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Lily0727
12-20-2002, 01:28 PM
Does anyone know anything about a pineal cyst or it's symptoms? I was told that I have one and have probably had it since birth!!!!! My doc seems to think that it wouldn't grow but I have a very hard time trusting doctors! (Sometimes I think I know better than the docs)anyway, I was suppose to get another MRI within 3-6 months from the last one ...back in November of 2000. I totally forgot about doing that! I am paniking thinking that I am in the "danger zone" and I don't know what symptoms are of this. I don't really have headaches and if I do, they go away with IB profin. I am pretty nervous about this...Can someone give me some ease?

Dodger8
01-26-2003, 10:11 AM
Hi, my daugter had a pineal cystic lesion that grew to be 2.1 cm. She was sick and suffering with this for over 4 1/2 years. I know many, many people whom have pineal cysts and many symptoms and are receiving no medical help. All the doctors are telling them that pineal cysts do not cause symptoms. I hope and pray yours does not grow and that you do not get symptoms from it.
Please go to the following web page for more info. http://members.truepath.com/pinealcyst
Many people do have lots of symptoms from pineal cysts. I have medical journal articles with lots of information if you are interested. Or you could get on PubMed and Medline and find the articles yourself.
My email address is glorybound101@hotmail.com. If you want the articles contact me direct. I will look for your next post here.
My daughter had surgery for her pineal cystic lesion. They do not even know if they are cancer without surgery or biopsy. I have this is writing from our government in a medical journal article done at Walter Reed Army Medical Center. There is much proof they cause many, many problems.
However, there are many people whom have small ones that never have problems. What size is your cyst? Usually under 1 cm they do not recommend surgery unless they cause symptoms. My daughter had visual symptoms, nausea, vomiting, dizziness, headaches, pressure in her head and down her spine, loss of balance, etc. She suffered so much. Please do get your MRI as soon as possible.
Keep in touch.
God bless you always.

mbrown
02-09-2003, 09:26 PM
I'm a 30 year old male who has had multiple symptoms for years (not knowing what was wrong), but just recently had an MRI that showed a pineal cyst.

The symptoms are effecting almost everything I do...day to day activities, studies, recreation, work, etc.

I checked the Pineal Cyst resource site and will call the number. Thanks.

Lily0727
02-09-2003, 10:08 PM
That's funny....my doc said that it was very unlikely that I would have any symptoms. I did have another MRI and it hasn't changed positions or in size. Hmmm...not sure what to do... they sais to repeat in a year or two..can't remember, guess I need to call and check that out.

mbrown
02-11-2003, 04:27 PM
I may have had the cyst for years without knowing. I'd never had an MRI done before...only a couple CT scans that showed nothing unusual.

Lily0727
02-11-2003, 05:40 PM
Okay, I guess I need to ask....can someone die from this even if it doesn't cause symptoms? My doc seemed fairly confident that it was no big deal.

mbrown
02-13-2003, 11:08 PM
I still know almost nothing...pending further appointments.

From what I've researched on the net, it seems that these cysts are fairly common and usually cause no problems.

That doesn't comfort me much, since I've been feeling messed up for years and it seems to be getting worse. It may turn out that I've got something else in addition to the cyst.

Wish you well.

Fancy
04-14-2003, 02:45 PM
I have found a place for you to go.
Go to yahoo and type in Pineal Region Tumors.

------------------
Fancy

Fancy
04-16-2003, 10:26 AM
I have just been told that I have a pineal cyst. They are telling me that it's not causeing any pain either.

They have found som other tumors in my head.
Bone tumors growing from the bone in my brain.Hyperostosis frontalis interna. I guess thats
what causing my head pain.

I recentally found one other person that has the same diseases that I have. But doctors won't do any thing for her. I will find out Monday if their going to do surgery.

Really don't wait any loner. Go to a new doctor.

Fancy
04-16-2003, 10:30 AM
Lily0727 Yes you can die from this.
If it gets to big it will rupture.

Mine is not that big yet, but have have another rare tumor in my head. And they can't figure out which tumors causing the pain.

GET ANOTHER OPION.

------------------
Fancy

bonbonj1313
04-30-2003, 08:48 PM
Dodger8,

I posted above about an MRI that my doctor dismissed is this what you are referring to? I have numerous neurological problems and looked up some info you posted. It sounds very familiar. (I was in a condo with toxic mold for almost 3 years and had a lot of health issues.)

Also have my EEG abnormal results in front of me and it mentions how the slow wave activity focuses in the right posterior and occipital areas of the cortex. (pineal gland??)

Have vision blind spots, fatigue, etc. I also had thyroid problems. Do not get headaches but get strange feelings in my head.

If this sounds familiar I would greatly appreciate any information/advice/suggestions.

Dodger8
05-19-2003, 07:17 PM
Hello,
Yes, my daughter had all of the symptoms you mentioned and more. She had blind spots and many other visual symptoms. She had hormonal problems, including thyroid problems. Melatonin which the pineal gland produces effects all your hormones. I read this in many books. Also my 2nd cousin did research in neurology and he told me this is still being researched, but many people believe the pineal gland is the master gland. It was always believed that the pituatary gland was the master gland.
Jessica definitely had fatigue, dizziness, blurred vision, problems focusing her eyes, etc. Jessica also had an abnormal EEG, SSEP, and VEP. VEP is a visual evoked potential. This will check to see if you have nerve damage behind your eyes. Jessica did, although no one still helped her after this test. I would advise you to get a VEP - it is painless and will show if you have nerve damage behind your eyes. The SSEP is painful. I would not advise this test being done. Jessica had hearing problems as her cyst grew.
Please keep searching for help. If you are interested in medical journal articles with much info. please contact me at glorybound101@hotmail.com and give me fax # or mailing address and I will get medical journal articles to you.
I will pray for you. I hope and pray you find the help you need.
These cysts can and do cause death, but they can cause many other symptoms also. They can also be cancerous. These lesions are on the pineal gland which is in the area of the brain where the aqeduct is where the spinal fluid goes. If this blocks it will cause severe pain and death. My daughter had partial spinal fluid blockage - this caused severe pain. She was unable to lie down to sleep for months due to spinal fluid blockage. This blockage changes with positions. She had positional presyncope. When she changed positions she would about pass out. She blacked out a few times.
Also her pupils did not work. They stayed large. She could not tolerate light. Also her pupils were not centered. These symptoms were all from the pineal lesion. She had problems with blood pressure and heart, etc. This lesion is at the brain stem; this area of the brain controls your entire body!

Take care and please keep me posted.

brennema
05-29-2003, 04:26 PM
hi. i am new to this board. i just found out i have a 7 - 8 mm. cyst in my pineal gland based on results of a brain mri. i got the mri ordered by my neurologist who i began seeing because of my consistent deja vu. he told me not to worry about the cyst and that we could do a repeat mri in 6 mths. i also consulted the 3 drs whom i work for and they all agreed it wasn't a big deal. i am upset because none of them linked my deja vu to the pineal cyst. this gland obviously controls produced this feeling from my readings on the internet today. has anyone connected pineal cysts to drug abuse? i have been taking high dosages of anti-depressants for 2 yrs now per my psychiatrist. i have been up to 450 mg effexor xr along with 300 mg wellbutrin sr. i am currently down to 75 mg effexor, 300 mg wellbutrin & 30 mg celexa. i also had a severe drug abuse problem in the past 2 years. i was snorting up to 4 sonata (sleeping pills) a day, along with smoking mass amounts of marijuana, drinking, and various rx drugs. i have finally began NA and have been working really hard at being sober. i just think that the sleeping pill abuse is what has caused this cyst since the pineal gland controls the melatonin production. and i also think that since i have been on ssri's for so long, that this is probably another reason, since melatonin is from seratonin? if anyone has advice pls reply or email me.

TekTeach
06-04-2003, 07:07 PM
Hi -- am a 53 yr old woman in good health who has just been diagnosed with a 7 mm pineal cyst. Needless to say, I'm scared! can't find much info but found
healthboard.com. Any info you can share would be appreciated. TekTeach@optonline.net Kate

Dodger8
06-05-2003, 10:29 PM
Hello,
I am responding to your message about your pineal cyst possibly coming from drug use. My daughter at the age of 9 had a pineal cyst and many, many severe symptoms. She never used illegal drugs or took much medication in the past.
These pineal cysts do cause major problems. Doctors do not acknowledge this. If anyone is interested in copies of medical journal articles please contact me either on a message board or my email at glorybound101@hotmail.com. I would be happy to mail you copies or fax them to you.
I only want to help. My daughter suffered for 4 1/2 years with a pineal cystic lesion. It started out at 1.6 cm and grew to 2.1 cm in 2 years time. The first 2 years she did not have an MRI.
These cause many serious problems. They can cause spinal fluid blockage. They cause seizures, headaches, visual problems, nausea, vomiting, dizziness, endocrine problems, cardiac problems, numbness, tingling, eyes crossing, uncontrollable eye movements, etc. They will also cause problems with your immune system.
Other countries are operating on people for these lesions. The pineal gland is right at your brain stem. This controls every part of your body, breathing, swallowing, bladder, etc.
If interested in the articles please let me know.
Love in Christ,
Cheryl

saxgirl
06-07-2003, 01:52 AM
I was told in passing that I have one of these (~1cm) & it's a variation of normal & doesn't warrant MRI. This was a 1st & 2nd Kaiser opinion...what's the general consensus among non-Kaiser neuros?

dlhowell998
06-09-2003, 10:58 PM
My now 15 month old daughter was diagnosed with a pineal cyst by CT scan which was done for other reasons a few months ago. Pineal cysts are VERY common - up to 40 % of people have them on routine autopsies, and a substantial percentage of people have them found on CT or MRI studies done for other reasons. It is very RARE for them to be associated with any symptoms. No physician in their right mind would recommend having something done about a small cyst in the brain because you would have to have some form of BRAIN SURGERY to do this! There are always significant risks with any surgical procedure, especially with such important and sensitive areas. There are less than 100 people in the world who have had significant symptoms related to pineal gland cysts. If the physicians don't believe that the cyst is related to the headaches and other symptoms, they're probably right. Obviously having something in your brain can be terrifying - and I see brain tumors in children all the time - but if the appropriate studies are being done, and follow-up is happening with your physician, you will probably not have any further problems related to these cysts. If the cyst is truly the cause of the problems, there will almost always be other findings on the imaging studies.

[This message has been edited by dlhowell998 (edited 06-13-2003).]

Dodger8
06-14-2003, 02:22 AM
This is definitely NOT true! My daughter suffered for 4 1/2 years with a pineal cyst. She had many, many severe symptoms and no doctor would help her!!!! She finally had surgery and her symptoms are gone!!

She had severe pressure pain in her head. She had endocrine problems, cardiac problems, etc. She had numbness, tingling, nausea, vomiting, visual symptoms, etc. Many, many people are suffering with these and being denied medical help!

Just because no doctor helps these people does not make their pain and suffering any less real.

My daughter could not eat anything except baked potatoes or she would vomit. She could not lay down to sleep for months. She had to sit up straight to sleep or she would have excruciating throbbing headaches due to partial spinal fluid blockage. She was left to suffer for years with no medical help! These pineal cysts DO cause severe problems for many people, although no one is willing to help them! Her face was always swollen and her headaches became severe and constant! It was a nightmare! No one cared or attempted to help in any way except by offering pain medication.

When someone in the medical profession got involved they immediately did surgery!! Someone got involved (a distant relative) who knew all the symptoms this lesion would cause (he did research in neurology). He knew her symptoms before I told him. This area of the brain controls so much of the body. There is no extra room in this area and there is definitely no room for a brain lesion to be growing.

When you move these lesions most likely move and hit other areas and cause different symptoms. These lesions are only connected at the top. My daughter had presyncope. She would black out when changing positions at times. She always got dizzy and felt like passing out when changing positions. Her blood pressure would drop and her heart would beat really fast from this. Still she was left to suffer with no help.

Her 2.1 cm cyst was against the tectum for years and no one would help. This caused her double vision, crossed eyes, etc. No doctor would still help! She was very sensitive to light. She had trouble focusing her eyes to read. She had severe pain behind her eyes. She had an abnormal VEP (visual evoked potential) which proved she had nerve damage behind her eyes from the cyst. No one would still acknowledge the problem. She had an abnormal EEG. No one would still help!!

It seems to me that doctors are just allowing people to suffer with no help!!! How cruel and uncaring this seems to be! There are many children suffering also. Just because doctors may have only done surgery on 100 or so people with pineal cysts - this does not mean there aren't many others suffering and being denied help!! For some reason they are allowing people to suffer without medical help. This is happening to so many people! I never thought this would be possible in the United States.

The risks of this surgery were really not very high. We were told that my daughter had a 96% chance of surgery being successful with no complications. Most all of her pain and symptoms are gone!!!

I hope this is helpful. I know 3 others who have had
a pineal cyst removed too. They are all fine and their symptoms are mostly gone too. My daughter woke up immediately after surgery with all her pressure pain in her head gone. The pain down her spine and throughout her body was immediately gone!! Her vomiting was gone within a week.

This area of the brain controls much of the body therefore it causes severe problems when there is a lesion in the pineal area.

There is much medical proof of this. There are many medical journal articles proving this. Walter Reed Army Medical Center (our government) did research and found that they caused severe problems and felt they should be removed. They did surgery on pineal cysts as small as 5 mm. Other countries like Japan, Germany, and Italy are doing surgery for these brain lesions. Also, NYU (Dr.Wisoff and Dr. Epstein) did research and stated they sometimes need to be removed and they do cause partial spinal fluid blockage, which eventually leads to complete blockage. There is a lot of medical information available.

If left untreated they could cause death. They will eventually cause spinal fluid blockage. Also, there are 3 primary types of pineal brain tumors that are completely cystic! These could be cancerous. There is no way to know without biopsy or surgery.

Honestly I don't understand why doctors refuse to help all those suffering. Just because doctors tell us the cyst is not the problem, this does not make it so. They are telling hundreds of people this. They all have the same type of pineal lesion and the same symptoms. These symptoms are the same symptoms associated with pineal tumors. Just because the lesion is cystic does not make their symptoms any less severe or real. Just because their lesion is cystic should they be denied medical help and left to suffer?

This is cruel!

[This message has been edited by Dodger8 (edited 06-14-2003).]

Dodger8
06-21-2003, 05:51 PM
Hey, I'm Jess using my mom's user name. Just wanted to say that I had this surgery and am doing better now. There is actually a 98% chance that this surgery will go perfectly fine!

dlhowell998
06-23-2003, 01:46 PM
I was not trying to get anyone upset.

I am very sorry that your daughter had such severe symptoms. Most physicians today would agree that people with larger cysts (such as hers at 2.1 cm) that occur with symptoms (which can be vague or much more severe as hers) may benefit from surgery. Most of the newer surgical approaches are less invasive but their efficacy has not yet been proven.

Those who have had the operations have had symptoms. The majority of those who have had symptoms have had other findings on their MRIs, such as hydrocephalus or aqueductal stenosis. Hydrocephalus would definitely push someone towards operating sooner than later. The hydrocephalus can be intermittent - the pineal cyst can act as a ball valve, trapping fluid intermittently, or can stay fixed, leading to progressive hydrocephalus.

No surgery is without risk. I see children almost every day that have had surgery for brain tumors (not just cysts), and the effects can be devastating.

It is true that there are tumors that can be present in the pineal gland. Certain types of cystic tumors are more common in certain age ranges than others. Children are less commonly diagnosed with pineal cysts, but also tend to have some of the cystic tumors present. Usually there are characteristics seen on MRI which would make someone more suspicious that there is a true tumor present and not just a cyst, but this is not a perfect system. That is why follow-up MRI studies are recommended, to check for growth and change of the cyst. If the cyst grows, then the removal would be more necessary to prove that it is in fact a benign cyst.

I am personally very concerned about my own daughter, and have done quite a bit of reading in this area and spoken with several specialists. All agree that severe symptoms that are "typical" as your daughter's were or cysts that grow or change or look suspicious on MRI should be more closely examined and/or removed. However, for those that are found "incidentally" or without symptomatology that fits the lesion should merely be monitored.

It is very unusual for a 1 year old to have a pineal cyst diagnosed. My daughter will be closely monitored, and unfortunately risk having sedation fairly frequently for the MRIs to be done. If she does develop a pineoblastoma or pineocytoma or germ cell tumor, I will be devastated. A pineal cyst is the best I can hope for at this time.

She is in good company with the other 5-40% of the population that has a pineal cyst.

dlhowell998
06-23-2003, 01:47 PM
Sorry - sent the message twice by accident.

[This message has been edited by dlhowell998 (edited 06-23-2003).]

monee101
07-06-2003, 02:23 PM
Just have to throw in my 2 cents...

My daughter is 9 and was diagnosed with a pineal cyst several years ago, she also has high functioning autism and endocrine problems. Her cyst is "larger than average" so she was followed by a team at the brain tumor clinic in Atlanta for a few years. She doesn't appear to have any other symptoms from the cyst but she has a difficult time expressing herself and a high pain tolerance, so I am not sure she would tell us. Our doctors agree that the cyst is the cause of the endocrine problems. I have found some evidence on the net that pineal gland malfunction could be related to autism. I believe that in the years to come doctors will find more evidence that these cysts can and do cause many problems.

brandy
07-06-2003, 02:25 PM
What treatment options are out there? Surgery?

brandy
07-06-2003, 02:29 PM
Originally posted by brandy:
What treatment options are out there? Surgery?

Blondee
07-09-2003, 06:01 PM
Hello,
I was wondering if anyone could perhaps be of any help.
I am 38 years old and have been having headaches about 1 year ago and the Dr. I was seeing at the time ordered an MRI that came out normal. The doctor wrote it off saying, I was just a migraine suffer.
Now almost a little over a year later, the headaches have gotten worse. I have changed doctors, and with that, the new Dr. ordered a new MRI. This MRI shows I have pineal cyst 1.9 cm. The Neuro surgeon I’ve seen said he feels I need surgery do to the symptoms I’ve had and the size and the fact that it’s grown to the size it is in such a short time, however he said he doesn’t have much experience with this type of problem and is looking into finding someone who has had experience in this field. As I understand having a pineal cyst at my age is rare and mostly found in younger children.
Does anyone know anymore about this and might direct me to someone with some experience in this?
Help…
Thanks,
CCA

dlhowell998
07-14-2003, 10:40 AM
Actually, pineal cysts are much more common in adults than in children. The incidence increases with age, as the natural course of some of them is to grow to a more noticeable size. If yours has changed significantly from scan to scan, then perhaps it does need to be removed. If your neurosurgeon is not familiar with the procedure, though, I would not let him do it. There have been more recent reports of endoscopic removal of these cysts which may have less of a problem/side effects, but should only be done by someone with significant experience. You can always request the neurosurgeon to refer you to someone else for a second opinion. I would strongly urge you to do this. Don't let him operate if he is not familiar with the procedure that needs to be done. Even though the risks are small, the risks are much greater in someone who is not used to performing the operation in that area of the brain. Good luck!

Ted
07-14-2003, 02:48 PM
I'm a 43 year old male, who was diagnosed with a Pineal Tumor (1.5cm) just a year ago 9 July 2002 on my retirement physical from the Marine Corps. My symptoms weren't that bad: ringing in the ears and a very slight balance problem. In hindsight I was having headaches, but attributed that to working in the Pentagon and commuting. Anyways, I had a biopsy done, the results came back as non-diagnostic. I pressed for a second opinion and went out on my own for other opinions. My military NS wanted to wait and see, the other 3 opinions was to remove it. Keep in mind that this is because we all think it is a tumor from the MRIs.

Well, I got the best NS, Dr Friedman from Duke, to take my case. I had the "tumor" removed in 18 November 2003. The initial biopsy of the resection came back as a low grade tumor. Unbeknownst to me, they sent it out for a second opinion, which came back as a cyst. There is a whole lot more to the story... But I am doing well, healthy, transitioned out of the Marine Corps 1 July 2003.

I guess my point is, that you can't be sure of what it is until you have gotten numerous opinions and have had it tested is some way, biopsy or resection (unless you are unfortunate enough to have a fast growing tumor).

I am somewhat glad that they thought it was a tumor to start with, because if they thought it was a cyst, they would have never taken it out. With the way, I am I would not be able to live knowing that I had something like that in my head and most-likely my symptoms or attitude would have gotten worse.

I recommend that you get a second opinion or more (not too many). Alot of NS will give a second opinion from looking at your MRIs. I mailed my MRIs to Duke and NYU to get their opinions.

There is an MSN Group that is focused on Pineal Tumors that may have information that you are interested in.

Best of luck,
Ted

Ted
07-14-2003, 02:50 PM
Oops, it was removed 18 November 2002. Just in time for Thanksgiving!

Blondee
07-21-2003, 11:49 AM
Thank you for the info and input. I am now currently having a Dr. from UCLA study my results and am awaiting an appointment from him. They feel they will be able to help.
They are mostly concerned about it being the size (1.9cm) it is and for such a short time ( a little over a year. ) As I understand it, they have not ruled out the chance of it being a tumor at this point.

Ted, when you had your surgery how long was your recovery time? And what type of surgery did you have??? They have discussed with me 3 different types.

Thank you,

CCA

Ted
07-22-2003, 07:54 AM
My recovery wasn't that bad. I had surgery on Monday, was walking around on Tuesday a bit. On Wednesday, the medication was getting to me (too much of a good thing (drugs) can be bad...percocet & morphine make you constipated, not a good feeling). Friday, I was discharged and stayed locally in a hotel and went home on Monday after getting the stitches out. For 6 weeks I wasn't suppose to drive and was to take it easy. Of course after a few weeks, I was feeling pretty good and started doing things (driving and more activity), that is when I started getting double vision, which would only last about a half a day. So, if you take it real easy during the first 6 weeks, you should be good to go.

They went through the back of my head. I believe it is called the third ventricle? Do a search on Google for "A ‘Rational’ strategy for the Management of Pineal Tumors", it is a power point presentation on pineal tumor treatments from the Univ of Utah.

Best of luck,
Ted

Blondee
07-24-2003, 11:39 AM
Hello Ted,

Meet with the NS at UCLA and he felt that at this point it looks like a possible tumor and not a cyst, and feels that it is also benign. (not sure how he'd know without doing a biopsy)

Doesn't think the headaches are from the tumor/cyst and wants to wait and keep an eye on it and see if any other symtoms araise. It's now at 1.9cm
This has been very nerve racking and he has the attitude of "let's wait and see" hasn't made me feel to warm and fuzzy either.
Looks like I'm off for a second opinion.

CCA


[This message has been edited by Blondee (edited 07-24-2003).]

Ted
07-24-2003, 12:45 PM
Here is a link to another Pineal Tumor Support Group on MSN. My journey through this ordeal is documented under "Ted" on the message board, http://groups.msn.com/PinealTumor

My experience seems to be very similiar to yours. Minor symptoms of ringing in the ears and a balance problem, had and MRI done, 1.5 cm mass found in the pineal region. Lumbar puncture done looking for other markers. Brain and spinal MRI's with and without contrast looking for other markers. Conclusion at that point, benign pineal tumor. Opted for a biopsy, biopsy came back non-diagnostic (what fun!?!). Then pressed my NS for a second opinion. Got one referral from him and went out on my own and got 2 more. My NS wanted to take the wait and see approach, the other 3 recommend resections. The simple reason was tumors tend to grow, so sooner or later something will need to be done. As you know, I opted for resection and am doing great. There is a lot of turmoil that happened in the above.

Did you do a search for that presentation?

Go to the MSN Pineal Tumor group, I have some lessons learned and there are other experiences on there. Also, John Hopkins has a posting for Pineal Tumors.

Go get those other opinions!

Semper Fi,
Ted

Blondee
07-25-2003, 09:17 PM
Hello Ted,
Thanks for all the info. It really makes me feel better knowing someone out there has been through the same experience.
I went to the MSN chat you told me about and found a lot of info there. I signed up to join the chats.
I go by Blondeeca2. Perhaps I will see you there.

I talked to my NS today after he has had time to review my films. He told me he wants me to have another MRI in 5 months to monitor the growth and wait until then. He said after looking at my films that he can see were some of the brain tissue is being pressed on from the tumor, and feels some of the headaches can be a result from that but,...he still wants to wait and not rush into this. I still have a second opinion on the 18th of Aug. However the NS at UCLA said this is his specialty and even if I went out for a second opinion, I would end up being referred back to him.
So looks like I will have to wait and see.

Thank you again,

CCA

Ted
07-27-2003, 08:47 AM
Blondee,

When I asked my Navy NS for a second opinion, he said "hey, all the NS on staff reviewed your case, so it's like you already got multiple opinions."

When you go for your second opinion, don't tell the NS anything that your first NS said. I hope that these two NS aren't too close. As you can read from my jount. You should maintain your own library of MRIs and CT scans. Your NS can order 2 copies, plus you can pay for extra ones (there not too expensive). Then you can send your MRIs out to other NS that you may have researched. In my case, I went on-line and either e-mailed or filled out an on-line questionnaire for the Brain Tumor Center at Duke and NYU. The NS there were both willing to look at my films and anyother info (my biopsy slides) and give me an opinion at no cost. From what I have read a lot of NS will do that. I am not familiar with NS on the West Coast, but I am sure you could research some Brain Tumor Centers over on the left coast and request an opinion.

Again, if it is thought to be a tumor, you probably want to consider resection...(I know not a pleasant thought)...because tumors grow and you are pretty young to have that going on.

Waiting another 5 months for another MRI is not a bad idea, but if your symptoms get worse move it up.

Keep in touch,
Ted

Blondee
07-27-2003, 08:33 PM
Hi Ted,

Thanks for the info. Sounds like you had/have a really great NS. Perhaps I should send Dr. Friedman a copy of my MRI's and see what he thinks?

Could you please provide me with his info so that I can start working on this as soon as possible.

My headaches are not letting up but I doubt at this point they will. One thing that is new is that I'm starting to have a lot of neck pain that's going into my back and shoulder and head. It's been going a week and a half now and I'm not sure if it's part of the tumor or just me??


Thanks for all the help you've been and your input.
It's hard to talk to others that have not walked the path.

Blondee

[This message has been edited by Blondee (edited 07-28-2003).]

Dodger8
09-23-2003, 09:08 PM
Please let me know if you found help for your pineal cyst. My daughter had a 2.1 cm pineal cyst. She finally had surgery after 4 1/2 years of suffering.
Please go to PubMed and do a search for pineal cyst in the medical journals. There is much research and info available.
I have contact with over 100 people with pineal cystic lesions. Most cannot find medical help.
Please let me know how you are doing.
Cheryl

monee101
10-16-2003, 10:09 PM
I have been doing a little research on the pineal gland since the school has been complaining that my daughter cannot stay awake... she's getting 10 hours of sleep at night, but it's next to impossible to wake her. Anyway, I ended up stumbling upon another issue she has lately and that is pigment changes. One leg is covered in what appears to be both excessive pigment and loss of pigment. It appears this could be related to the pineal gland too, so I was curious if any of you have experienced pigment changes...

 
 
 




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