Syringomyelia

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Re: Syringomyelia

Postby Mama_Darwin » Thu Jan 19, 2012 4:33 pm

I just got an email this afternoon saying that I qualify for the NINDS study. I messaged back with this question, but I thought I'd ask here at the same time, and see what other people's experiences are.

I live in central Ohio - a goodly distance from NIH. What do they cover in terms of travel expenses? The only way I could afford to participate in the study is if they truly paid to get me there and back.
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Re: Syringomyelia

Postby karenb » Thu Jan 19, 2012 9:34 pm

Congratulations on your acceptance!

I really hope you can manage to participate in the study - first, because they provide excellent state-of-the-art treatment, and second, because you can be a voice for the rest of us.

Karen
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Re: Syringomyelia

Postby gunflint » Fri Jan 20, 2012 8:52 am

They cover travel expenses for any visits. They also give you a reimbursed food allowance and will reimburse up to $185 per night for lodging if your there as an out patient. If you are admitted for surgery they will cover travel for a caregiver or whatever they call them these days and put them up in the Saffra Lodge. Pm me before you go in for surgery if you do and I can give you a few tips on controlling a situation that quickly goes out of your control after surgery. It's not bad but I wish I would have known a few things beforehand.
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Re: Syringomyelia

Postby karenb » Mon Jan 23, 2012 10:38 pm

Gunflint,

Thank you so much for providing the needed information. When I applied, it wasn't clear at all what would or wouldn't be covered... but then I wasn't eligible in the final analysis anyway, so it didn't really matter.

Mama_Darwin,

I wish you all the best in your battle with this.

Karen
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Re: Syringomyelia

Postby Syrinx810 » Mon Feb 27, 2012 5:03 pm

Just curious I was denied for the study with a 4mmx25mm cervical syrinx c5 to c7. I tried to read the old posts, but couldn't find your syrinx location and size. Would you mind sharing?
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Re: Syringomyelia

Postby karenb » Mon Feb 27, 2012 11:15 pm

Not sure who this was directed to, so I'll take the first stab at it...

My syrinx is appx 3mm at its widest, from T6-T9 (they didn't translate that into mm for me).

One important reminder is that it's not just the placement, diameter, length, or degree of disability that matters. It's really whether the study (or studies) for which you are being evaluated considers you a good candidate for that particular study. In my case, they didn't care about what other Neuro-Surgeons had said (they didn't even ask for that info), and they evaluated my MRIs & medical history independent of all other info.

Don't know if this helps or not...

Karen

P.S. When I applied, I had been in a wheelchair for over 2 years and my bladder had already paralyzed from my SM. The team of neurosurgeons looked at everything with an objective view of "could this study help this patient". While the result was emotionally hard to take, I do believe they made the correct decision, given my particular set of characteristics.
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Re: Syringomyelia-not causing pain

Postby Judi » Mon Mar 26, 2012 9:11 pm

I had a dr. Appt with a spine specialist. By now, of course, I have been written off as a nut. The visit went something like..."the syrinx is too small to cause pain. It is in your conus, which would NOT cause sudden, acute pain, nor the pain under my shoulder blade" "You were probably born with it" which he modified after I told him I was in a fairly serious car wreck and a high speed toboggan accident. Both times the impact knocked me unconscious. Maybe, he conceded, that would cause the syrinx...but not the onset of pain. I am so frustrated I could just spit. If my syrinx is TOO SMALL at 2.4 cm...the logic would then be how can those with large syrinxes sometimes be asymptomatic? It is terribly discouraging to have drs make this stuff up as they go along. I responded with that I hope someone told my syrinx that it wasn't the cause of my problems...which only made the dr think I was being a wiseguy...anyhow, now I have to decide if I am going to give up on this and just deal with the pain...
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Re: Syringomyelia

Postby Mama_Darwin » Fri Apr 20, 2012 10:52 am

I just wanted to sort of update here. I am heading to NINDS in June for the Syringo/Chiari Natural History study.

In the mean time, I've been to the Cleveland Clinic more times than I want to remember, to see a ns and a neurologist, and for every kind of test you can think of (I'm still having flashbacks from the EMG). The neurosurgeon I saw there for my initial consult concluded that what I have is not Syringomyelia at all, but rather, a persistent central canal. My symptoms, he then concluded, must be due to something else.

I took his word at face value for a while, and began to wonder once again whether my symptoms could possibly be psychosomatic. I am, admittedly, a nervous Nelly, and I take Effexor for depression and anxiety. I began thinking maybe I was just nuts. And I must be really nuts if my psychosis was causing not only pain, numbness, loss of balance and weakness, but incontinence too! So I became depressed. And I wallowed in self-loathing and misery.

I am blessed to have a dear friend who, despite my having become a total pain in the **, refused to let me totally self-destruct. My husband, likewise, has been funny and supportive all along.

I went through all the tests the neuros' minds could fathom, testing my insurance company's resolve, and at the end of it all, despite elevated B12 and low Calcium, the doctors discovered exactly what my local small-town neurologist said from the beginning - I have Syringomyelia, and we need to focus on managing my symptoms.

Anyhow, my (local) neuro increased my Gabapentin, and although I have an appointment with the doctor who oversees my Effexor, I'm now feeling so much better and brighter, I think that the pain was much of what was making me feel so low and slow.

Sorry for rambling on so much.
Idiopathic SM (baby syrinx in the C1-C2 neighborhood, just 2-3mm x 1cm). No CM.
I'm fumby and stumbly. Gabapentin (Neurontin) is my best friend.

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Re: Syringomyelia

Postby reedy » Wed Jun 06, 2012 12:15 pm

Mama_Darwin - Its great that you got in to see Dr Heiss at NINDS. He is a very thoughtful, perceptive neurosurgeon. The NIH provides great care.

If you end up as an inpatient, here are some hints I learned from AKShel:
I ordered the fruit dish, which is all kinds of melons, for breakfast, and watermelon during the day. To avoid the risk of getting too healthy, I also ordered Snickerdoodles at every opportunity. They are great! Its also smart to get a few ice creams or italian ices in store in the floor freezer. Gives you something to look forward to when it gets boring and you are just watching TV feeling a bit suboptimal.
Go to the patient library on the same floor. The people there are super friendly, and it makes a break from the 4 walls of your room. If you are working on motor skills, its also a good, safe little trip.
There's all kinds of interesting art all over the NIH. When you are able to get about, get your visitors to walk you around to see what's on the walls. They seem to rotate the artwork very frequently.
Last edited by reedy on Thu Jun 07, 2012 10:31 am, edited 1 time in total.
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Re: Syringomyelia

Postby marymac » Thu Jun 07, 2012 7:58 am

I have SM from C-6 conus - all the way down. Took 3 NS to diagnose me: first one said Chiari, 2nd said none, and 3rd found the syrinx and showed it to me on the MRI. All 3 said I'm not a candidate for surgery due to osteoperosis. Just finished a 2 year self injection program of Forteo to help with the osteo, and it did. But the SM keeps slowly disintegrating me. Walking is about 1/4 mile, wheelchair around the house to have the hip power to do things outside the house. Take pain meds and muscle relaxers, swim, jacuzzi. Those things at least give me hope I'll see my daughters marry (one in October), and maybe even a grandbaby. I just turned 60: used to seem old but really didn't feel it until 2008 and been downhill slowly ever since. Glad to have ya'll to talk to.
Have the best day you can
Gentle hugs and fake smiles
Mary
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: Syringomyelia

Postby Dcuster » Mon Jun 18, 2012 2:04 pm

Just thought I would jump in on this thread, I have had a syrinx for about 10 yrs so far that I know, T10-T12 width is 1.1 cm plus. I had a shunt put in 2002 and was told I do not have CM or tethered cord at that time. I did not know to much back then, I was led to believe that it was a tumor at the time and they needed to explore etc and that it could also be a syrinx if so they would put the shunt in to help drain the spinal fluid out. I found out much later that this NS really did not know much at all about syringomyelia. I saw another NS in Georgia not to far from Florida where I live and he also said no CM or tethered cord. So back at home and my NL wanted to send me to a pain management clinic, so I went and they did all the stupid injections which later lead to tears in my disc, ruptured disc etc. Then I was back at the NS in Georgia who I trusted the most and he fused from L2-S1 with rods, screws etc. well few years later and then my neck started going. Let this local NS fuse a single disk in my neck C5 only to find out 3 years later that he was to fuse C6-7 and not C5. Then I started having sever pain in my neck and loss the use of my left arm etc had EMG's to find out I had no ulnar nerve's at all. I he then did a corepectomy from C4-C7 with cages, rod's, plates and screws. The whole time still complaining about my leg pains and the weird feeling in my legs when I do a lot of bending, squatting etc. So I asked for more MRI's again only to find out I now have tethered cord at the site of the shunt. My guess it has been there all along which could account for the syrinx in the first place. My NL said it is from scar tissue, who knows because my syrinx went the whole width across my spinal cord. I wish I could put a picture up but I don't have a hosting site for a URL. I will try to see if I can. Anyways, sorry for the long history but I sent all my reports, Dr's notes and MRI's for the past 10 years to Dr. Heiss last week and waiting to hear back from them, so wish me luck. The only way I will be able to see an expert is if I can get into one of the studies.
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Re: Syringomyelia

Postby Dcuster » Wed Jun 20, 2012 8:58 pm

I called today and Dr. Heiss at NIH has received MRI's for the last 10 yrs and Dr's notes etc. How long will it take before I know anything? Does anyone know?
Thanks
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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