Thoracic disc herniation and syringomyelia

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Thoracic disc herniation and syringomyelia

Postby sarahb » Sat Mar 01, 2008 5:15 pm

Just wondering if anyone else has experience in this. I have been diagnosed with TDH of T6/7 with cord indentation and again at T8/9 where there is only minor cord deformity. There is also an old longstanding compression fracture of T4!

I also have a syrinx which goes from T2 to T12, only thin between T2 and T6 but widens to 3.5mm from T6 down.

My NL said that both conditions are rare, especially the herniations in the thoracic area, and even worse, specifically where mine are (the critical zone). All of this was only discovered due to neurological symptoms, bowel and bladder problems and weakening of the legs.

NL has also stated that surgery to repair the TDH is extremely major (his words) and as far as I am aware, there is only one surgeon here in Auckland, New Zealand that could even begin looking at it.

Does anyone have experience in either surgerys? I am not sure which condition is causing my symptoms as they both can present the same.

Any advice, or experiences would be appreciated.

Cheers
Sarah
New Zealand
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Postby rainbowz » Sat Mar 01, 2008 5:44 pm

Hi Sarah,

I have 2 protruding discs at T1-2 and T9-10 and also a thoracic syrinx at T3-T8. Although no cord compression at any level. My syrinx is just under 2 mm in width.

I also have leg weakness and bowel/bladder problems among many other symptoms. I can't help you with the surgery part as I have not had surgery as of yet. I am still looking for a qualified Dr. to give me more answers.

Does your Dr. think the discs are the cause of the syrinx? The most important thing regarding the syrinx is to find the cause, whether it be Chiari, TCS, tumour etc etc. Since you have cord compression it is possible that the discs are extensive enough to cause a blockage in CSF thus causing a syrinx. BUT there can also be other complicating factors.

If you haven't had one already, you should request a head and cervical MRI to rule out Chiari or other problems and a lumbar MRI to rule out tethered cord syndrome.

You may have to travel to find a good specialist in order to have these things ruled out. Most NL/NS are not familiar with these conditions.

I hope this helps some.

Lacey
Thoracic SM T3-T8
Herniated discs T1-T2 and T9-T10
10 degree Scoliosis T4-T9
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Postby sarahb » Sat Mar 01, 2008 5:52 pm

Thanks for answering me Lacey

I have had the full MRI, no Chiari or tethered cord. The NL thinks that the syrinx could of been caused by the herniations but no one can be sure. I don't have any pain whatsoever in the thoracic region, in fact, I don't have much pain at all from the chest down!

I used to experience dreadful "monthly" pains, and they have gone as well. My NL is concerned because of the herniation compressing on the spinal cord, but couldn't tell me what could be done, as he isn't a surgeon. He did say if the herniations were in another area (either cervical or lumbar), that it wouldn't of been so serious, its just that they are in the thoracic.

I think he felt a bit guilty as he truly didn't think there was anything wrong with me, even though I warned him that all of my life I have had "odd" symptoms.

I should hopefully find out this week when my NS appointment is, he wil decide depending on how serious he thinks this is.

I have noticed that my legs are sort of cramped in the morning, or if I sit still for too long. I haven't told anyone about that so guess I had better tell the doc's that tomorrow.

Cheers
Sarah
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Postby sarahb » Thu Mar 06, 2008 7:41 pm

Okay - have my appointment to see the NS in six days (bumped to the top of the line :D )

Absolutely terrified but it is time to confront these two conditions head on and pull my head out of the sand!

fingers crossed
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Postby streetsense » Fri Mar 07, 2008 1:00 am

I've got a bad disc at T7-8. It certainly contributed to my syrinx, but may not be the only issue. I have a lot of symptom that seem to occur from problems higher up. I do have some issues around C5 and C6, but no syrinx, according to a recent MRI.

I'll be going back to the pain clinic to consider a referral to a NS for further evaluation. The pain clinic has a little experience with SM, but really isn't qualified to do more than deal with the pain issues.

The problem is that the local NS are mostly affiliated with folks that papered over these issues years ago when this all started as an on-the-job injury. I'll probably try to go out of town, if I can find someone with a good rep and background in SM reasonably close.

I've also heard that thoracic surgery is a tough road to follow. I'm not sure that surgery is the right thing for me, but I'm willing to consider it. If they could get my meds right, that would go a long way toward helping me deal with things. That used to be the case, but that's a story for another day.
streetsense
SM 7mm T-5 to T-10 with less clearly defined extension down through the lumbar vertebrae
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Postby SMLady » Fri Mar 07, 2008 12:07 pm

Sarah, I haven't had any surgeries, but I also have thoracic syrinx(s) - 3 of them - that go from T1 to T9. I have idiopathic SM, which means they can't find a cause. I've been tested for everything and have had MRI's of my entire body, brain scans, bone scans, you name it.

I have bulging discs basically all the way down, with those at T5, 6, & 7 giving me problems, but my doctor told me that these might be because of the SM instead of the other way around. Don't quote me, but it was something about how when the syrinx fills with fluid and presses out against my discs and causes them to bulge, blah, blah, blah.

I hope you can find answers. If you do, please share!

Take care and have a nice weekend.
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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The Man who walks with God always gets to his destination.
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Postby rainbowz » Fri Mar 07, 2008 1:34 pm

Hi Sarah,

Don't worry. Go in there confident and most importantly well informed and you will be fine. Maybe even bring some literature with you. If the Dr. doesn't know what he/she is talking about nothing you say will change that so don't waste your time and energy getting upset. Leave and find another.

I take it this is not a CM/SM specialist?

Let us know how it goes!

Lacey
Thoracic SM T3-T8
Herniated discs T1-T2 and T9-T10
10 degree Scoliosis T4-T9
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Postby Janice » Fri Mar 07, 2008 1:55 pm

SM Lady,

It is possible for the syrinx to cause disc buldging. In Aug. '07 I had no thoracic disc bulging but as of my latest MRI on Wednesday, I now have disc buldging.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby SMLady » Fri Mar 07, 2008 2:56 pm

That's what I thought. I wish I could remember exactly what my doctor told me, but I can't even remember what I ate for lunch!

But it makes sense if you think about it. Cavity fills with fluid which causes cord to expand and press against discs and causes them to bulge.

The only thing I know for sure is OUCH! Bulging discs can be so very painful.
Proud Mom of One Son
Idiopathic SM T1 - T9, DDD, Scoliosis, Pinched Nerves, Bulging Discs, Spondylosis, Stenosis
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The Man who walks with God always gets to his destination.
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Postby Janice » Fri Mar 07, 2008 3:09 pm

Ok, I had been suffering from more days of level 10 pain in the last few months. OUCH, is right!!!

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby florabug » Sat Mar 08, 2008 11:40 am

Okay, I am confused.. Some of you say that your NS said that the syrinx can be related to a bulging disk or vice versa? I have a bulging disk at C6-C7 with a cervical syrinx and my NS told me that they are unrelated. Is he giving me some misinformation??... I have contributed my bulging disk to my job, as it is physically demanding.

Thanks,
DE
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Postby sarahb » Sat Mar 08, 2008 7:22 pm

Hi everyone, and thankyou for responding. The NS I am seeing is apparently knowledgeable about my conditions, I am just not sure if he has seen both conditions on the one person. I have been told he is the top NS in New Zealand, and if there is anyone here that can help, he will be the one.

I spent last night writing down some questions, and my husband is coming with me to the appointment (he would of just finished a night shift so I may have to give him a poke in the ribs to wake him up!).

Anyway - I am trying to remain confident - had one of those bleak moments filled with terror last night but quickly changed my thought process and I am lucky I have so many wonderful friends and family supporting me through this (and of course all of you here).

I am off to a lovely spot called Gisbourne for a long weekend, some romantic time with just me and the hubby so really looking forward to it. I had a laugh at the irony of all of this, my MRI was on the 13th Feb, and it wasn't good news, my NS appt is on 13th March - so here's hoping for the opposite outcome.

I will let you all know how I get on and once again, thankyou for your kind words and wisdom.

Kia kaha
(means "be strong / stand strong" in Maori - this is my new motto)

Florabug - my NL said that my herniations and syrinx could be related, but weren't necessarily so. Because I don't have Chiari or tethered cord, and the fact that all my problems seem to be in the same area, the chances were that it was likely!
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Postby sarahb » Wed Mar 12, 2008 9:23 pm

I love my NS ;-) Had my appointment today, herniated discs probably happened about 12 years ago so the spinal cord damage is permanent and I would gain absolutely nothing by operating. I have to have another MRI in 6 months to see what the syrinx is doing, and am now under my NS care for all things syringomyelia. He didn't discount my symptoms, told me I knew my body better than anyone and if I thought that there were changes to phone him immediately.

He has given me permission to start exercise to strengthen core area and legs, and told me what I can and can't do plus given me some great advice on how to deal with bowel and bladder issues. I came out of the appointment with a huge smile on my face - the man seemed to actually care!!! And he is the top guy in my little country, has patients with syringomyelia and didn't try to tell me it was all in my mind.

So fingers crossed that nothing new happens in the next few months! I am so happy I feel like skipping in the park :-)
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Postby streetsense » Wed Mar 12, 2008 9:46 pm

It's always good to hear the results of a positive office visit when SM is involved. Far too often, the opposite is the case.

I'm inclined to think that most New Zealander's are kind-hearted and encouraging people, given my personal experience with knowing a couple of those from your fair islands.
streetsense
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sleep apnea
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Thoracic Syringomyelia

Postby 1proudmom » Tue Mar 25, 2008 6:48 pm

I have read everyones response concerning syringomyelia. I'v been fighting this for about 2 years. I had symptons from headaches, pain in my arms and legs mostly on my left side. I have pain that may begin dull or achy and slowly increases or some time come on suddenly. I also have numbness and tingleing in my arms. Some of the doctors that i see seem to think i've been making this up, but the one NS i've seen has been backing me ever since. I have a disc protrusion at C6-C7,is a minimal left paracentral protrusion and/or posterior osteophytes which contact the thoracic sac but not the spinal cord. My syrinx involving the thoracic spine is 2MM at the T6 level. The syrinx is at T6 and continuation to the level of T12/L1 with no evidence of the cord tethering. I also have mild degenerative disc disease of L4-5 and L5-S1 developing without canal stenosis. At L3-4 and L4-5 this is mild facet joint arthropathy developing with ostephytes that appear to contact the exiting L3 and L4 nerve roots bilaterally. I need to know is it common for these symptons to not be as noticeable all the time? At moments i am in so much pain that i fell that i want to just cut off an arm or do something to make the pain go away. I'm in the military and this is causing me a problem. They are wanting to discharge me with saying that i have low back pain and that is it. I need help in telling them that this is more than low back pain. If anyone has any advice please let me know.
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