"Crazy" MRI image

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"Crazy" MRI image

Postby RodeoRose » Wed Oct 12, 2011 11:05 am

I still haven't figured out how to post and actual MRI image on the message boards yet, so I'd like to try and describe the image and how it is baffling EVERY doctor/medical professional that has seen it.

Let me say first, though, that ever since I developed SM my pain from it has always been absolutely worst in my T-spine right in between my shoulders. Nothing helps the pain, not even surgeries, and of course it worsens with each passing day. The pain radiates in every direction, but especially to the right near my shoulder blad. Please let me also say, just like many of you all, I've had enough MRI's with and w/o contrast that not only can I fall asleep through any banging and knocking sounds around me, but I also never need to use a flashlight when walking in the dark because of how much I'm glowing with all residual contrast!!!...Lol! With the many MRI and other image studies the dr's have always seen the CM, SM, scoliosis, facial deformities, etc. However they've never seen a "weird" marking on my vertebra until my most recent MRI and the best they can say is that they've ruled out anything wrong with the scanner itself...

So, on one of the MRI images looking at my right side, a "white blotch" covering nearly 1/4 of my vertebrae is seen on my T-4. It is on the "top right" of that vertebrae and it has NEVER been seen on any images before. It had been nearly 20 months since I had a scan, so we did it in April/May of this year. It is by far one of the weirdest things I've ever seen. Like I said, my doctors have NO CLUE what it is and all the can say is, "now we understand why your pain is worse in your T-spine and how it radiates between your shoulders..." Really? That's all they can say????

Has anywone else had or have a "blotch" like this? Does anyone know what it could be? What it's called??? Any input, thoughts, or opinions would be really, really appreciated....please.!.

God Speed,
Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: "Crazy" MRI image

Postby razzle » Wed Oct 12, 2011 11:48 am

here are some rules I found

Can I post images?
Yes, images can be shown in your posts. If the administrator has allowed attachments, you may be able to upload the image to the board. Otherwise, you must link to an image stored on a publicly accessible web server, e.g. http://www.example.com/my-picture.gif. You cannot link to pictures stored on your own PC (unless it is a publicly accessible server) nor images stored behind authentication mechanisms, e.g. hotmail or yahoo mailboxes, password protected sites, etc. To display the image use the BBCode [img] tag.
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Re: "Crazy" MRI image

Postby razzle » Wed Oct 12, 2011 12:07 pm

I found out yipeeeeeeeeeee , you have to go to photobucket to download your photos , then copy the image link and then come back here click in to img and put the link inbetween and submit . I did it on another post
Once you choose hope, anything's possible.

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Re: "Crazy" MRI image

Postby RodeoRose » Thu Oct 13, 2011 10:39 am

Thank you so much for going to the trouble of learning how to post images here, I really appreciate it. With any luck I'll be able to go to photobucket today or tomorrow so that I can get my images posted. I cannot get pain care in the town I live in, so I have to go out of town this afternoon to see my pain care dr....I hate car rides, lol.

Thank you again, "Razzle!"
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: "Crazy" MRI image

Postby razzle » Thu Oct 13, 2011 11:43 am

if you look n other post I Posted a photo
Once you choose hope, anything's possible.

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Re: "Crazy" MRI image

Postby razzle » Thu Oct 13, 2011 11:46 am

[imgImage][IMG]
Once you choose hope, anything's possible.

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Re: "Crazy" MRI image

Postby Beverley » Fri Oct 14, 2011 2:16 pm

Well that explains it... LOL Just Kidding...lol
Cute Puppy!! lol
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
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Re: "Crazy" MRI image

Postby RodeoRose » Sat Oct 15, 2011 10:33 am

I love it!! A cute puppy can cure anything!!
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: "Crazy" MRI image

Postby Cyborg Ninja » Sun Oct 23, 2011 11:01 pm

What we need to know is what weight was the MRI. Was it T1 or T2 when the blotch is white? Is it the same color as your syrinx on MRI?
DX: SM (idiopathic), Crohn's disease, Graves' disease, gallstones, scoliosis, anemia
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Re: "Crazy" MRI image

Postby Debbieducati » Sun Nov 06, 2011 12:47 am

That's a good question, is it the same color as the syrinx when it showed up. Do the doctors think you have a spinal leak in that area, so if it's not contrast material that is showing up white, then you should have a simple x-ray done to see if there are any boney changes in you T-spine, that is very important. Have you tried to copy the disc and send it to the Chari center in L.A. California. They may be very interested in you case.

good luck to you
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Re: "Crazy" MRI image

Postby RodeoRose » Sun Nov 06, 2011 11:58 am

I hadn't heard about the Chiari Center in LA, but am very interested in learning more. About 2 weeks ago I underwent another MRI, a complete spinal series of X-rays, and even a CT scan. The "blotch" is not the same color as my syrinx, the blotch is white, the syrinx is dark gray/black.

According to my radiologist and my neurologist the blotch is, in fact, in the bone itself. The radiologist said that he's gone clear back to MRI's from 2000 to present to compare all my studies. As he sees it, this "thing" has actually been growing since at least Nov. 2009 and he sees several more "developing" throughout my t-spine and lumbar. And that even the various times of x-rays show it too. In fact, in Oct. 2009 I fell off a fence that I was proped up on landing directly on the back of my neck and my t-spine. I was transported to ER and underwent a thorough x-ray work up in ER. The "blotch" was actually present on those films, however the doctors were more attentive to the crushing injuries I had sustained.

We are trying to decide which route to go next to further diagnose this. If we could figure it out, it could drastically help us to understand more of the horrible and constant pain between my shoulders. We could also learn how much this could affect the severe spinal atrophy in my t-spine. It sounds, though, like the next options for testing could be very difficult on me in regards to pain and energy levels. I live in a town that doesn't have very much medical technology and we've "used up" all of the imaging equipment we have here. I guess there is another scan that includes more contrast that gets a better picture of bones, however the closest machine is 300+ miles away and riding in a car is one of the most brutal things I go through. All other testings would be more invasive.

I'm terrified, worried, and overwhelmed...and like always, the scans showed other problems beyond what we were looking for...The site of my CM decompression is now completely "plugged" with scar tissue and is causing severe CSF issues. I already learned the hard way that if my head got tipped too far backwards that I blacked out...now explained by scar tissue... and that I have the most intense and annoying pressure in my left ear that is only controlled by putting pressure on the artery in my neck either with my hand or by repositioning my head, apparently caused by "kinking"...not to mention scarring where my C1 lamenectomy was done...

For years my doctors have been concerned that my body always creates too much scar tissue no matter where in the body that is, including an abdomen filled with scarring following 10 surgeries that is adversely affecting my liver, intestines, etc....and we've now learned through the rigorous recent testing that my brain and neck are no different in over-creating scar tissue.... in fact when my CM decompression took place, the neuro-surgeon had to remove arachnid scar tissue first just to get to the tonsils. He approached me afterwards upset with me because he thought I had had brain surgery before and lied to him about it...needless to say, I hadn't ever had surgery...he's still confused as to why my body created that tissue...

I honestly don't know how much more I can handle. I am physically, emotionally, mentally, and spiritually exhausted and am completely frustrated with my body...I can't figure out why it is letting me down and am dealing, for the hundreth time, with trying to find a reason behind this all and asking "what have I done that was so terrible that I deserve this?...." I just turned 30 last month and have spent the last 12 years in pain, struggling, and sufferring...and for what? I pray to God that He shares the answer to that question with me...soon, I hope.

God Bless you all for reading this...I hope that I didn't ramble or unload too much. I know that you all are struggling and suffering too. I pray, though, that you all have a blessed and good Sunday, and I pray for everyone with CM, SM, and more each and every day...

~Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: "Crazy" MRI image

Postby Debbieducati » Sun Nov 06, 2011 3:25 pm

Maggie I feel your frustration and pain, some of us have been there and back. Remember we are all here to help. It sound like the doctor is really trying to figure out why you are developing extra boney material on you spine. I have seen this in animals, I have worked as a Veterinary Tech, for 25 years and I have seen many MRI/Ct's/and x-rays of patients that all of a sudden have neuropathy. One of the medical terms for extra boney growth is (spondilosis). People and animals with spine degration can develop this because the body is reacting to the degeration and trying to rebuild bone. But when you develop the spondilosis it is around the facets and effects the nerves in that area. I'm no expert my all means, and I'm just quessing from what you said.

I would ask you doctor if he or she is unsure why? to referr the films and MRI to a specialist who may know more about what they see. Have them keep looking there is allways someone out they who has seen this. Never give up you will get the answer you are looking for.

I know the pain and frustration can run your life, but try to think (It could be worse) beleive me it could be worse. Remember to stop and smell the roses from time to time when you are feeling bad. I do this every day. I say well I could be in a wheelchair again. It took me over 15 years to find the answers and help I needed, and I still strugle everry day but with all I have to offer this world I'm not ever going to give up, I love life too much no matter what.
Remember FUN is not over rated!!!!!!!!
Do something for yourself.
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Re: "Crazy" MRI image

Postby Cyborg Ninja » Sun Nov 06, 2011 9:04 pm

We've determined now that the blotch is not made of CSF at least, and that it is dense. Does it have clearly defined borders, and does it extend past the vertebra?
DX: SM (idiopathic), Crohn's disease, Graves' disease, gallstones, scoliosis, anemia
Meds: tramadol, Asacol, Cymbalta, Synthroid, fish oil supplement, multivitamin
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