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pineal cyst and empty sella
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shawn567 posted:
I am wondering if someone could help me. I am a 40 year old male. I have recently been told that a pineal cyst and an empty sella was found on my MRI's. It started back in june 2008 when i had a high fever, massive headache and i couldn't move my head. I was tested for meningitis and it came back clean. I then went thru multiple MRI's, a bone scan and a catscan. I was just wondering how concerned i should be. When i was tested for meningitis, the doctor put the needle in the wrong area of my spine and hit the nerves. For the last 8 months or so, i can hardly walk for more than 5 minutes and standing still is almost unbearable. My family doctor has me on nortryptiline and will be changing that to put me on methadone. Any advice i would greatly appreciate
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RedBear2005 responded:
There appears to be more than one thing going on for you, Shawn. If I am reading your posting correctly, both the pineal cyst and empty sella condition were found "incidental" to brain imaging that was done to diagnose your headache and stiffness. Then a doctor made a medical error and caused spinal nerve damage by misplacement of a needle during assessment procedures. You've essentially been discharged to the care of your family doctor - I must infer because the primary treatment team could not find a particular diagnosis for the original condition. Be aware of the following: Many people have pineal cysts. They are non-cancerous formations of fluid that occur naturally in about 1-4% of the population, and they are rarely symptomatic. Whether your particular cyst is related to any of your symptoms would depend on its size, which you don't indicate. Nobody really knows what causes them. Empty Sella Syndrome occurs when the pituitary gland is compressed or flattened within the bony structure where it normally resides. Effects of that condition can be major, as the pituitary gland controls multiple hormonal functions within the body. It is not at ALL clear to me that you are now under treatment for conditions specific to the pituitary. That surprises me and I think it bears serious looking into. Nortriptyline is a tri-cyclic antidepressant drug. This class of drugs is sometimes used "off label" in the treatment of chronic neuropathic pain. But again I am surprised that any competent physician would use it as a primary drug of choice for the type of pain you describe, without first considering opioid NSAIDs drugs. Methadone is also used for chronic pain that is not responsive to the opioid drugs - and it has known and major side effects which is a few rare cases can be deadly. I think you need a second opinion before agreeing to be placed under treatment with Methadone. You will need a copy of your medical records from the primary treatment team and your family doctor. Depending on where you live, I'd also suggest that you be seen and evaluated by a team at a major teaching hospital or regional medical center. You need straight advice and a specific treatment plan to address the following issues: - What is the significance (if ANY) of the pineal cyst in your earlier symptoms? - What treatment program is recommended for compromises of pituitary function that may attend empty sela syndrome? - What is the prognosis for recovery from your physician-induced medical injury, and precisely what is the actual extent of permanent damage from this medical error? - (if you are continuing to have headaches and stiffness in your neck) what course of treatment is recommended for your headaches, and does that treatment interact with any steps that ought to be taken for your pituitary gland treatment? Feel free to come back with specific questions. Go in Peace and Power
 
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shawn567 responded:
Thanks for the reply. When i was shown the mri results the doctor never told me how big the cyst was..but from what i saw it was quite large when the picture of the brain was seen. All my family doctor told me to do was keep an eye out for abnormal growing spurts, any blind spots and so forth. I can tell you that i do keep getting sick at least once a week with the same symptoms, the headache, fever and inability to turn my head. i was told not to worry about it because it has already been looked into and nothing was found. As for me driving, it takes a bit to be able to look around because of the stiff neck. I also have had to quit doing what i do for a living i am a heavy duty mechanic. But i can't do that anymore, so now i have to sit in an office. I will take your advice and go to the university hospital and try them. My family doctor told me he was going to get me a permanent neurologist to look after me also.
 
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RedBear2005 responded:
The phrase "It's been looked into and nothing was found... so don't worry" REALLY bugs me. That's medical malpractice. I don't care what the doctor calls it. If you are being impaired enough to be unable to work at your primary vocation, such a response is utterly inadequate and inappropriate. You need a proper diagnosis and a treatment plan. Do NOT settle for being sidelined by incompetent quacks who simply don't know enough to help. Keep on pushing for real answers! And go back and bug the family doctor until he coughs up a neurologist's name. Let us know, please what you learn from further referrals. If you are having problems locating someone, and don't mind revealing your general location, I can probably dig out a couple of regional medical centers that have decent neurology departments, for you. Regards
 
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An_221443 replied to RedBear2005's response:
I am in Flint, Michigan & would appreciate any advise on where to go for treatment & I can travel out of state if necesary. I have recently been diagnose with a pineal cyst 12mm in size, I have no idea if that is big or small. I just know that I have been struggeling with alot of symptoms & to be honest I am getting scared. I can feel fluid build up in my head, I have blurred & double vision which goes away if I angle my head to the left a couple of inches instead of looking straight. Memory loss, ringing in my ears, dizziness, imbalance, some days unable to close my eyes in the shower to rinse my hair without falling into the wall. Hard to look up with my eyes & to the left, tightness in my neck & unable to turn head to the left for about 2 months now & getting difficult to turn to the right, there is no pain associated with this tightnss. A new symptom as of his pat week when i do turn my head I can hear & feel grindingt the base of my skull. As the day progresses the symptoms get worse, it seems to be associated with what movement I have left in my neck, the more I attempt to move my neck the worse the symptoms are. If I lay still in bed my symptoms are similar but at a very minor level. By the end of the day it becomes hard for me to finish sentences when speaking, can't seem to remember words I should know & also difficult to write. My writing is barely legible on bad days. I can usually spell the words in my head but can't physically form them on paper. In the past I had severe migrains for years but for the last couple of years they have not been as bad. I still get headaches almost daily but the pain is not life altering like before. I only occasionally get a migraine. I have an appointment soon wih a Neurosuegeon at Henry Ford Hospital in Detroit, MI. This will be my first appt since my family doctor told me the results. I just want to know if I''m going to need surgery or if there are any other options. Can they drain this cyst? Or treat it like a tumor & shrink it? Any advise or insight is welcome & appreciated! Thanks
 
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Caprice_WebMD_Staff replied to An_221443's response:
Hello and welcome to WebMD,

I encourage you to start a new discussion on our member-created Neurology Exchange (click on that link). The members there can offer you a lot of guidance.

Once you're there, hold your cursor over the orange Post button and choose 'discussion' from the drop down menu which appears.
 
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susiemargaret replied to An_221443's response:
hello, 34437 --

if it turns out tht you want a second opinion to what the neurosurgeon says, the mayo clinic, http://www.mayoclinic.org/patientinfo/appointments.html , has a facility in minnesota. however, i'm not sure how close it is to where you are.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.


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