difference in your quality of life.

Atlanta has an amazing pituitary center at Emory University. I am not sure if they have financial assistance available but it is definitely worth looking into. I suggest you get in touch with them, they are experts in pituitary medicine and they also may know of local support that is available to you.

Here is a link to their profile on our website which includes contact information:

pituitary.org/medical-resources/hospital...-university-hospital

There are also some resources available that may be able to help with prescription costs and possibly other expenses. Here is a link to our resources page:

pituitary.org/knowledge-base/related-links

The page above also contains support group information and other resources, but there is a section for financial and medical assistance organizations.

I hope this information is helpful. Please feel free to contact us if you have any questions or for more information. We can be reached at (805) 499-9973 or via email at [email protected]

Take care,

Tammy Mazzella
Pituitary Network Association
1 year 1 week ago #10438

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Re-occurrence of Prolactinoma was created by sewingdoc

Hi everyone, first of all, I am so relieved to have found this forum. I'm all out of sorts right now, and so few people understand.

I'll give my history and my story, but first - I am pretty certain that I have another tumor. I had surgery to remove it 10 years ago, and it suddenly occurred to me recently that all my symptoms are adding up.

Here's my story, as short as possible (ha!):

Back in 2005, when I was 30, I started lactating out of the blue. I had never been pregnant in my life, so it was bizarre and concerning. Went through all the typical avenues, and it wasn't until I went in for a routine exam for birth control in 2006 that the blood work came back with elevated prolactin levels, that triggered them to investigate further. It took forever, but there was finally an MRI that revealed the tumor (I believe around 2.4 cm).

I moved to Atlanta in late 2006, got married, started a new life. In early 2007, I finally found a doctor that would work with me. I also had a wonderful eye doctor that happened to catch that my peripheral vision was lacking and getting worse. She was key in getting the insurance company to move an authorize specialist visits.

The symptoms I had back then, that I can remember, were the lactation, frequent headaches (they were generic that I remember), unexplained weight gain and not able to lose a single pound, extremely elevated blood pressure, even on meds, severe anxiety, sleep disturbance, night sweats, and loss of peripheral vision.

In July of 2015, the doctor I was seeing referred me to a specialist, who said surgery was his highest recommendation given the toll it was taking on my health, my inability to conceive, and especially my optic nerve. So surgery was scheduled for September 11, 2008.

I was very comfortable with my entire team of doctors, especially the surgeon. At the time, I was working for a great company that self-insured, so it was pretty easy to get everything going.

I had my surgery at Piedmont Hospital in Atlanta, and to this day, the best hospital experience I've ever had, all things considered. However, things weren't easy peasy.

Because of the BP concern, they put an internal monitor in my hand, which meant the IV had to go into one of those huge metal lock things on the inside of my elbow. It was awful, and they destroyed my veins trying to get it inserted. I have PTSD from that alone.

Surgery was pretty good - they did transsphenoidal, but the doctor did say the tumor was buried pretty deep in the pituitary gland, and there was likely some damage. I spent 3 solid days in the ICU after because my BP was erratic, then when I moved to a room, it took 3 days to get the diabetes insipidus under control. I finally went home. Did pretty good at home... until a week later when clear fluid was pouring from my nose.

Went in to see the surgeon, not expecting anything, and he didn't waste time sending us over to the ER. They weren't sure what to do with me, but they knew clear fluid pouring out meant spinal fluid and risk for Menengitis. So they admitted me.

They rushed in and sort of explained that they would need to drain some fluid and heal up the site in my skull. The explanation they gave was soooo much nicer than what actually happened. Absolute worst pain of my life, them trying to insert the needle in my spine. My husband could hear the screaming and crying from the waiting room. THAT is hands down worst experience ever.

Once it was finally in, I spent a week laying on my back, unable to sit up or move while the spinal fluid drained and the entrance site in the skull could dry up and seal. I had to argue with a few nurses who didn't understand they could raise or lower my bed because it meant excruciating pain. I was given stool softeners to avoid having to go, could only live on broth and jello because they could be consumed laying down. Sponge baths, menstrual cycles... I saw it all that week in such a a helpless state. So humbling.

After 9 days, I was finally released, and all ended well.

Afterwards, I spoke to my endorcrinologist about the possibility of conceiving, and her advice was that given the damage to my gland, not to set high expectations, but to see if things happen naturally.

And two months later, on the first try, they did! I conceived. And I had a fairly uneventful pregnancy. Given my hippie-tendencies, but also the trauma from that whole experience, my BP would skyrocket with every trip to the doctor's office for prenatal care. I found an amazing homebirth midwife, and while technically illegal in Georgia, both my primary care and heart/kidney doctor supported this decision, knowing I would end up with a c-section with my BP going crazy in a hospital environment.

I stayed on BP meds while pregnant and was monitored closely. I gave birth at home at 43 weeks and 1 day, healthy baby boy at 9 lbs. 13 oz. Perfect in every way.

My BP dropped dramatically for a week after, then back up to needing meds.

Now, all this was back before the healthcare act, when things were different. I did have an MRI 6 months later, came back clean. And again 2 years later, came back clean. After that, my health insurance situation changed, and I just couldn't afford to bring on more medical bills (took me 8 years to pay off all the original bills).

So I fully admit, I have not been having regular MRIs, because I cannot even afford the thought of having them.

About a year to two years ago, I started having very consistent headaches. Different - they are stabbing headaches, and usually center around my neck/shoulder/skull area, predominantly on the right side, but sometimes left or both as well. They last for days and days - not a migraine, but they can be as bad or worse. Throbbing, pulsing... and most commonly about a week before my period should start, and carries through. They've gotten much worse in the last 4 months, to the point of being nauseous, lightheaded, unable to function until they subside some.

I also started to notice the last few months that I have bumps and bruises all over me because I am constantly misjudging distance or more commonly, hitting my hands and sides on door frames because I don't even see them.

Besides the headaches, the worst part is sudden, unexplained irritability and anxiety. I mean extreme anxiety, beyond what I have ever dealt with.

And then there's the weight issue. I definitely gained weight with the first tumor, and held on to it. And over the last two years, I severely changed my diet to leafy greens and moderate protein, ruling out grains and sugars. I felt a lot better in general, but I have never lost a single pound. It is so bizzarre. My face has developed the "moon" face again, and all the things from the first tumor.

I have played a lot of it off, assuming it's menopause, or peri-menopause (I'm 42 this year). Some of those things make sense, but my periods aren't really matching up to that theory.

Oddly, it has never once occurred to me that the tumor could be back. Not once.

Until last week, when I started lactating again. When I was pregnant with my son, I suddenly lost my breast milk completely at 7 weeks. Dry as the desert overnight, gone. I have had one miscarriage since his birth, and after that trauma, decided not to take that chance, so my husband had a hysterectomy so I wouldn't have to mess with hormones. So no pregnancies.

When the lactation started, it suddenly hit me like a ton of bricks. I did some googling and it occurred to me that my symptoms all line up with a pituitary tumor. Again.

I even found an article by a professor/doctor that specializes in reoccurance of pituitary tumors, and her last statement in the article haunts me: "In 95% of cases, the patient predicted that the tumor returned before there was even a diagnosis." Meaning that their intuition and recognition of symptoms indicated that they already knew before they had an MRI.

On one hand, at least I know what it likely is, not a big mystery. On the other hand... oh to be doing this again :/

I am self-employed with a growing, but still startup, business. I have no money, my health insurance is basically catastrophic and won't pay a single penny until I reach the $13,000 deductible.

There is a doctor near us that has always been cash only, catering to the self-employed community that cannot afford health insurance. I am going to make an appointment to have bloodwork done to at least check my prolactin levels. I mean, I am no doctor, but lactation is a pretty clear indicator. I guess there could be other causes, but, I doubt it.

And then I am just going to have to work even harder to get to a point that I can either afford better insurance or pay out of pocket to do whatever I have to do. But right now, there is no budget for anything.

It's discouraging and scary, but so grateful to have found a community of support.

Andi, 42
Atlanta, GA
1 year 1 week ago #10437

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