It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Brain & Nervous System Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-09-2005, 09:21 AM   #1
Newbie
(female)
 
Join Date: Feb 2005
Posts: 6
lovemyrinny HB User
Exclamation Adult with Choroid Plexus Cysts hoping to talk to others

I am a patient with a non-functioning pituitary brain tumor which was discovered in 11/04 due to severe headaches. I am a polycystic kidney disease patient as well and I had the MRI based on the propensity for brain aneurysms in PKD patients.

My most recent MRI showed a cyst in the pineal region as well as the presence of bilateral choroid plexus cysts. I just saw the PA for my neurosurgeon and he says that he plans to monitor me with another MRI in October, although he had never seen a case of choroid plexus cysts at all (and never heard of a case in an adult). He is more concerned with the pituitary tumor. The literature I found seems to always refer to these cysts in children found through ultrasound of the mother. I am seeking a second opinion at Johns Hopkins on the 17th of March.

I want to be certain that the presence of choroid plexus cysts and a pineal cyst with a pituitary adenoma and polycystic kidney disease are not of special concern.

I have been completely unable to find another adult with choroid plexus cysts. IF YOU ARE A PATIENT WITH CHOROID PLEXUS CYSTS, PLEASE RESPOND!

Thank you and I truly hope to connect with others through this message board.

Last edited by lovemyrinny; 03-09-2005 at 09:53 AM.

 
Old 03-09-2005, 08:28 PM   #2
Inactive
 
Join Date: Sep 2004
Posts: 285
heart44 HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Quote:
Originally Posted by lovemyrinny
.... although he had never seen a case of choroid plexus cysts at all (and never heard of a case in an adult).
I have been completely unable to find another adult with choroid plexus cysts. IF YOU ARE A PATIENT WITH CHOROID PLEXUS CYSTS, PLEASE RESPOND!
Well, you found another one! My husband took statins [cholesterol lowering drugs] for eight years. Almost 2 years ago I noticed cognitive decline. Brain MRI results: bilateral choroid plexus cysts and minimal to mild sinusitis. The Neurologist did not seem concerned. I was not able to find any literature either [as pertains to adults]. We finally had a PET scan of the brain to determine if Alzheimer's was the cause of his cognitive decline. Results of PET were normal. Statins can cause cognitive problems although most doctors today say NO. We have an appt with the Neurologist in a few weeks. Will be interesting to see what he has to say. He was thoroughly convinced hubby had Alz..... was already to start meds.

 
Sponsors Lightbulb
   
Old 03-10-2005, 06:15 AM   #3
Newbie
(female)
 
Join Date: Feb 2005
Posts: 6
lovemyrinny HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Nice to hear from you, thank you for responding! Why did your husband have the initial MRI...only because of the cognitive decline? The last neuro I saw was the PA for the neurosurgeon....I don't think he would have mentioned the bilateral choroid plexus cysts if I had not asked about them. Did he ever have a second opinion? Were the cysts noted as an incidental finding? Mine were. I found two articles in the literature that mention (barely) that choroid plexus cysts can be related to polycystic kidney disease (which I also have). My nephrologist had never even heard of choroid plexus cysts though. Did his MRI results show the size of the cysts? Does he have headaches or other symptoms?

 
Old 03-10-2005, 04:46 PM   #4
Inactive
 
Join Date: Sep 2004
Posts: 285
heart44 HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Re: Why did your husband have the initial MRI...
only because of the cognitive decline?

YES - Alzheimer's type dementia was suspected.
We asked the signifigance of Choroid Plexus Cyst and Neuro
said nothing to worry about.

Neuropsychology tests indicated Alzheimer's type dementia.

Re: Did he ever have a second opinion?
NO, but did have a PET scan to rule out Alzheimer.
PET is normal.
Other tests: carotid ultrasound [normal], cardiac echo [normal],
glucose blood test [normal]

Re: Were the cysts noted as an incidental finding?
Re: Did his MRI results show the size of the cysts?

YES - Incidental Finding of Bilateral Choroid Plexus Cysts.
Mild ventricular prominence. Nonagressive approximately 1 cm each choroid plexus cyst in atrium of both lateral ventricles.

Also: nonagressive high T1 signal structure is noted superficial to outer table of skull in posterior parietal region which could be an osteoma or a fatty lesion such as lipoma.

Re: Does he have headaches or other symptoms?
YES - He does get a mild headache over his right eye. He was diagnosed with Amaurosis Fugax in his right also. This condition occurs in only one eye.
Description: Like a veil or cloud is in your visual field. Not there all the time.

We've seen several different doctors over the past several months.
Since we seem to be the only two with this problems,
we could share info at:[ please carefully review the posting rules - no emails ]

Last edited by moderator2; 03-10-2005 at 04:50 PM. Reason: please carefully review the posting rules - no emails

 
Old 03-11-2005, 08:18 AM   #5
Newbie
(female)
 
Join Date: Feb 2005
Posts: 6
lovemyrinny HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Since the PET scan was taken to rule our Alzheimers and the scan was normal, does he not have Alzheimers? What did the doctors think caused these choroid plexus cysts? Did his physician say if the cysts would ever be a future concern, and if so, why?

 
Old 03-17-2005, 06:27 PM   #6
Newbie
(female)
 
Join Date: Mar 2005
Posts: 3
lightheart HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

undefined
Quote:
Originally Posted by lovemyrinny
I am a patient with a non-functioning pituitary brain tumor which was discovered in 11/04 due to severe headaches. I am a polycystic kidney disease patient as well and I had the MRI based on the propensity for brain aneurysms in PKD patients.

My most recent MRI showed a cyst in the pineal region as well as the presence of bilateral choroid plexus cysts. I just saw the PA for my neurosurgeon and he says that he plans to monitor me with another MRI in October, although he had never seen a case of choroid plexus cysts at all (and never heard of a case in an adult). He is more concerned with the pituitary tumor. The literature I found seems to always refer to these cysts in children found through ultrasound of the mother. I am seeking a second opinion at Johns Hopkins on the 17th of March.

I want to be certain that the presence of choroid plexus cysts and a pineal cyst with a pituitary adenoma and polycystic kidney disease are not of special concern.

I have been completely unable to find another adult with choroid plexus cysts. IF YOU ARE A PATIENT WITH CHOROID PLEXUS CYSTS, PLEASE RESPOND!

Thank you and I truly hope to connect with others through this message board.

 
Old 03-17-2005, 10:22 PM   #7
Inactive
 
Join Date: Sep 2004
Posts: 285
heart44 HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Quote:
Originally Posted by lovemyrinny
Since the PET scan was taken to rule our Alzheimers and the scan was normal, does he not have Alzheimers? What did the doctors think caused these choroid plexus cysts? Did his physician say if the cysts would ever be a future concern, and if so, why?
Sorry for the delay response. We have not been back to the Neurologist yet, but he did call and say PET was normal. We also got a copy of the PET report which basically states there is "no sign of Alzheimer's". I can copy the exact wording if that would help you with the specifics. We did not question the Neurologist further about the choroid plexus cysts and since I could not find any info about how they pertain to adults, did not push for more info. We are not to impressed with this guy in the first place. He barely looked at the MRI's; relied solely on the report from the technician that read the films. We went through several weeks of gut wrenching agony when neuropsychology testing indicated my husband was in the early stages of Alzheimer. Pushing for more tests was the only way to determine if his symptoms were really Alzheimer OR the nasty side effects from statins.

The medical community is stating that statins are well tolerated by the majority, but there is growing evidence that this is absolutely FALSE.

Doctors are refusing to believe their patients when they complain of all the various statin side effects. Some get extremely defensive and down right arrogent. One friend's cardiologist told her to find another doctor, that all of her complaints were in her head. It's really getting quite traumatic for many statin sufferers.

Anyhow, it will be very interesting to see what the Neurologist has to say, since he was all ready to start Alzheimer meds BEFORE the PET scan. We see him in 2 weeks.

 
Old 03-17-2005, 10:24 PM   #8
Inactive
 
Join Date: Sep 2004
Posts: 285
heart44 HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Quote:
Originally Posted by lightheart
undefined
Hi Lighthearted. Not sure what "undefined" means?

 
Old 03-22-2005, 06:13 PM   #9
Newbie
(female)
 
Join Date: Mar 2005
Posts: 3
lightheart HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Hi. I too was recently diagnosed with multiple Choroid Plexus Cysts. For the past 2-3 weeks, I have been having ongoing problems with various vague pains in my head ranging from fleeting pain to a feeling of intense cold and decreased sensation in pinpoint areas of my head. I have also experienced intense sensations of cold on both arms, especially my left arm and left side of my body. My first visit to the doctor was at the E.R. where they performed a CT scan as well as blood work. Nothing was found and I was referred to an Internist who had me get additional bloodwork and an MRI. The bloodwork came back within normal limits, but the MRI revealed multiple cysts, 6mm in size. After conferring with a local neurosurgeon, my internist told me that the cysts are quite normal and he did not believe that they had anything to do with my recent symptomology. I was also told that although the cysts are likely to be benign, and probably something I have had since birth, it is also possible that they may grow and worst case scenario, burst. This would lead to "stroke-like" symptoms. I was told that in order to keep a close eye on the cysts, I would have to get an MRI every 3 months for an indefinite period of time, until the doctors are sure that the cysts are not growing. I was referred to a neurosurgeon for a second opinion, and I am in the process of scheduling an appointment with him this week. I have many questions for the doctor that have yet to be answered to my satisfaction. I am hoping that this new doctor will be able to shed more light into what is going on with me, as my symptoms continue and they are quite troubling to me.

 
Old 03-22-2005, 07:38 PM   #10
Inactive
 
Join Date: Sep 2004
Posts: 285
heart44 HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Quote:
Originally Posted by lightheart
I have many questions for the doctor that have yet to be answered to my satisfaction.
Same here. It appears all 3 of our doctors [on this thread] don't seem too concerned about something that might be serious. My husbands cysts are 1cm. His symptoms are dull headache over his right eye, usually later in the evening. Possibility of Amaurosis Fugax. Could be eye fatigue.

 
Old 03-23-2005, 04:16 PM   #11
Newbie
(female)
 
Join Date: Mar 2005
Posts: 3
lightheart HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Thanks for your reply. Have either of you noticed either the onset of or an exacerbation of symptoms after eating certain foods containing aspartame (or an aspartame by-product) or foods containing MSG? I don't know if it is a coincidence or not but I noticed an onset of symptoms while I was on a weight-reducing shake that contains aspartame. I had been using the shake off and on for over a year and would periodically have very fleeting symptoms while using the shake- but I never really made a connection between the two. The most recent time that I began using it, I began to experience worse symptoms that lasted several days- it was then that I began doing research about aspartame ( I always wondered why Aspartame is written in bold on a products' ingredients' list.) After I did some research on my own about aspartame over the internet, I questioned my doctor about it. He said that this is a controversal subject and that although he was aware that patients have alleged that there is a connection to their physical complaints and their ingestion of aspartame, that there is no scientific basis for it (although he suggested I stay away from any aspartame-containing product just in case).

 
Old 03-23-2005, 04:56 PM   #12
Inactive
 
Join Date: Sep 2004
Posts: 285
heart44 HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

Quote:
Originally Posted by lightheart
Have either of you noticed either the onset of or an exacerbation of symptoms after eating certain foods containing aspartame (or an aspartame by-product) or foods containing MSG?
We don't use aspartame or MSG, but we do use Splenda. There appears to be negative press about Splenda too. I did not consider there might be a link between my husband's headaches and Splenda, but will do some research. Thanks for the tip.

 
Old 06-05-2007, 08:39 AM   #13
Newbie
(male)
 
Join Date: Jun 2007
Location: Martintown, Ontario, Canada
Posts: 2
WinDancer HB User
Re: Adult with Choroid Plexus Cysts hoping to talk to others

I am a 47 year old male in good physical condition, healthy lifestyle. I have suffered incurable headaches for many years now. I recently underwent a CT scan that revealed bilateral choroid plexus cysts: left is 2.7cm x 1.4cm and the right is 2.1cm x 1.5cm. I have a copy of the CT scan and they appear to be touching the walls of the ventricles. I suffer severe heaches almost daily, which becomes very debilitating in a functional world. Symptoms include nausea, short term memory problems and cognitive decline, bouts of dizziness and brief disturbances in general gait BESIDES the obvious pain associated with the headache.
I am having problems finding meaningful information relating to these cysts. Referral to a neurosurgeon is very slow and unproductive. Can anyone please help point me in the right direction wrt to research or information. Thanks...

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Choroid Plexus Cysts in Adults FranLee Brain & Nervous System Disorders 0 01-14-2009 10:46 PM
Need some help understanding what a choroid plexus cyst is. Kristeen Brain & Nervous System Disorders 9 07-30-2008 10:33 AM
Choroid Plexus Cysts? yellowbird14 Pregnancy 14 06-21-2007 06:51 AM
Choroid plexus cyst Sweet73 Pregnancy 10 01-31-2007 10:23 AM
Choroid Plexus Cyst victoria48 Pregnancy 11 10-24-2006 03:18 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Ativan
Dilantin
Lexapro Neurontin
Paxil
  Topamax
Tylenol
Valium
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



cin66 (14), Kasey443 (8), Hamilton92 (4), NerveEnding (3), feelbad (3), scout316 (3), TopGeek (2), kelsifyer (2), ladybud (2), cindys601 (2)

Site Wide Totals

teteri66 (1139), MSJayhawk (943), Apollo123 (860), janewhite1 (823), Titchou (774), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 01:07 PM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!