Concerned about worsened sm 8 years since 1st diagnosis.

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Concerned about worsened sm 8 years since 1st diagnosis.

Postby Carole » Tue Jun 19, 2007 6:35 pm

Hello everyone,
I am Carole. I had mri around 8 years ago after an injury and had just a 2mm syrinx in T4-T5. Years ago I had pain but ignored it. Then I began to have pain in my chest (not heart related after tests). I went today and recieved reports from two new mri reports. I had to tell them I had a syrinx for the second report to say "Syringomyella from T6-T8..another T5 to T9". They say T4 and T5 have(complicated sentence of medical terms). If I could ask two questions. 1) Has anyone had chest pains from similar sm. 2) What concerns should I have about growth. and 3) Sorry one more....Next they want me to see a Nerologist at the "Buro Borro or Burrow" Clinic in Phoenix Arizona. (sorry I do not know the name of the clinic.) What questions do you ask a DR.

Postby precious » Tue Jun 19, 2007 7:37 pm

Hi Carole,
Welcome to the board I am was only diagnosed in Feb with SM and my syrinx runs from T6 - T12 8.2 mm. I have expercienced The chest pains also I was rushed to the Er on Mermorial day this year, for the pains and after running many tests and having the heart ruled out, along with heart burn, indegestion, panic attacks, blah, blah the only thing that they could come back to was my SM. They said they believe it to be the pain radiating around to my chest. Although my pain felt like it was coming from inside of my back and stabbing through my heart. I am in Utah so i am not familiar with any clinics in Az. But I am waiting to now be seen by a Nuerosurgeon, I have completed my run with the NL, just really cost me alot of money and Got me My referal to my NS. But he did pit me on medicine for my headaches wich have been helping a little. With your question on growth I am sure that the NL is going to suggest to have it monitored and get MRI's evry 6-12 months to watch the growth.

SM T-6/T-12 8.2 mm
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Postby razzle51 » Wed Jun 20, 2007 7:22 am

Carole I sent you a PM .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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me too

Postby sparks42 » Wed Jun 20, 2007 8:44 am

What exactly are your chest pains like? I get chest pains....also had tests on my chest and the docs found nothing.
My chest pains feel like a sudden stabbing in my heart area sometimes lasts for 2 seconds...sometimes 10.
It always catches me off guard and scares me.....making me just sit there absolutely still in fear that it will happen again.
It's so interesting what kind of strange pains SM can cause.
- Syringomyelia, Scoliosis, Spinal Fusion, no CM
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Postby petsmom » Thu Jun 21, 2007 6:44 pm

I have syrinx T5-T9 and yes, it causes chest pains and other "heart attack" type sensations!! Also caused upper GI sensations but test was negative and not GERD. Also causes tightening around ribs and breast area, similar to contractions. Feel like someone is "bear hugging" you and can't take a real breath. Mine feels like someone shoved a hot poker through my mid back clear through to the front. Sunburned sensation. Somedays my blouse will be scratchy feeling to skin.

You name it and it probably is the syrinx if involves the area syrinx is in.
Did the 911 call, thought I was a goner for sure. Body had turned to mush and couldn't form words right. Blood pressure ups and downs can be a issue!! Almost died taking BP meds I really didn;t need. Put me in cardiac care and heart checked out AOK. So good thing to know. Now I know to kinda ignore and not get excited and make it worse. That is KEY when going through a first time symptom. Anxiety can make it seem worse or actually worsen as our BP goes up.

I am not my disorder. It does not define me as a Person.
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chest pains

Postby jjames » Thu Jun 21, 2007 8:01 pm

There was a thread posted not that long ago regarding chest pain....might be worth the look back. Hang in there!
~Everything is always ok in the end. If it's not, then it isn't the end.~

1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
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