Pineal Cyst

I've posted about this before but it's been a little while.

I saw the neurosurgeon on Monday for the pineal cyst that was found on my MRI last month.

The cyst is 9mm. Neurosurgeon says he doesn't think it's causing any of my issues and just keep treating for my Lyme and recheck it in 6 months.

But now I can't help but wonder if it's been there for several years Bc I've had headaches, fatigue, and insomnia for awhile now. These are all symptoms of Lyme and from what I read symptoms of pineal cysts too.

I'm just beside myself!

I've already had such a hard time accepting and dealing with Lyme Disease and now this!

I am normally such a happy person and go go go all the time.
Now some days I can barely get out of bed.

The pineal gland is responsible for producing melatonin,right?

Is there a test to check those levels - to check that it is functioning well?

I remember you posting before - and reading that often nothing is done...if it's not symptomatic.

I understand you're worry - how do you know what is lyme symptoms...and what could be the pineal cyst symptoms. I think you need to focus on your lyme treatment and hopefully those symptoms will resolve soon and you will be confident that they're not from the cyst.

I read that the gland itself is 5-8 mm. Wondering how the cyst could be that large?

Are you going to have follow-up mri's to check it periodically?

Thanks MS! Wow that's a ton of research you've been doing.

Question about the size of his cyst. Isn't 9 mm larger than the gland itself...or am I incorrect?

Mustard Seed said...

Girlie said...
Thanks MS! Wow that's a ton of research you've been doing.

Question about the size of his cyst. Isn't 9 mm larger than the gland itself...or am I incorrect?

Yup it is. If you look at a pineal cyst on an MRI you can't even see the gland usually.

So I'm wondering how can the cyst be larger than the gland? It extends into another area of the brain?

BeatingThisBeast said...
Thank you all for your replies!

MS how big is your cyst?

5mm with a 3mm calcification on the anterior side.

Girlie said...
So I'm wondering how can the cyst be larger than the gland? It extends into another area of the brain?

Ya it extends into the space between the gland and the splenium.

Post Edited (Mustard Seed) : 9/15/2017 2:47:25 PM (GMT-6)

Girlie said...
The 'things' we find when we're trying to figure out what the heck is wrong with us.


I found out that my pituitary stalk is slightly deviated to the left.

Nothing was said about it. Maybe I should follow up with that...

Girlie, do you have MRI images you could post? A deviated pituitary stalk is often seen in empty sella syndrome, which, with pulsatile tinnitus, would likely mean intracranial hypertension (a known complication of Lyme and other infections).

Sorry for the hijack, BeatingThisBeast!

My apologies as well for this hijack! Easier to answer Girlie's question here, but if you want any more information about pineal cysts just let me know, and you might find the following information helpful when looking at your MRI.

Girlie said...

No images - I just have the report.
Interesting the intracranial hypertension is coming up now. I just started thinking about that because when I went on the Babs treatment - with Mepron and mino...the pressure in my head behind my eyes got really bad.

I had been on mino for a long time...and had read it can cause that especially after long-term use...so I switched to Ceftin.

The head pressure is much better. (just a few weeks later) Hard to know if I was herxing with the mepron and Mino....and would have resolved anyway...OR was it the mino making it worse.

So, with treatment - when the intracranial hypertension completely resolves...will the stalk go back to where it should be? Or does it matter if its deviated to the left.

is IV abx treatment recommended?

I did have the pulsatile tinnitus...but it's pretty much gone now...since Babs treatment. Occasionally I have it - but very minor compared to before.


This MRI was done at the end of 2013 though after I tested high in cortisol. I had the dexamethasone suppression test done which ruled out an adrenal issue.
I requested an mri at that point to look at my pituitary gland.
That's all that was found.

Good news about your pulsatile tinnitus being gone. I'm not a doctor so I'm obviously not qualified to make any diagnoses, but I'll share my thoughts on pituitary gland/intracranial hypertension below:

When the radiologist says the pituitary stalk is deviated to the "left", I'm assuming they mean literally to the left, as in closer to the left side of your head. This is NOT what's normally seen with intracranial hypertension (IH).

With IH, the cerebrospinal fluid (CSF) is under greater pressure, and often herniates into the sella turcica (the bony space that houses the pituitary gland). As CSF pushes against the pituitary gland, over time, the gland shrinks and the pituitary stalk is pushed posteriorly (towards the back of your head). Check out this image of a normal pituitary gland:

/c1.staticflickr.com/5/4379/37074602066_0b275a4b70_b.jpg

Now look at this empty sella:

/c1.staticflickr.com/5/4380/37074602486_35084ef864_o.jpg

You can't see the stalk in the first image, but it runs through the middle of the sella. Notice how in the second image the stalk has been pushed back in the sella? Now, is it possible that a doctor looks at this, and explains it to you as "your pituitary stalk has deviated right" (or left depending on the orientation of the MRI), when really, it's deviated posteriorly? Maybe. You can't really know unless you see the MRI. An easy solution to this problem would be to go to the hospital where you got the MRI and request the images on a disk (if they ask, say you're getting a copy for a doctor). They keep them on file for several years.

Anyway, I'm not suggesting you have any of this, I just brought it up because I know IH often presents with pulsatile tinnitus (among other symptoms like headaches, vision problems, weakness, numbness in extremities, and hormonal issues if the pituitary gland is affected enough), and your mention of a deviated pituitary stalk piqued my interest. It might also be helpful for BeatingthisBeast, if looking for signs of IH on MRI.

Post Edited (Mustard Seed) : 9/16/2017 12:43:49 PM (GMT-6)

No sorry, I don't know much about pituitary stalks deviated to the right or left. Seems likely to be incidental if that's the case but I'm not sure.

If the stalk is actually pushed posteriorly and you have an empty sella, you may want to talk to your doctor about getting a lumbar puncture at some point, in order to test for intracranial hypertension.

I'm not sure if oral antibiotics are enough, or any antibiotics for that matter; I'm currently struggling with the same dilemma. The thing is, many antibiotics cross the blood brain barrier, so it's likely that Borrelia is simply too resistant, rather than the bacteria not being reached. From reading recent research from Zhang, Sapi, etc., it seems that 3 to 4 intra-cellular drugs are needed just to make a dent in persister colonies in vitro (nevermind in vivo).

This leads me to this hypothetical thought that I've been grappling with: if intracranial pressure was occurring, how could we differentiate between Lyme being the proximate or ultimate cause?

For example, is Lyme causing a bunch of symptoms, one of which is intracranial hypertension? Or is Lyme causing intracranial hypertension, which is causing a bunch of symptoms?

I've read at least one report of the latter (scroll down to see the pictures too):

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=131433;p=0

(copy/paste that link; hyperlink not working)

Regardless of any of this, I'd want a copy of my MRI. There are other markers for intracranial hypertension you could find. Plus it's just cool to look at!

Again though, it's really a shot in the dark, I have no idea how applicable this is to you.

I thought I had Babesia for a long time. Originally herxed on Malarone and Artemisinin.

However I never got any improvement on 7+ months of Malarone and 6+ months of high-dose Mepron. CSA/cryptolepis didn't do anything either.

I then did Primaquine at the dosage the CDC calls a "radical cure" for Malaria without any change.

I can find Borrelia swimming freely in my blood under the microscope, but have never found Babesia in dozens and dozens of blood stains.

So at this point I don't think I have Babesia. Or Bartonella for that matter. I have a lumbar puncture next month.

Girlie said...
What's the lumbar puncture for at this point?

Have you had some resolution of symptoms with treatment?

I did test positive for Bartonella - interestingly through a lab in Canada - pcr testing. (after a year of bart treatment)

I remember you testing positive. I suppose that why you've gotten some resolution of symptoms? I know you were on Rifampin for a while.

I have a partial empty sella, so that coupled with a 24/7 headache that's been slowly getting worse has made me decide it's time to do an LP. It's been on my radar for a while. Here's my partial empty sella:

/c1.staticflickr.com/5/4425/36430539684_0b1d57e156_b.jpg

I've had no resolution of symptoms with treatment thus far. Haven't been treating for the past few months.

I'll be restarting a Dapsone protocol this fall, depending on the outcome of the LP.

Ya nothing to lose when the test is relatively inexpensive and easy to do.

Seems likely that changing the Rifampin dose affected it.

Honestly it's really a mess trying to figure out what infection is causing what symptom (as I'm sure you know). So much overlap, it's really important just to look at what medications help you.

I added an arrow to point out the pituitary gland getting squished:

/c1.staticflickr.com/5/4332/36430839434_73da13b63a_b.jpg

My LLMD doesn't know about the LP yet; haven't talked to her since I got it booked. It was my idea to get the puncture, my neurologist wasn't too thrilled with the idea but agreed to it.

I don't have a ton of symptoms, but the 24/7 headache is by far the most prominent. Other than that, tinnitus, muscle weakness in legs, tingling (occasional), muscle twitching (occasional), skin bumps, insomnia, and increased heart rate.

BeatingThisBeast - Have you discussed this finding with your Lyme Dr.?

Maybe having a discussion with him and letting him know what the Neurosurgeon said...will put your mind at ease?