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Pineal Cyst - Follow Up On "kristen's Disaster"


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Hi again everyone,

First I would like to thank everyone who took the time to read and/or respond to my previous topic "Kristen's disaster! Please help". All of your advise, thoughts and prayers were/are much appreciated. I have one new question to ask of everyone. Kristen's doctors (more or less by process of elimination) are now suggesting that she have the cyst on her pineal gland drained. The cyst is rather large (about 12 mm by 9.5 mm) and it is pushing on the corpus callosum in her brain. The doctors are now saying that it could explain her headaches and possibly even the seizure-like "episodes" that she continues to have. Has anyone out there had a pineal cyst drained? I know that there is a lot of contradictory information on the web. Some info claims that the cysts do nothing while other things that I have read indicate that large cysts on the pineal (such as Kristen's) can cause some of her symptoms. The doctors have looked to see if the cyst seems to be effecting the flow of cerebral spinal fluid and have not been able to give a definite answer one way or the other. We are going to another neurosurgeon next Wed (we have already been to Beth Israel in Boston and will now try Mass General in Boston) to get a second opinion before deciding, but as we are still waiting to hear back about getting into the Mayo Clinic (who knows when) and since this is the only thing currently on the table that has any hope of making her better, we are thinking it may be worth a try. I have read that pineal surgery can be risky but the doctor as Beth Israel claims draining the cyst is actually a very low risk procedure as far as any type of brain surgery goes (turns out he just so happens to be a pineal surgery specialist). Any thoughts? Thanks again so very much.....I can't tell you how much Kristen and I appreciate the help and advise.

Nils (Kristen's husband)

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Nils,

The articles to the right on Pat's link are probably more pertinent to Kristen's situation.

My only advice is to get another opinion, and then another. This is a big deal. It sounds like the doc you saw was a "top doc" in the field so his opinion should count for a lot.

I also have a pineal cyst, about 1/2 the size of Kristen's. I was told mine was almost blocking my cerebral spinal fluid, but not quite. The neurosurgeon I saw at Emory told me to periodically roll my eyes backwards. According to him, as long as I could do that, my pineal cyst wasn't interfering. :rolleyes: I've done repeat MRI's over the years and it hasn't changed.

Kristen's case is very different- the cyst is quite large. The fact that it's possibly blocking cerebral spinal fluid, isn't good.... Are there any more definitive tests to verify that? I have lots of cysts (in various parts of my body) and I've been told that there is no point to draining them because they just fill back up- has that been brought up?

There is a chance that Kristen's symptoms are caused by the cyst and there is a chance that the cyst is just an incidental finding. The fact that Kristen's symptoms are episodic and she has good periods point to the fact that this may be dysautonomia & not related to the cyst. Are her symptoms worsening without let up now? That could point to the cyst being the culprit.

You two are in my prayers. What a wrenching thing to have to go through. Please talk to as many docs as you can, as quickly as you can. And, do more tests if they can give you more info. Let us know what you find out.

Hugs to you both-

Julie

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I just want you to know you are both in my thoughts and prayers and that I'm in the Boston area and both of those hospitals are wonderful and have given me the best of care...

Keep us posted!

((((HUGS))))

Blessings, BellaMia~

I do not need to know any thing about this day

beyond this moment. This moment is perfect...

just as it is and I can handle anything in this moment.

My higher power gives me all the stregnth I need

to handle whatever comes up in this moment.

~FROM the book, time for joy~

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I also have a pineal cyst, but it is smaller than Kristen's. My neurologist said it was only a problem if it grew and intends to watch it unless I become symptomatic. I would tend to follow the doctors' lead on this one and get the things fixed that CAN be fixed. There's not a lot of room in the skull and who knows what it is pressing on?! Check out the surgeon carefully, if other surgeons defer to him, trust him.

Prayers and positive thoughts!

Jennifer

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