The week of my MRI, my daughter moved in with her boyfriend. It is closer to school and work for her, but it made me so depressed. I was a single mom for the majority of her life and every decision and choice I made was for her. All of a sudden, I am alone. Empty nest. I know she had been preparing me for this. As high school went on she was home less and less. Work, school, activities. Then after graduation she spent the summer coming home just 2 days a week. And now she is gone.
The day of my MRI, I go in and of course the machine is down. They rebooted 2 times and finally had to unplug it and plug it back in. That gives you real confidence… The workers (I assume they were technicians?) were very nice, but they took my glasses when I got there and put them in a locker with my purse so I really couldn’t see anything but the color of their clothes. They asked if I was claustrophobic, I said I didn’t know because I never really tested it before. I had just had that conversation with my husband that morning. They had me lay down with my head in this cradling pillow. Then they stuffed something down beside both of my ears. First they take my sight, then they take my hearing! Then they put on the face mask I had seen in pictures and videos of head scans. I wondered if I looked like Hannibal Lecter. I was in my regular clothes and had warned them that I had metal on in my bra. She said that was fine. For some reason I was under the impression I would break the machine with it.
The scan was completely painless. It wasn’t loud at all because of the ear muffs or whatever they had given me. I warned them that I was a gusher when they were getting ready to give me the dye. She said that was good to know. I explained when I had the HIDA scan I forgot to warn her and made a real mess. The whole thing was over in about a half hour. They said the radiologist would look at them in the afternoon and I should have my results by the end of day and if not, call my doctor in the morning so I wouldn’t have to worry all weekend about it. I laughed. I said you don’t know my doctor. She is probably on vacation and I will hear back in 3 weeks! She said she hoped not!
Friday I couldn’t take the waiting anymore so I called the office. Surprise, surprise. No she won’t be in all day. Great. Monday Jason called me (he was wearing black that day) and asked if I had gotten my results and asked how I was feeling. I told him feel fine, my normal anyway. I said no, my doctor had been out of the office Friday. He apologized and said he wished I could talk to the radiologist directly, but that isn’t allowed. That scared me! WHY? What’s wrong??
Monday afternoon I called my doctor’s office again. I told them I had an MRI Thursday and was still waiting for the results. They explained that Jyl had been on vacation the entire week, not just Friday and her schedule was full on Monday besides having a lot of calls to return. Oh, well excuse me for wanting to know! They asked if I had left a message and I said no. They said they would give her the message that I called. Why is getting test results like pulling teeth!? I thought this was the doctor I liked. Now I am wondering.
Tuesday morning I took my phone to the bathroom with me. I had been carrying it religiously since the scan. She called. She went over the results. Everything was fine, brain, veins, etc etc. Then she said, “There is a side note here. He said you have empty sella syndrome. Apparently your cerebral fluid has pushed into a space where it doesn’t belong and has flattened your pituitary gland to where it can’t be seen on the scan. I am sure it is there or you wouldn’t be alive. I will be honest with you, I have never heard of this before. I had to look it up. You may want to google it.” She went on to say, “This could be the cause of your headaches and visual disturbances. Have we ever checked your prolactin levels?” I said no, I have never heard of that so I’m sure we haven’t. She said, “There is one symptom listed that I don’t remember you ever mentioning, do your breasts leak?” NO! But that happened to my sister once when she was in exercise class! I mentioned that at my last eye appointment the doctor mentioned that I had cholesterol deposits in my eye and next time I had blood work I should have my cholesterol checked. She said ok, but you have to fast for that. OH, GOD!! I told her she is killing me! At least I have insomnia. I will get up at 2, drink my coffee and then fast the rest of the day. She laughed. When I can’t have my coffee I get headaches so bad I want to throw up. Yes, it is an addiction…
I get back to my desk in a daze. I have to look this up. I put the word out to my support team and they hadn’t heard of it either. So I started reading about this empty sella syndrome. Everything contradicts itself – imagine that! Another disease of theories. Some say it is as rare as 1% up to as common as 25% of the people have it. Theories of causes are traumatic brain injury – haven’t had that. Child birth (pushing so hard it causes intracranial pressure enough to break through the membrane). Idiopathic Intracranial hypertension could be a cause – that is checked by a spinal tap. Inflammatory autoimmune disease (like Lupus) could be a cause. So they say most people that have it don’t experience any symptoms (or are the doctors just not listening??) But some have headaches and pituitary dysfunction. Turns out the pituitary is involved in EVERY hormonal process. I suppose you would need an endocrinologist to figure out if it is effecting any of your systems and we don’t have one closer than an hour away. One of the possible symptoms is that you can leak brain fluid out your nose!! How would you know?? Every time I get a cold or my allergies are acting up I am going to worry that I am literally blowing my brains out!!!
The tests for many of the hormones are long and drawn out. But my doctor said since my flares go with my hormones, it is very possible something is effected by this. I called her back after my research and asked her to check my A1C since it can effect insulin and diabetes runs in my family. I have already had my thyroid checked and that was fine (even though it was on the lowest “normal” level. Then there is a long list of other hormones that are nearly impossible to test. Cortisol, FSH, ATCH, etc, etc. I just felt so down (the fasting for bloodwork probably didn’t help). It just seems like it is never ending. Why can’t it just be like – it is this and here is the cure?!?! When I read that it is usually “incidentally” found on brain scan, I was like, if someone wasn’t experiencing any problems, why would they be having a brain scan?!? They say it isn’t hereditary, but oddly enough, when my niece was like 8, my sister signed up for an exercise class. During the class, her nipples did start leaking. She was like what the hell??? She hadn’t had a baby in 8 years, she shouldn’t have had any milk. Can’t help but wonder if she didn’t have it too! She was cremated with no autopsy so it isn’t like I will ever know. I read one page on Chronic Fatigue Syndrome where they were proposing a study. Apparently it occurs higher than average in people with chronic fatigue (that was the theory), but I don’t think they did the study. Like endo, doctors don’t seem to care. I’m so depressed.
More tests. More waiting. I feel like my life has been put on hold for the last 2 1/2 years. After a week of not hearing anything, I called. The nurse finally called me back at the end of the day. Everything was great. All of my tests came back perfectly normal. Of course they did! I am the healthiest sick person you would ever meet. At that point I had had a headache for 3 weeks solid. Every waking moment. I just want to yell and scream!!!! Those tests were good enough for her and we are done investigating.
I put out the question in a support group. Anyone else have this? Is there a connection between this and endo? I got a response. Then the group admin said there had been no studies on this and closed my thread. I messaged the woman who said she too had it. I had a lot of questions. She has Idiopathic Intracranial Hypertension. She has to get periodic spinal taps to relieve the pressure of too much fluid, but she said it makes her head feel so much better. Well, that’s depressing. My doctor doesn’t seem concerned so I guess we will never know what caused mine.
I tried another group I am in for chronic migraines. Anyone else have this? Another response. She has Idiopathic Intracranial Hypertension as well as Chiari syndrome, but never heard of Empty Sella. Sympathy, but not much help. I put it out on my Facebook page. Anyone else?? I got a response from another Endo Sister. She has it and the prolactinemia. She takes a dopamine agonist. That was one of the choices my doctor offered me for the insomnia and leg movement disorder. I chose not to take it because side effects were hypersexuality, addiction and gambling problems. That was the LAST thing I needed!! She said it made her lose a lot of weight – I could use that! And her addiction isn’t bad – chocolate milk shakes, which she doesn’t like but her brain tells her she needs. I could go for a chocolate milk shake addiction that still allows me to lose weight!! Unfortunately, knowing me, it would be the hypersexuality. My husband couldn’t take it! She leaks brain fluid from her nose and told me it is watery and pink. Good to know! I will keep my eye out! I don’t think I have ever had that.
I debated. Should I push the issue? Should I keep looking or just give up?? My intuition (or maybe it was the depression) said just give up. But part of me, the one that drives me to constantly read medical articles, said send a note to your Gyno. She is the one who gives you the hormone shots. Maybe she knows something. So I did. Last Friday. Today is only Wed. and I haven’t heard back. I explained that the MRI showed Empty Sella Syndrome and my pituitary is smashed. My TSH, T4 and Prolactin levels are all within range. Should I have more tests? I don’t know why I asked her. She is the one who thinks endo is no big deal. I get to see her again in November. Lucky me.
I keep praying for an answer, but I guess I need to be more specific in my prayers. Who knew God played with semantics? I don’t want an answer like, your tests came back fine. I want an answer to explain what happened to me that 2 1/2 years ago made me just wake up sick one day never to get better. Sure, Endometriosis, Arthritis, IBS, Fibromyalgia, Vitamin D Deficiency, Insomnia, Severe Periodic Leg Movement Disorder, Allergies and Gallstones – Those are all answers I have received. That’s why I have a handful of pills every day and hormone shots regularly. But how could all of this happen over night? No one cares enough to investigate further.