Aa
Lipomas?
How many people on here have a lipoma?
I was looking at my MRI's and there is something showing up on my STIR images but barely showing up on T1 or T2 weighted images which indicated the presence of fat. It is located at T-2 spinal canal on my MRI which I didnt pay for a thoracic MRI so they didnt note anything, but it is very noticeable. You can see it on the neck MRI on my profile at the very bottom of the image. I know I must sound crazy, but this has been driving me crazy not knowing what is going. I just know that there is something there because I am always having pain in that exact area and radiating into and down my right arm, also during my MRI. I thought to myself during the MRI, they better see what is there causing this pain, I was very mad that my doctor didnt order the thoracic images. Thanks for reading! : ) Stacey
I was looking at my MRI's and there is something showing up on my STIR images but barely showing up on T1 or T2 weighted images which indicated the presence of fat. It is located at T-2 spinal canal on my MRI which I didnt pay for a thoracic MRI so they didnt note anything, but it is very noticeable. You can see it on the neck MRI on my profile at the very bottom of the image. I know I must sound crazy, but this has been driving me crazy not knowing what is going. I just know that there is something there because I am always having pain in that exact area and radiating into and down my right arm, also during my MRI. I thought to myself during the MRI, they better see what is there causing this pain, I was very mad that my doctor didnt order the thoracic images. Thanks for reading! : ) Stacey
If it wasn't for you, I feel I would have no direction. I dont know where I would be with out your help. What does PM stand for?
COMMUNITY LEADER
Stacey,
Well Dr Ellenbogen is a well know chiari dr so u have ur file in good hands....u will have to wait and go by what that dr advises......
Make sure if u r told at this time u r not a candidate for surgery ask for a NL or PM referral.
Just in case, not saying u will get the same from this dr as the last...but do be prepared with questions as to what u can do if u r not a candidate for surgery.
I pray u get some direction
"selma"
Well Dr Ellenbogen is a well know chiari dr so u have ur file in good hands....u will have to wait and go by what that dr advises......
Make sure if u r told at this time u r not a candidate for surgery ask for a NL or PM referral.
Just in case, not saying u will get the same from this dr as the last...but do be prepared with questions as to what u can do if u r not a candidate for surgery.
I pray u get some direction
"selma"
Thank you Carolyn, and Selma. Thank you both for listening. I wouldn't have a clue what to next if it wasn't for the support. And I am sorry Selma, it must get hard to remember everybody's conditions.
there was no contrast for my images.
I did send my MRI's to a specialist in Seattle and I am waiting to hear back from them. It is Dr. Ellenbogen at the Chairi clinic at Harborview med center.
I can tell that there is no csf behind my cerebellum, but it is a mri of my neck so it just shows the bottom of my brain. My tonsils look fine, but they are at the formen magnum. My cerebellum looks squished. I agree I need a cine mri to see the csf block properly, as I was laying down so it is hard to tell really what is going on.
And its not like I want surgery, I just want to know what is going on.
I did send my MRI's to a specialist in Seattle and I am waiting to hear back from them. It is Dr. Ellenbogen at the Chairi clinic at Harborview med center.
I can tell that there is no csf behind my cerebellum, but it is a mri of my neck so it just shows the bottom of my brain. My tonsils look fine, but they are at the formen magnum. My cerebellum looks squished. I agree I need a cine mri to see the csf block properly, as I was laying down so it is hard to tell really what is going on.
And its not like I want surgery, I just want to know what is going on.
arg... so frustrating... even if you can't find a Chiari specialist there are some NS that are so much more open minded than others.
I know it's really hard but keep pushing...there is someone out there that will help you!
Carolyn
I know it's really hard but keep pushing...there is someone out there that will help you!
Carolyn
See this is my problem. I only have MRI's of my neck and lumbar. I didnt know my doc didnt order the thoracic and I didnt find out until I got a referral in the mail just before the scan. So they cant even see the whole picture. Im fighting to get more MRI's, more testing to find out why I have a syrinx.
COMMUNITY LEADER
Hi....not all of us will be a surgical candidate......may I ask what MRI's u had done and were sent?
Did u have MRI's of the brain w/wo contrast...cervical spine, thoracic, and lumbar...u need to rule out tethered cord, syringomyelia...CSF blockage, so u need a CINE MRI.....
Then the NS looks at do u have a CSF blockage, overcrowding and what symptoms do u have?.....This does not mean u suffer ne less....it just means at this time the benefits do not out weight the risk....the risks of this surgery r great.....it is not a cure and u can end up with more issues than b4.....
I know u have an insurance issue, but pain management with the guidance of a NL or a very interested in learning PCP u will need to monitor the chiari and symptoms.If u have ne changes u see a NS....but, they will only see u if u r a candidate for surgery.
NOW u said u sent the records to the WRONG dr...that is a possibility that u do not have a chiari specialist in ur area....just a NS does not mean u have a dr that understands what chiari is and can do to the patient.
Please try to send ur records to a dr that is a true chiari specialist and not one that is close...most of us do need to travel to get to the right dr.
I went to several NS in my state and was told by one u don't have chiari and the 2nd said u have it, but it is beyond me....?? I went to NY to The Chiari Institute and was treated there.
Many of us have this set back....and may be told the same thing by the true specialists...TCI has told members here they were not candidates for surgery....that is y I said all I did at the beginning of this reply.
Hang on and keep pushing until u know the right drs feel u do not need surgery at this time : )
"selma"
Did u have MRI's of the brain w/wo contrast...cervical spine, thoracic, and lumbar...u need to rule out tethered cord, syringomyelia...CSF blockage, so u need a CINE MRI.....
Then the NS looks at do u have a CSF blockage, overcrowding and what symptoms do u have?.....This does not mean u suffer ne less....it just means at this time the benefits do not out weight the risk....the risks of this surgery r great.....it is not a cure and u can end up with more issues than b4.....
I know u have an insurance issue, but pain management with the guidance of a NL or a very interested in learning PCP u will need to monitor the chiari and symptoms.If u have ne changes u see a NS....but, they will only see u if u r a candidate for surgery.
NOW u said u sent the records to the WRONG dr...that is a possibility that u do not have a chiari specialist in ur area....just a NS does not mean u have a dr that understands what chiari is and can do to the patient.
Please try to send ur records to a dr that is a true chiari specialist and not one that is close...most of us do need to travel to get to the right dr.
I went to several NS in my state and was told by one u don't have chiari and the 2nd said u have it, but it is beyond me....?? I went to NY to The Chiari Institute and was treated there.
Many of us have this set back....and may be told the same thing by the true specialists...TCI has told members here they were not candidates for surgery....that is y I said all I did at the beginning of this reply.
Hang on and keep pushing until u know the right drs feel u do not need surgery at this time : )
"selma"
I gave my records to the wrong doctor, They just called me to say " you are not a surgical candidate " I was like. so I need a doctor that I can even talk to about this condition, she said the doctor wont see you unless you need surgery. So she said I should see a physicist or whatever. Waste of time!!!!!! Im soo mad
Woo HOO chocolate...that always helps...!!
Don't worry about the obession...I am there with you... and I seem to go back there every few days. That is just what happens when you are not getting the attention and answers that you should. It is hard to let go but I tell myself that too...I waste a lot of energy worrying and then it puts me in a bad mood for my family.
I am soooo glad you are getting 2nd opinion...sometimes it is just about finding the right doctor!!
Take care
Carolyn
Don't worry about the obession...I am there with you... and I seem to go back there every few days. That is just what happens when you are not getting the attention and answers that you should. It is hard to let go but I tell myself that too...I waste a lot of energy worrying and then it puts me in a bad mood for my family.
I am soooo glad you are getting 2nd opinion...sometimes it is just about finding the right doctor!!
Take care
Carolyn
COMMUNITY LEADER
Stacey...I am glad u had someone with u to get ur mind off ur medical issues for a while...and chocolates r always good...if it is dark...tell me u got dark chocolate : )
And I know we ned to educate ourselves, but we also have to release it too....if we say this is driving me nuts.,...we have to take a break......
That is one reason for FRIDAY'S FRIBBLE : D
I look forward to an update once u get one
"selma"
And I know we ned to educate ourselves, but we also have to release it too....if we say this is driving me nuts.,...we have to take a break......
That is one reason for FRIDAY'S FRIBBLE : D
I look forward to an update once u get one
"selma"
I took my Medical records to a NS here in town to see about a second opinion...even If I have to come up with cash to pay them up front. Hopefully I will get some help faster than waiting for state insurance and the NS in Seattle. Both of them told me 1 to 2 weeks before I hear anything.
Then I went to the mall with my god sister and it helped my get my mind off of everything for a few. Then we went to barnes and noble and I tried to go to the medical book section. My god sister said "no I am not letting you obsess over this" I realize she is right, selma is right, I just need to forget about it for a few and let go.
I did however get some Godiva chocolates half off from valentines!!! That helped : )
Then I went to the mall with my god sister and it helped my get my mind off of everything for a few. Then we went to barnes and noble and I tried to go to the medical book section. My god sister said "no I am not letting you obsess over this" I realize she is right, selma is right, I just need to forget about it for a few and let go.
I did however get some Godiva chocolates half off from valentines!!! That helped : )
I have MANY lipomas... all over. Mostly on my low back, butt, thighs and arms. I just recently (last week) literally STUMBLED on something that may hold some answers. It, too, is rare... It's called Dercum's Disease (also Adipose Dolorosa). I was floored when I read about it, as there are a lot of parallel symptoms.
In 2000 I had 29 of these tumors excised from my low back and butt. It was a very painful surgery and afterwards, I was told they would probably return... and they did. I can't even count how many I have!
Now, I haven't been told that I have any of these near my spine, but due to where they're located, they could be the cause of some of my lower body problems. (Although Dr. Di thinks some of those problems may be helped with the CM surgery too!! I'm very hopeful!)
The doctors have never been able to give any rhyme or reason for the tumors... so perhaps we have a new avenue where they are concerned! I have to tell you, I am about 30-40 lbs overweight, but not grossly obese or anything (and I had these when I was a Size 4 and now am a Size 12)... so you don't have to be obese to have fatty tumors!!!
Blessings to all of you!
In 2000 I had 29 of these tumors excised from my low back and butt. It was a very painful surgery and afterwards, I was told they would probably return... and they did. I can't even count how many I have!
Now, I haven't been told that I have any of these near my spine, but due to where they're located, they could be the cause of some of my lower body problems. (Although Dr. Di thinks some of those problems may be helped with the CM surgery too!! I'm very hopeful!)
The doctors have never been able to give any rhyme or reason for the tumors... so perhaps we have a new avenue where they are concerned! I have to tell you, I am about 30-40 lbs overweight, but not grossly obese or anything (and I had these when I was a Size 4 and now am a Size 12)... so you don't have to be obese to have fatty tumors!!!
Blessings to all of you!
Really?? That is too bad!! I had my images for 5 months and combed over them just like you did trying to figure it out (i didn't know I had Chiari then). No one would discuss them with me and it was just pure luck that I got the NS I did and I could get answers to my questions.
Did you get any copies of the radiologist report?
Otherwise, I'm with Ray, see if your GP will look at it....
I don't blame you for wondering about things you see..my NL didn't tell me about the Chiari on my MRI so I have trouble trusting what doctors say.
Did you get any copies of the radiologist report?
Otherwise, I'm with Ray, see if your GP will look at it....
I don't blame you for wondering about things you see..my NL didn't tell me about the Chiari on my MRI so I have trouble trusting what doctors say.
I wouldnt say I stressing over this Selma, I just dont know what else to do with myself but research and try to figure out what is going on. I understand that there is nothing I can do except what I have already done.... and wait. But I am just really bad with waiting. Unfortunately I am fascinated with my MR images so I have spent alot of time researching everything I can, so that I can try to understand what I see. I am most likely wrong about what it is I see, but I know that I see something, right next to my spinal cord at T2 and its not CSF.
Cmoeller, I dont have a NS or Insurance. I dont have the luxury of a doctor actually going over my images with me. I get a letter sent in the mail. Or a phone call if its urgent. It would be all the difference in the world for me if I had a doctor who would go over my images with me. Heck I wouldnt be typing this right now.
Cmoeller, I dont have a NS or Insurance. I dont have the luxury of a doctor actually going over my images with me. I get a letter sent in the mail. Or a phone call if its urgent. It would be all the difference in the world for me if I had a doctor who would go over my images with me. Heck I wouldnt be typing this right now.
If there was anything sinister going on the doctors would be on your case so don't worry about it. If you can get your GP to look at the scan and see what they say about it :)
Ray
Ray
MRI's are really difficult to read if you don't have a trained eye..
There was a big lump on my neck at exactly the area that I was having pain (where my neck met my shoulders)and I was convinced after looking at the pics that it was something and all my family thought so too. Finally I got up the courage to ask my NS what it was and It turns out if was just the way my skin was folded when they took the picture.
Not saying that is what yours is but I would just ask your NS...and get the answers!
There was a big lump on my neck at exactly the area that I was having pain (where my neck met my shoulders)and I was convinced after looking at the pics that it was something and all my family thought so too. Finally I got up the courage to ask my NS what it was and It turns out if was just the way my skin was folded when they took the picture.
Not saying that is what yours is but I would just ask your NS...and get the answers!
COMMUNITY LEADER
HI Stacey,
I have not had the mention of a Lipoma on ne of my MRI's...the only thing is a cyst where my cord is tethered ......
Not being well versed in reading a MRI, I am not sure I can be of help here......only on the info the drs pointed out and shared with me.
And I have also learned from others here that many drs have a diff way of explaining as they also have varied opinions....so, please do not stress out over something until u have a dr u r comfortable with and u know what u r dealing with.
I understand u have pain....and u have meds for it...forget about the MRI for now as stress will fight the meds in helping u.
"selma"
I have not had the mention of a Lipoma on ne of my MRI's...the only thing is a cyst where my cord is tethered ......
Not being well versed in reading a MRI, I am not sure I can be of help here......only on the info the drs pointed out and shared with me.
And I have also learned from others here that many drs have a diff way of explaining as they also have varied opinions....so, please do not stress out over something until u have a dr u r comfortable with and u know what u r dealing with.
I understand u have pain....and u have meds for it...forget about the MRI for now as stress will fight the meds in helping u.
"selma"
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