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09/23/2011 05:21 AM

Brain cysts

NavyDiver1
NavyDiver1  
Posts: 358
Member

All,

So I recently got an MRI of my brain. I was not surprised when they told me there were a couple cysts in my noggin. Have any of you had these same results? The one cyst is called a pineal cyst. The other is a lipoma on my corpus callosum. I spoke to Dr. Herbst about this and she said she does know of one other person with a pineal cyst but I maybe unique with the other. She also sends her love to you all.

-Damien-

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09/23/2011 05:17 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Thanks for sharing Damien...thanks for telling Dr Karen "Hi" for us. I know a woman who was living in Sweden....she was a patient of the famous doctor there who researched DD. He died a few months ago. She is now living in Poland. When they did brain scans on her..they saw lots of pinpoint lipomas all over her brain. I'll email her and ask for more information. Her English is quite good. She is the only person I know of that has it in her brain. She has a full fledged case of DD. I know how scary it must be for you to have these cysts in your brain. Try not to worry too much. I bet most of us with advanced DD have these in our brains. I have a large "cyst" in my ankle where the foot meets to ankle. We need to look more into the brain growths and I will try to find out all that I can about it. We care about you Damien..Stay strong. Hugs, Grandma Sylvia

09/23/2011 05:56 PM
Margie
Margie  
Posts: 739
Member

Yes, Damien, we do care about you and for all we know many of have cysts and growths throughout our bodies. I know it is not the same however I have also had tests that show innumerable cysts within my body - and suspect that some of my previous surgeries removing benign growths are all related to dercums. You have so much to offer this group, please do worry too much about something we know so little about. Will keep you in my thoughts and prayers along with the rest of the gang here. Keep well.

09/23/2011 09:11 PM
myladylumps
myladylumps  
Posts: 230
Member

Hi Damien...thanks for sharing and I cannot imagine how scary this must be for you. I have not had an MRI of my brain, but if and when I get that test done, I will update you. I am honestly not surprised either as the others, that this has happened to you, especially with Type III DD, which I believe you have and as well as I do and I wouldn't doubt the other two Type's might have them as well.

What prompt you to have the MRI done? What kind of symptoms were you having?

Just know you have a big following here and lots of encouragement and support.

Please keep us all posted.

My sincere heartfelt prayers to you.


09/23/2011 09:31 PM
ArtsyAnnie
 
Posts: 604
Member

HI Damien,

Thank you for sharing - I suspect that you are now in shock and trying to come back to earth.

Cysts can usually be removed without consequences. As to the other - I suspect I have them in my brain too but hav eno any testing.

I know you research a lot. If you are losing ANY briain power, my suggestion is to go on line to the brain research sites and see what part of the brain is associated with that ability (if you have lost any). Our knowledge of the brain has exploded in the past 20 years; there might be info there for insight. Maybe you could even get into a test group.

My other thought would be this: at the fibro clinic they told me that fibro (which they believed was a forerunner for DD in some people) is a physicial state where something interferes with oxygen getting to the mitrochondria of the cell (they believed that it was an unidentified infection). Since you are a diver, I am wondering if there is a change in the amount and/or type of oxygen that you are getting into your system when diving or coming up (your age is what triggered this thought in me). I suspect that you probably already know this information but it might be worth exploring and asking Dr. H if she sees any possibilites here (the last thing I would want to see is you having to give up diving - so please take this in the right light!!!)

For me, I have believed for a long time that part of obesity is that the burning of fat in our bodies takes place in an anerobic state rather than in an oxygen state - but I have never been able to prove it. The reason - the tissue outcome is different in thin people and fat people. I ko wyou are thin, but the fat in lipomas is differet than regular fat.

I hope you don't think I am totally whacked - I have not shared this with people because - well - - -. I am sharing it because somewhere, somehow, someone will say the thing that will trigger your thoughts and lead to an answer.

May God bless you and keep you through all of this Damien - and your beautiful family too. Keep searching, we are closer than ever to answers - I have worked on it by myself for over 50 years as I could. I can also say that when I prayed a lot and asked for specific things, I got leads and sometimes pretty direct answers - for whtever that is worth.

I believe there will be answers for you Damien.

ArtsyAnnie

One other thing - I have said this before. I had a growth removed from my leg a year ago and no lipomas have formed there - I had the tech cauterize all the blood vessels in order to keep inflammation to the minimum and I REALLY think this is why - but I can't prove it.

Post edited by: ArtsyAnnie, at: 09/23/2011 09:39 PM


09/24/2011 09:34 AM
wendyew
 
Posts: 623
Member

Hi Damien, Not sure if this will help. I had a brain scan last year and they found nothing except a 66 year old brain, however I do have lumps all over my head. Doc says it's nothing. Good luck and hope you don't get brain fogs like i do. Wendy

09/24/2011 10:20 AM
hopefullee
 
Posts: 122
Member

I Have had a MRI and YES it did show some very odd things... Dr K was sure that the test results were indicating a very serious issue with cyst/polyps/nodes after a quick International call but as we have no medical technicians here to read the MRI properly so it was cleared as OK in Australia.

I am still on the road with a screamingly loud squeaky wheel for Dercums ...

Take care everyone and stay calm and stress free...

Hopefullee


09/24/2011 08:20 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Annie..very thought provoking..So maybe Damien's DD was accelerated by how oxygen is used in diving? If this is a possibility...Damien could get service-related disability benefits. Our DD military guy..Jake..who was on Mystery Diagnosis..his started bothering him when he had his basic training...lots of oxygen demand during this! Maybe that is why exercise makes us worse? ..An increased oxygen demand. A lot of older people with DD need oxygen..including me. Keep up the good research. Hugs to all, Grandma Sylvia

09/26/2011 12:09 AM
ArtsyAnnie
 
Posts: 604
Member

HI

I was thinking out loud. But we all know that oxygen - or lack of - IS involved in some way. From what Damien has written, he loves diving - so that would be that last thing I would want involved for him.

Blessings to everyone - - - I wish I had a magic wand, especially for Damien - he is so young and healthy!

ArtsyAnnie


09/26/2011 04:37 AM
NavyDiver1
NavyDiver1  
Posts: 358
Member

Thank you all and I apologize for the delayed response. I only freaked out about the cysts for a little while. When the neurologist and Dr. K said that they were no big deal, I was reassured. They will monitor them for growth and hopefully nothing will need to be done in the future.

Like you guys have said, if all of us had an MRI on brain they would see some sort of lipoma. Sylvia that would be awesome if you could talk to your friend; I would like to know if they have encountered growth.

I had the MRI done because I am going through the medical retirement process. Also referred to as a PEB (Physical Evaluation Board) of course I am getting retired because of DD. The main reason is because I can no longer be a Navy Diver. The symptoms that DD brings are too closely related to diving related illnesses.

About the oxygen thing; very good thinking on your part. You were right as a Diver we do encounter different partial pressures of oxygen. They are always far greater than what we breathe on surface. High PP02 of oxygen helps with cutting down decompression time and also helps stricken divers who have to be treated in the recompression chamber.

We also use recompression chambers to help heal burn victims or individuals with really bad infections.

That being said I am currently in the works with my doctors to get HBO therapy. (Hyperbaric Oxygen Therapy). Like you have stated there is obviously something going on with 02 levels in individuals with DD. So one would think that by saturating your blood with 02 this could be beneficial. I have noticed a huge decrease in my run times for the past few years. As of now it is too painful to run. I spoke to Dr. K about this and she said that was because of DD.

Hope I didn't go too far into the weeds. I will gladly go into how recompression works and the benefits of it if need be. Again thank all of you for the support and I will keep you posted.

-Damien-

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