Chiari Malformation Community
Anyone?????
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Anyone?????

Woke up this morning with a "hot back", and was irritated. Hot back is the name I made up for when my back hurts and the muscles get hot and make me sweat. Irritation comes from the lat NS telling me by back pain was not from my CM or SM and there is nothing they can do to help me, even though I'm in pain all day everyday. But went on a info quest this morning looking up SM symptoms again........every last one says chronic back pain!!!!! I just don't have a clue how a doctor can tell you no, when everything else says yes! But I did have a 2nd NS suggest TPI, I have been waiting almost a month for this app. Has anyone else tried TPI and how was your outcome?
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620923_tn?1413427272

  Here is a list of all related conditions/issues

Syringomyelia can occur in cervical , thoracic or lumbar spine,
disk issues*
ICP POTS, Ehlers-Danlos*, sleep apnea, tethered cord, scoliosis, spinal stinosis, DDD* ,retroflexed odontoid *, cerviocranial instability*, ....also look to ur vitamin and mineral levels,...they r important too.Vit D, B12, magnesium, potassium...

The * indicated those that if u have EDS are more likely to affect u as well..
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620923_tn?1413427272

  The problem is with the Dr, not u and ur symptoms...u need a Dr that specializes in Chiari and syringomyelia...otherwise u will get these replies and  comments from the drs and then they send u to other Drs to find out what it could be all while they ignore the dx u already have...we have dubbed this the royal Chiari runaround.....the only way out of it is, find a true specialist.


AS far as TPI....not sure how that can help if that is not the real root issue....do they feel u have fibro?  Where or which TP do they plan to inject?

Have u had a CINE MRI yet? A MRI of the thoracic and lumbar spine? Tested for Ehlers-Danlos?
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CINE MRI shows minimal CFS in the back of my head, lumbar was pretty clean (1 herniated disc), thoracic shows a DD and my syrinx. I wont be able to ask about EDS untill Dec 4th. TPI was suggested as relief for the muscular back pain, like a right here, right now approach. As for the TP's I not sure of my "spots" I have my app today for that doctor.
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620923_tn?1413427272

  Is that Dr u see today a Rheumatoid Dr? if so, they may be able to help u with EDS and testing for it....not all are familiar, but it is worth a try.

Just make sure no injections r done in ur spine or neck area as they may hit a syrinx or ur cerebral tonsils....
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Thanks Selma, I am taking my mri's for her, and the doc is a pain management specialist. As for the RA I have an app for an orthopedic tomorrow.
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620923_tn?1413427272

  Good Luck tomorrow...keep us posted : )
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So on the 4th I had a back to back app with the NS and pain management specialist.

The NS believes i need a decompression and a shunt for my syrinx. He thinks this because there in no total blockage anywhere, but it's still causing a syrinx. So he'd want to start with the decompression and go from there.

Now here the stupid part...I had all my imaging done at a different hospital, so he didn't get to read my brain and CINE. Not remembering this I didn't take the discs. But he said in the time between our last visit he was talking with his mentor (don't know if this is good or bad) and they both came up with this treatment. The NS wants me to transfer to his mentor because he can only do a decompression but not a shunt, and if I end up needing both it would be better to have the same surgeon.

So this coming week, I will be meeting with another NS(3). Found out TCI wont take me with out of state insurance. And there might be a specialist 4 hours away

The orthopedic I went to was a sports doctor,(they should have let me know this when i went to schedule) so it was a waste of time...was told to soak my hands in warm water....awesome. Try again....

And my pain management specialist gave a tens unit with some pain patches (non narcotic). But is still waiting for my insurance to approve therapy. She want to pair the therapy with the TPI. The tens unit does keep my mind off of the minor right here right now pain, and the pharmacy just got my patches and will be picking those up later.
****************************a journeying I go***************
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620923_tn?1413427272

  Sorry.,...I had a few appointments like that....and I hope u find a Dr that u can not only use ur ins with, but feel comfortable with their treatment options for u....

I am not sure how a treatment plan could be decided upon without them seeing ur MRI....and I really do not understand the reasons ....???

Make sure All related issues r ruled out b4 u go forward with a dr and surgery.....

Did u look to see if the Dr near u might be on the list we have?
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Sorry i forgot to mention, NS2 had the very first cervical and thoracic MRI, they were done at his hospital, the repeat cervical, brain, and CINE flow, he did not have. He also told me when i consult with NS3 to tkae all my discs, so they can be fully read. Also NS2 told me if I stopped back in he would look. I really like NS2, but he is not a specialist, but I admire the fact he willing to admit, I'm out of his talent, and wants me to see someone he trust!

And for other doctors, their a few at the Cleveland clinic, their getting all my images together to look and see if anyone is qualified to take me on. Now I know their is a Dr.Recinos, I really like her seminars, and it seems like she has great statics..... Now if I can only see her....

As for other conditions, we have ruled out hydrocephalus, and TC. I still need to rule out or dx RA. My hands and Joints are like bubble wrap. Im not sure of my ICP, NS2 said he needed the CINE for that.

But what are some other conditions I should asked about, I don't meet NS3 till Dec.31, so I have some time.
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620923_tn?1413427272

  Well he may be nice and admitted he can not really help....so, regardless if u like Dr #2 he is of no help...

In ur list of things to rule out do not forget Ehlers-Danlos as that could be what is affecting ur joints.....

How did they rule out hydro if they do not know about ICP, they r pretty much the same testing to dx and same condition in different stages......I am confused..

The CINE is done to see if u have an obstruction such as the cerebral tonsils.....it is not used to determined ICP...many do a LP which is not always accurate for this, so ICP bolt monitoring is done, or nurse monitoring, basically u r in the hospital a few days and they record all vitals that pertain to ICP....and they also do the ICP bolt monitoring.,....

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The MRI reports, read no hydrocephalus. But thank you sooooooo much, if not for you and this forum, I'd be even more lost. I am going to ask NS2, about "how do you read pressure on a CINE" and see if he was b/s me.

So it seems I still need to ask about EDS, and ICP, any other you can think of?

Again thank you soooooooooooooooooooooooooooooooo much :)
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620923_tn?1413427272

  Here is a list of all related conditions/issues

Syringomyelia can occur in cervical , thoracic or lumbar spine,
disk issues*
ICP POTS, Ehlers-Danlos*, sleep apnea, tethered cord, scoliosis, spinal stinosis, DDD* ,retroflexed odontoid *, cerviocranial instability*, ....also look to ur vitamin and mineral levels,...they r important too.Vit D, B12, magnesium, potassium...

The * indicated those that if u have EDS are more likely to affect u as well..
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