I’m not really sure if this is even related to the aneurysms or not, but it was also noted in my scans that I have a “partially empty sella” and my neurosurgeon sort of brushed it off and didn’t tell me anything but “probably just an overzealous radiologist”. From what I’ve researched though, this is where the pituitary gland is kinda smushed down by cerebral fluid, and often has no symptoms. My concern is I have a ton of symptoms relating to hormones and the bloodwork to back it up. Has anyone else had this co-existing with aneurysm?
You did your homework! For our other members here’s a good article on what Kayla is discussing Empty Sella Syndrome (ESS): Causes, Symptoms & Treatment
I have an adenoma that likes to press down on my pituitary gland. My Neurosurgeon explained to me that she has to order a special MRI that looks specifically at the pituitary or the Radiologist can’t really see it well enough to give a finding. I find the findings interesting as over the last ten years when she found it, I has tripled its size and then goes back down only to grow again. She also said it has nothing to do with my aneurysm, so that might be why you feel yours is blowing you off. But he should answer any questions you have in my opinion.
If your bloodwork is consistent with a hormone imbalance and not just once, you may benefit by seeing an endocrinologist. I was on a heart medication for my SVT that caused some really weird “rare” side effects, you might want to also check whatever medication you’re on. My PCP was always doing bloodwork, those long tests for diabetes that’s done at the hospital and even a lot of thyroid bloodwork. I was always borderline with everything. Once the medication was stopped, it resolved all those issues.
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Thanks @Moltroub. I actually do have an appointment in a couple weeks to see an endocrinologist as well. I have Hashimoto’s thyroiditis, and lately I’ve had even more weird hormone problems than usual. We’ll see. I just wondered if there was any correlation but I imagine the aneurysms were found because of the headaches caused by the hormone imbalance. I was just curious to see if anyone else had this diagnosis with all the brain scans, and what it meant to them… and whether it ever has anything to do with aneurysms. I’m sure the endocrinologist will be able to give me more insight.
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I really hope another member will share their insight Kayla. Several of us do have autoimmune diseases. You can look here Connective Tissue Disease/Autoimmune Disorders and brain aneurysms to see if anyone has Hashimoto’s, I think one or two have to deal with it.
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Hey Kayla,
My name is Merl and I’m a member of the modsupport team here on Ben’s Friends. My personal situation is not annie related, but I have had HUGE issues with CSF and it’s flow. You stated:
“…often has no symptoms…” but then can often have symptoms that sends our systems haywire. As a child I was involved in a MVA. Dr says “Bang on the head… …you’ll be OK” Had headaches but nothing was ever identified. Puberty hit me early, very early, 7-8yrs old, shaving daily by the age of 10. The Dr’s called it all a ‘Precocious Puberty’. There were a few head injuries, even had a couple of passing out episodes “He’s just clumsy…” and everything was minimised. So, I ignored it all and got on with life. I had some oddball/weird effects but I just put them down to ‘Me’.
So, add 15yrs, I’m driving down the road and I get this super bright white light in the corner of my vision and by the time I’d pulled over, I couldn’t see. Called my wife, she took me to the dr who ordered scans “Ohh, look what we found…” he says, like it was all something new. I’d been telling them. Turns out there was a blockage and the fluid couldn’t drain properly and the pressure built up.
For me, I could see ‘signs’, something wasn’t right, but trying to get a medico to identify an issue, that was VERY difficult. We all naturally have variations in particular hormone levels. Often we will get readings of between X and Y, if the ratios are between X and Y they are considered ‘normal’. Primarily cortisol is the indicator they use, but cortisol is but one hormone. There are many others and each can have an influence on the others. Hopefully, the endocrinologist can help.
Merl from the Modsupport Team
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That is so frustrating @ModSupport. I truly cannot wait to see the endocrinologist because my NP has been ordering lots of bloodwork to support the hashimotos diagnosis and when I started having a ton of menopause symptoms so early, she said go to the gyno. The gyno was a misogynist jerk who told me to “drink a glass of wine at dinner and keep lube by the bed” and have sex even if I don’t feel like it. DESPITE the fact that low libido was not even a symptom I had complained of. When I said I really think I may be having some issues with my hormones bc I have actual symptoms that need addressed he laughed and said “not unless you have ovarian failure- which you don’t.” I insisted on bloodwork to support that—- I have estrogen lower than a postmenopausal woman. I haven’t gone back to him. I know to fight for my symptoms because I’ve had similar issues when I had cancer in my appendix and people wouldn’t listen at age 12. At age 25 I was thin and I noticed a large bump over my right ovary… it took me FIVE doctors to get someone to admit they could see it and he immediately said oh wow! let’s get an ultrasound right now. I had a softball sized teratoma (and my ovary) removed the next morning. I’m certainly no stranger to having to keep pushing to get help from the “medicos”. I’m hopeful that all the bloodwork and imaging will help me get answers I need to feel better. I actually have found something I think might link some of these hormone issues to aneurysms, especially in women. If anyone ever reads this and wants to know, click the link. Low Estrogen and Aneurysm
Hey Kayla,
Due to the fact that the brain controls everything I have found trying to obtain clear answers can be very difficult, with lots of “…It could be ‘A’ or it could be ‘B’…” but using that theory it could also be ‘C’ or ‘D’ or…any other letter. I’ve had more pseudo diagnosis than I can count on my fingers (and toes)
PLEASE, Do NOT be going to the appointments with the expectation of obtaining an answer. I have attended appointments with such an expectation only for it all to be minimised or for it all to be put back on me, like I choose to be in this position. If you have no expectation of an answer, you’ll be less likely to be disappointed when such answers are not forthcoming. Some medicos make out they know it all… …They don’t. For me, it wasn’t until it became an emergency situation that a more complete investigation was undertaken, prior to that it was easier to label me a hypochondriac “It’s all in your head…” little did I know just how real that was, but they were meaning psych. I have found that if we have ANY previous diagnosis, often these are identified as the cause/reason for any ongoing symptoms.
Due to the medical merry-go-round, I have become a very strong self advocate and I query everything. And the medicos hate it. I had one tell me straight up “I’m the Dr, I’ve done years of study and I know. You? You’re just the patient, you wouldn’t know…” Arrogant sod. Had my wife not been there I most likely would have punched the man in the nose. Now, I go along to their appointments and go ‘Yes sir, No sir, whatever you say SIR’ take their information, then investigate for myself, get myself informed. Then come the next appointment I have my own questions.
Oppss, apologies, that’s my shorthand. An MVA is a Motor Vehicle Accident.
Merl from the Modsupport Team
@ModSupport thank you for the advice. I can’t imagine everything you’ve been through and still having to push to get someone to listen. My mom has been a nurse for 30 years and she gave me some very solid advice. She says if you know you want a certain thing to be ruled out, know what test that would require. When you ask for that, be clear about why you think it could be what’s causing your symptoms. If for some reason they refuse to test, ask for it to be noted in your chart that you’ve requested it on this date. The reason being, no one wants to deny care and then something happens and you were right but they didn’t follow through. Keeping a level head when you’re stressed and you’ve got a bunch of awful symptoms is hard. I have also considered violence once or twice. 
I have been very lucky to be able to eventually find someone each time to dig until they find an answer though. If it weren’t for the internet research, I might not be here today, so I appreciate a fellow pusher. I get a kick out of your responses, thanks for all you do for the community!
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Back in the late ‘80’s, I had one that told me to get pregnant and it would solve all my problems! I could barely walk it hurt so bad, trying to shift a manual tranny wasn’t any easier. Went to the only female GYNOB that was usually a four to five month wait to get in. I explained what was going on to the RN, she spoke to the GYN and I had an appointment that day. Dr.B did her exam, she wanted my records that day, so back to the jerk I went, he refused to give them to me. Had to drive back to Dr.B, told her what they refused to give me my records. She called and told the doctor that I might not have the money to sue him, but she certainly did and demanded they have my records ready when I returned. They were ready, took them back, she read them, called him and said if he ever did what he’d been doing to me to any other patient, she’d have his license. He had been doing pelvic exams three times a week. I had surgery the next day, couldn’t have gotten pregnant if I wanted to, too many adhesions.
Be careful with the older papers or any research as the field of Neurosurgery changes rather quickly. See if you can find more recent ones as the author is citing things from the 80’s and early 2000’s. See if you can find one that the author actually did the collection of data and isn’t just using other people’s work. Try Japan, if I recall correctly, they have more cerebral aneurysms than any other country. France also does some amazing research, so don’t limit yourself to the USA.
Also be cautious in statistics, there’s one rather popular organization that was quoted a lot in just about everything back when I first started researching. I discovered a few years ago that the organization “just agreed” on the numbers with no back up to support their decision. There was also two rather large studies one on unruptured aneurysms and one on ruptured aneurysms that contradicted each other, to my damaged brain, it seemed that there was a lot of politics involved on the one many doctors felt more reliable and wasn’t the case with me or my Neurosurgeon. The unruptured study was emphatic that my little 5mm aneurysm wouldn’t rupture but it certainly did. I don’t see either study being used much anymore.
Good luck with the Endocrinologist I hope you get the answers!
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@Moltroub thanks for the pointers! Im sorry you went through that with your gynecologist.
As a teacher, I should be paying more attention to the details of the research. I try to stick to peer-reviewed journals but there is so very little data on this connection (if there is any). I just wake up in the middle of the night thinking about decisions to be made and I feel better the more educated I am on a topic. The wee hours of the night probably aren’t my best study hours though . I have noticed Japan seems to have more than most in medical studies and journals on every medical topic I’ve taken an interest in. When my surgeon removed my ovarian teratoma he actually told me he reached out to a Dr. in Japan who had done a study on struma ovarii because it was so rare. I really appreciated that level of interest in his practice…. It’s too bad he has retired.
I have a lot of memory loss, losing my words, and trouble with brain fog, especially for my age. I forget a lot of things so I try to keep a trail for myself to follow when I find information that may be of use in the future. I keep a journal of my appointments, and usually bring someone with me to anything that might be emotionally shaking so I don’t zone out and miss information. I’ll continue to look for more recent data, but I’m not so sure I’m going to find anything. It doesn’t seem to be of much significance to them yet. I did uncover a lot of information about the pituitary gland and all of my hormone problems through the process of all of this so at least the time wasn’t wasted!
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Learning new things is never time wasted! I get excited everyday I learn or relearn something. To me, it means I’m going to have a great day. I had promised my Neurosurgeon I would not get on the internet for a year after my rupture, so that’s what I did. But those first few years, I could find nothing significant on Vasospasms, except when they would start or end. I was once on a zoom type of meeting with a support group who had a Neurosurgeon as the speaker. I asked him about vasospasms and shared I had them for 21 days, he said that was impossible. I told him I have the medical records to prove it. I’m really glad he was not my Neurosurgeon! The result is I’ve never gone back to get on one of their meetings. But now, vasospasms are in a lot of research. We just have to wait for medical science to catch up with us it seems.
Research has always been a passion of mine since college. In many ways with the internet it can be easier but it can also be more confusing. When I was working, my Supervisor always gave me the hard medical cases. I’d start with one of the County Health RNs who’d give me suggestions on what to look for on the internet. Sometimes, words parents or doctors would use wouldn’t be the correct words to do the search with if that makes sense. Internet search results are always related to the words and sometimes the medical field can use a plethora of different words for the same condition so look at any possible differences.
I require doctors who can think outside the box, as I have several pretty rare things going on. I really appreciate having one who is strong enough to say they don’t know and willing to do their research. It appears you do as well and I’m really glad you have a great NP! I’m happy to read you take someone with you to appointments. BH always goes to my first appointment with a new specialist and if I’m having what I call a bad brain day, BH will drive me and come in to that appointment as well. BH can’t take a decent note though and worse yet, can’t remember what the note means. 
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It’s a good thing you know when to take what the doctors say with a grain of salt! I’ve considered taking voice recordings of appointments if needed so I can play it back later and write down notes in my little journal. Luckily, my husband’s memory is a steel trap still so I just borrow his. 
Recording them would be great! Make sure they allow it before you start recording and have your phone fully charged. When I was a CPS SW, our agency didn’t allow it, I didn’t care so that’s what I’d tell my clients. Most never recorded me. One tried to share it with the court but it had so obviously been edited it was hilarious, causing the entire courtroom to laugh. They forgot to erase the part when I said, “please do not record me as our agency doesn’t allow it”.
Three cheers for your husband’s memory!
Haha well I would of course ask first. I have no intention to use it in court, but I think it would just be courteous to ask first. I imagine those people had intentions other than just remembering what was said.
That’s a remarkably nice way to put it🤣