Friday, October 24, 2014
Tuesday, February 23, 2010 CONCERNED MOM, Community Member, asks

Q: PINEAL CYST

MY 17 YR OLD SON HAS A PINEAL CYST THAT IS 9MM HE HAS BEEN HAVING EXTREME HEADACHES, NUMBNESS IN HIS LEFT ARM,LOSS OF SHORT TERM MEMORY, SLEEPLESSNESS, BLURRED VISION AND FATIGUE. WHEN WILL A DOCTOR FINALLY HELP MY CHILD? HOW BIG DOES IT HAVE TO GROW BEFORE THEY WILL DECIDE THAT IT IS WHAT'S CAUSING HIS PROBLEMS?

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Answers (7)
Nancy Harris Bonk, Community Member
2/23/10 8:52pm

Hi Concerned Mom,

 

 Has your son seen many doctors? Neurologists, endocrinologists, and the like? What other specialists has he seen? How long has he had it? Has it been growing? Got to keep searching til you find the right doctor to help you son.

 

Do you journal his symptoms by any chance? We have a Migraine diary that may be helpful in tracking your son's symptoms, triggers and what medications help if any. You can download that information here: Your Migraine and Headache Diary.

 

 Migraine specialist may be another avenue to explore. The deal with Migraine and headache disorders all day every day - and are experts in one area. Neurologists treat so many different conditions like MS, stroke, and epilepsy it's hard for them to be experts in one area.

If your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

Good luck and let me know how it is going, ok?

Nancy 

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CONCERNED MOM, Community Member
2/24/10 9:27am

He has seen 2 Neuro surgeons and 3 neurologists. They want to do another MSI in 6 Months to see if it has grown any. He has been started on Medrin ( he takes 1 -2 at the onset of a really bad headache) and then Amitryptaline every night. But the medicine makes my son so sleepy and within the last week he has had 4 really bad episodes that have lasted anywhere from 20 minutes to 3-4 hours. he's still trying to have as normal of a life as possible but its hard when all he really wants to do is curl up in a ball.

 

i started a journal as soon as we realized what was happening and so far all we kbnow is that there is not a pattern to headaches. they are so random.

 

If you have any suggestions please let me know. I really appreciate all the help I can get.  

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God's Property, Community Member
8/10/10 10:49am

I really understand your concern. I have been living with a pineal cyst for over 3 years now. I only had one MRI done and I was told that it wasn't big enough for surgery or medicine. Right now I'm on seizure medicine because I have seizures in my sleep. The symptoms that you describe with your son are just like mine, also I experience vertigo "dizziness". Anyway, my best advice to you would be to keep trying to find another doctor because I know that no one wants to touch us. They would rather treat the symptoms rather than the cyst. You can contact Genetic and Rare Diseases Information Center to find out useful info about pineal cysts. They helped me understand the condition better. People with pineal cysts are just rare cases, but I know that you will find him help. Here's their phone # 1-888-205-2311 (12pm to 6pm on Monday through Friday)

http://raredisease.info.nih.gov/GARD

 

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Jess, Community Member
7/11/11 5:22am

I know excacly what ur talking about and what ur son is going though I am 34 with 2 children.I have  a 9 mm Pineal cyst, I found out when i became unable funtion from awfull migrains. I could not stand any light even from a cell phone. There were many other symtoms,walking to the side ,sores with no infection , ect.. That Was Nov. 2010. Since then  I have lost my job, due to constent illness. My endrocrin system is not fuctioning properly . I do not have a thyriod any more and take thyriod replacement my levels change  to the exstreme from hardly no hormones to way to much this is still happening . I have been to many doctors and test, none will even concider that the cyst could be the cause , all the test i have taken nothing eles has been found. Know i am seeing a GI doctor , my stomuch has stoped malfunctioning ,I am not digesting my food . About every 3 days I vomit and have diahria of undigested food particals. I have though every GI test out there , there was nothing , NOTHING !  found no reason why my stumock is doing this . I think the cyst is cause a domino effect on my endrocrin system . Where can i find help!! some one at least willing to concider the posibility? I pray that some one will finally help you son and I, there are to many people suffering from these so called "dont usually cause problems cyst " ! We all need to keep tring . God Bless you and your son . I know how much pain and how bad the migrains get as well as just plan havic on the body. 

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Jess, Community Member
7/11/11 5:35am

P.s  just wanted to let u know i also suffer numbness , first just in my right arm now my legs and hands and feet as well . I cannot sleep most of the time , blurred vission

memory loss that just keep getting worse   , and blurred vision , fatiue . I dont know what the doctors have been telling you , but ive been told it was just "simple migrains" " and of course depressin ". I have a question , do's ur sons eyes stay dillated at times ?

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Isa, Community Member
1/27/12 3:36pm

I just had a 10 x 17mm Pineal Cyst (more known as a Pineocytoma) removed. Most doctors will not do this surgery but I found one here in Charleston, SC that did. I'll be happy to share his informatiotion. Its sad that we are all told that there is nothing doctors can do about this when there is and there are some great doctors out there that will do this surgery and solve this problem. The first 2 doctors I saw told me that there was nothing they could do besides put me on medication and monitor it. One even told me my symptoms had nothing to do with the cyst. My doctor has never had a repeat case. Once removed its gone forever and your symptoms are gone as well! I am blessed to have found him and would not mind at all share his infomation! Just let me know.

 

Bless you,

Isa 

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Gloria lynn, Community Member
3/24/12 9:12pm

Yes thank for posting please give me info on This DR my daughter is 18 and stuttering so much Blur vision. Non stop pain in het head that gets Worst and worst everyday now her hand gets Ice blue and numb I need help she Is never pain Free Gloria

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Isa, Community Member
10/11/12 10:33am

My doctor is in Charleston, SC. His name is Dr. Sunil Patel at MUSC (Medical University of South Carlina). I hope this helps!

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Joy, Community Member
10/10/12 11:07pm

I have a pineal cyst measuring 9mm x 7.5mm x 2mm.  My neurologists says it is "inconsequential"  and that I was most likely born with it.  I have the headaches 24/7 pain down the left side of neck and shoulder, fatigue, numbness, sleep problems, nausea, problems conscentrating, memory loss.  I would love to know the name of the dr that helped you as I live in Florence, SC.

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Nancy Harris Bonk, Community Member
10/12/12 11:34am

Hi,

 

Some people may have "inconsequential" cysts, but if you are concerned about yours, please seek out a second opinion. There is nothing wrong with seeing another doctor about this issue - maybe a neurosurgeon. Follow your gut!


Keep us posted,

Nancy

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Ana 101, Community Member
9/24/13 1:27am
I had pineal cyst last year would love to share info.. Please let me know if your still interested Reply
CONCERNED MOM, Community Member
7/ 3/12 12:39pm

JUST THOUGHT I WOULD GIVE YOU ALL AN UPDATE ON MY SON...ON JUNE 3, 2010 HE HAD HIS PINEAL TUMOR REMOVED BY DR. SHAHEINIAN AT THE SKULL BASED INSTITUTE IN LA CALIFORNIA. ITS BEEN 2 YEARS AND SINCE THE TUMOR WAS REMOVED HE HASN'T HAD ANYMORE SYMPTOMS AND HE HAS GOTTEN HIS LIFE BACK TO NORMAL. HE GRADUATED HIGH SCHOOLON MAY 18TH AND WAS MARRIED TO HIS HIGH SCHOOL SWEETHEART ON JUNE 3,2012...HE SAYS HE DOESN'T WANT TO WASTE ANY TIME!!! LOL SO THANK YOU FOR ALL YOUR PRAYERS AND HELPFUL INFORMATION. GOD BLESS AND KEEP YOU ALL!

  

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tink660, Community Member
9/ 7/12 2:53pm

My son also has a pineal tumour, a germinoma and we are also seeking help from Dr. Shahinian at the Skull Base Institute.  My son has all the same symptoms as yours and is sleeping more and more.  It has been deemed inoperable here in the UK so we are trying to raise funds to get him to the Skull Base Institute.  Is your son completely well now, with no symptoms, blurred vision etc.  I pray that my son will be as lucky as yours!

 

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Greer, Community Member
3/10/14 2:27pm

My husband has been told that he has a 8 mm Pineal cyst. The doctor doesn't think my husband's extreme headaches are caused by the pineal cyst. But I do. I am in search of a specialist for pineal cyst surgery in Alabama. Please if you have any information on a doctor in Alabama who would help us figure out the best course of action to help my husband with his terriable headaches I would love to hear from you. Thanks so much. 

Greer

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Ana 101, Community Member
9/24/13 1:24am
Hello my name is Ana.. I was diaganosed with pineal cyst, two years ago.. I saw many doctors, they all said it was stressed and nothing could be done about it. I knew there was something more to it.. So I continued to research about it.. I found one amazing doctor in Los Angeles .. That was willing to se me and meet up.. We discussed the symptom I was having and agreed to perform surgery.. I thank God, For this doctor. He saved my life.. If u need more info . Feel free to message me .. Reply
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By CONCERNED MOM, Community Member— Last Modified: 03/10/14, First Published: 02/23/10