I hope someone can help answer some of my questions, or at least offer some reassurance. I was recently diagnosed with a pituitary tumor; they are still doing lab work to determine what kind it is. So far all the hormone studies have been normal, except for DHEA-S. And I had the ACTH stress test after that to test my adrenals, and that test was normal. I see the neurosurgeon and neuro-endocrine doctors tomorrow.
So, a little about me: I was born with a congenital heart defect, complete AV block. I was early at 31 weeks and weighed 3lbs. The doctors weren’t so sure about my survival the first few days, but I proved to be very stubborn. I did fine until my mid- twenties, I even managed to forgo a pacemaker until just before my 19th birthday, and 10 days before I headed off to college. I started to have more cardiac symptoms and was started on some meds which helped. I met my future husband and things were good. Then I started getting terrible migraines, I would say around 2007? These coincided with an increase in heart arrhythmias. I had an ablation done in 2008.
I eventually was referred to neurology by my PCP for the migraines. They weren’t really able to find any specific reason for them. They did find some issues with the ways my neurons fired, so I was worked up for myotonia, got all the evoked potentials testing done, the vision field testing, had a muscle biopsy to look at MtDNA for the possible myotonia. The vision fields testing came back slightly abnormal, but not enough to be anything definitive. Basic conclusion was, something wasn’t right, but they couldn’t say what it was. Around that time (2010 by now), I had an episode where my vision went black then grey and then fuzzy and finally returned after about 45 seconds. I was not a very good patient, instead of going to the ER like my doctors office said, I just waited and went to see them a few days later. I was tired of being poked and prodded at that point, so I really didn’t want to go. I did go to the ER after seeing my primary dr. a few days later. They did the eye exam and all that testing, and they did a CT. Everything was ok on the CT, except my pituitary was enlarged. No mass, just enlarged. So I was asked if I was recently pregnant, which I had been having recently had a miscarriage. Ok, well then the pituitary size makes senses, as it was at the upper limit of a woman who was, or recently had been pregnant. It was 12mm at that time. I followed up with neuro once and then just fell out of the system because I was tired of all the appointments. I had also been worked up for a possible bleeding disorder at this time, and it came back as being PAI-1 Deficiency. Basically my blood clots, but the cloths don’t always hold. And there can be a delayed bleed. And during this period of time my mood changed. I would suddenly get blindingly angry for no real reason, or for something small.
Which brings us somewhat to the present. In 2011 I got pregnant and had a healthy baby boy, via c-section after an induced labor stalled at 9cm, with him getting a stuck on the way down. Everything went great with the pregnancy; I felt the best I had felt in years. But, of course everything went a little too well for my luck! I had him on a Tuesday evening, we came home that Saturday, and the following Saturday I hemorraghed. Lucky for me my husband woke up when he did. ER found that I was still dilated to 9cm and I had giant clots of blood inside. I got blood, rested overnight. They got everything closed up back to normal and I went home the next day. Two days later I was back, ended up being septic and in septic shock. Spent a few days in the ICU and a week on the regular floor before being discharged with a PICC line.
A few weeks later I went back to work, and that is where I started noticing the memory issues. Or function issues. I was much slower at my job, would get confused easily, etc. I was also starting to lose clumps of hair! Saw my primary who referred me for the neuropsych testing and ran the DHEA-S lab. I was found to have minimal deficite. I went to speech therapy and learned some tricks and tools and it seemed to be getting better. Then about 2-3 months ago, I started noticing my memory getting worse again. AND a new scary thing. I was starting to use opposites. Like I would call a spoon a fork, even though I was thinking spoon—fork is what came out. Yesterday I asked my son what sound a sheep made, and then proceeded to oink, oink at him. When I intended to ask what sound the pig made, but sheep is what came out!! So annoying! So I went back to neurology to be examined. Saw a new DR. They referred me to a new study where they are doing MRI”s in patients with implanted devices, like my pacemaker. I figured why not, maybe it would FINALLY answer my questions and all my symptoms. So I had it, they found the tumor, which appears to have had a bleed. I had a second MRI that I am waiting results for, that one was only of my pituitary region.
I am worried that this thing is big, since my pituitary did measure 12mm in 2010, and that maybe I should have pressed more about it then. I am worried about how they will fix it, since I have had prior jaw surgery and have several plates and screws holding my maxillary bones together. I am of course worried about the future for my son and husband. I am worried because I am prone to infection, and the septic episode really freaked me out. I am hoping this puts a nice bow on all my symptoms: extreme fatigue, no appetite, no libido, irritability, twitches in my r eye and occasionally in my r hand, increased pressure on my plates and jaw—which I had actually scheduled an appointment with my old oral surgeon about. I am worried about the oppacification in the maxillary sinuses and ethmoid region of the sphenoid.
I really don’t know what I did in a prior life to earn all this, but I could just use a break!! : ) Thanks for reading my novel.
Your "novel" broke my heart, you have alredy been through so much.
It sounds like you've got a great understanding of what's going on with your condition, I'm hoping you have a good support team (family, friends).
My advice to you would be take it a day at a time. Celebrate the small things and laugh with your son at the animal noises. Slow down and try to do something each day that you really enjoy.
My situation in no way compares with what you have already experienced but through it all I learned to keep my faith. I also learned a tough lesson, people truly want to help and it's okay to let them. My sister came to help care for me after my surgery, we spent 3 weeks together and even as crappy as I felt those were some wonderful times. I never thought I would need someone's help to walk or shower :-). My illness helped heal my family in ways that we didn't even know were broken. My marriage is now stronger than ever and my siblings are now connected again.
I will keep you in my prayers,
I am sad to read that you have had such a horrible time. I am glad however that you have a husband who cares. I wonder too what I could have ever done to be dealt such a hand, and then I see someone with no legs in a wheel chair. The thing is that whether it's your pinky or their leg, it is your pain and each person's pain and struggle is their own. You have a right to worry and it is understandable. We all worry. I can tell you that it will get you no where but more worry and depressed deeper. That is what I have found. (Doesn't mean that I don't worry), but I try to take one day as it comes. Its all I can handle really. I had to let my kids go and now all I have is me and Alfred (my tumor) and I am sad as I can possibly be. If I tried more than one day at a time I believe I would end it all. I believe I can write that here without being hauled off and even if I were hauled off I wouldn't care. Wow--I was trying to help. Sorry, but really, worry is OK and normal. One day at a time.