sucess rate for pineal cyst removal

[jess755]

WHAT IS THE SUCESS RATE OF BOTH REMOVAL OF A PINEAL CYST AND DRAINING THE CYST?  ALSO WHAT DO YOU ASK THE NS TO SEE THAT HE IS THE MOST QUALIFIED TO DO THE SURGERY.  ARE THERE ANY OTHER OPTIONS TO TREAT THE CYST WITHOUT SURGERY?  WHAT IS THE SURVIVAL RATE BOTH SHORT TERM AND LONG TERM?

[onedoseatatime]

HI. I had my surgery done 3 weeks ago at MGH. Here is a link to my blog www.mindyspinealglandtumor.wordpress.com

I am recovering great and this was the best decision of my life! All symptoms related to cyst are now gone! I wonder why MGH said they would not do your surgery?  I have nothing but amazing things to say about the hospital, the staff and my entire procedure. Hope you find relief soon!

Mindy

[onedoseatatime]

Hey there,

I am a 40 year old mom of 2 who also has a symptomatic pineal lesion "mass, tumor, cyst" whatever they want to call it. I have been suffering debilitating symptoms such as non stop pressure headache, vertigo, nausea, fatigue, blurred mental state, vision issues etc and have been to every specialist possible. I was extremely healthy and active prior to this cyst finding on many MRI's, After a year and half of constant pressuring and persistance, I am having endoscopic surgery for removal of my 12mm pineal gland cyst this October at MGH in Boston. I can not live with this compromised quality of life anymore nor will I entertain the idea of spending the rest of my life in this "twilight zone" phase, missing out on my boys growing up. Do further research on Dr.Curry at Mass General Hospital. He is a very compassionate and skilled neurosurgeon who is willing to help me get my quality of life back. Good luck to you and do not give up! We as sufferers of this misdiagnosed neurological disorder have to keep fighting for the right treatment! I am hoping to blog about my surgery and recovery to share information with other sufferers of this rare disorder.

[Sandyruiz1962]

Please friend me on fb.  I agree that this is no life! I have been dealing with issues for years but last 2 have really been the worst. I say I'm existing not living.  I am so tired of being treated like I'm making it all up even though the tests show different issues I'm having.  I am still searching for a neurologist that will actually listen to me. My prayers are with you as you go through all this.  Sandra Darlene Ruiz cedar Rapids Iowa

[GypsyD]

me too been getting dizzier through the past few yrs now they thought I had a stroke but its a 7mm pineal cyst

[StefJacobson0215]

When are you scheduled for surgery? Mass General said no to doing my surgery. I had it done at Skull Base Institute in CA 2/11/15.

[SedonaMom]

Thank you for your post, did you have the shunt removed after the removal of the pineal cyst.  We are being told if the shunt is put in, it is for life.

My daughter has a 1.65 cm cyst, we have been to so many, many doctors, including Mayo Clinic, all not wanting to do the surgery, she has been out of work for several months.

Glad you are doing well, that gives us hope, how did you finally get them to operate, did you have to another area of the country??

SedonaMom

[MamaMoo3]

I have a pineal gland cyst      -- 1 cm pineal cyst.  I think doctors believe if they tell me it's okay that i'll think it is okay.  I recently had a doctor tell me I was born with it, but my headaches and pain didn't start until my mid-20s.
My level of being comfortable is not as it was, just because it is my brain, so I was considering looking for other opinion or someone else to watch it.  I don't want to be needlessly in agony.  What types of medical areas of expertise should I look at?

[Helarm]

Sandy please leave the address of the doctor who performed the operation ...

[lac259]

im a 17 year old girl who was diagnosed with a 35mm cyst3 years ago and have lived with headaches off and on. 3 years later i it has finally got to the point wher i can no longer stand the pain and so i am giving up all my sports to have the op. if i had it my way and could i would live with the pain and just life wiith the cyst just because i dont like the idea of them cutting on my brain.

[sandy334]

Well it was about 7mm when they discovered it but by April 08 it had grown 4 times that size and that was after having it aspirated 3 times. My case was extreamly rare as they do not usually grow that big or that quick for that matter. I guess i was just unlucky. I had a check up today and they told me it was 98% gone which is great news they said it will never be back

[redkim]

I am wondering this too.  I had an MRI done to check on my Chiari and the doctor found a 11MM Pineal Cyst.  He said that we would monitor the Pineal Cyst and said I am asymtomatic with that, but now that I know the size I am a little more concerned!  I am only 26 and would like to know what to expect...

[missys455]

How large is your pineal cyst?  What symptoms were you having?  I have a 6mm cyst and severe head pain and pressure.

[sandy334]

I have had both procedures done the drainage was done 3 times with no sucess and then in the end I had to have the cyst removed completly. I also had a shunt inserted to deal with Hydrochepallus that had occured from the cyst. I got 3 opinions on the last operation as I was told it was very risky. I was also told I would be out of action for a long time but I suprised everyone by getting out of hospital 4 days after the surgery and back to work 6 weeks later. My NS told me that it is only in extreamly rare cases would they remove these type of cysts but because I had no quality of life for 6 years they thought it best to try the op and thank god it was a sucsess. The only time survival rate was ever discusses with me was then I was having the major op they told me all sorts of stats relating to not waking up or being paralised or blind after surgery but none of this affected me thank god. The drainage in my opinion and it is what I always felt from my doctor was a way of avoiding the removal of the cyst at all costs as it is such a big op, I was always aware that the chances of me having to have the big op were very high and accepted this from very early on. I hope this helps!!!

[GypsyD]

I have a 7mm pineal  cyst,they thought I had a stroke 3 months ago,slurred speech headaches and dizzy,I am still having those symptoms,mostly tired and dizzy and feeling a lot of dread.Is there any  hope of at least loosing the dizziness?