Syringomyelia & split cord syndrome?

[rod44]

Ok I would like to express my gratude to everyone for there kind wishes and good thoughts in my earlyer post....and appoligise for not geting on and posting sooner.
Yesterday and today have been hectic as you will understand when you read on.
So I had my appointment with the NS yesterday, here is what happenes....

He confirmed that an MRI scan I had done showed a mild Chirai Malformation of 4mm and a 7mm Syrinx and "split cord syndrome"extending from C5 > T2. He feels that the CM and Syrinx has been there from birth, he feels that a road accident I was involved in in 2006 has caused my recent symptoms and he feels that some action needs to be taken to prevent further degeneration of my condition.
MRI also showed advanced Disk Degeneration for one of my age.
Nerve conduction test and urodynamic testing show nerve degeneration related to the location of the syrinx.
A VNG test showed downbeat Nystagmus consistent with a central vertigo.

On examination yesterday he noted that I had no reflexes in my lower limbs, on my last physical exam by the NL in September it was noted that my reflexes were poor and so he said that todays findings were a cause for concern as it showed that my condition was progressing, he also noted reduced reflexes in my upper limbs especially in my right arm in todays exam.
He ordered a full spinal MRI and CSF flow studies witch I have had done this morning.
He has organized a case conference for monday morning to discuss how to proceeded. He has said that he will most likely place a shunt in the cyst for the purposes of draining it using key hole surgery, he also feels that the vertigo needs to be further investigated prior to surgery to rule out a more sinister cause even though there were no further anomalies found in the brain MRI. I have also had an X Ray of my shoulders to rule out joint atrophy.....

So has anyone experence with "split cord syndrome".....

[rod44]

Thanks Elizabeth.....

When I was with the NS he mentioned the Split Cord in passing, in fact he was reading out loud my MRI report and I picked up on it but did not wish to be rude and interrupt him then when he was finished reading he started firing questions at me and I forgot to ask him about it. lol I thought of it out side the hospital and it was to late then to ask....
because it has taken so long to get the DX and I have seen so many specialists who were not interested when my condition did not fall into there respective disciplines they just wanted to send me on my way. when my NS actually took an interest and spoke with some authority on the whole Chiari and Syrinx thing it was a surprise, indeed a shock, he mentioned early on in the appointment that he felt I would need to have surgical intervention he went on to say that he would arrange a case conference with the different people who would be involved in my treatment to discuss my case, this caught me off guard as I went to the appointment not knowing just what to expect but expecting the same old disappointing  sorry we cant help you that I have become accustomed to. The info you sent is helpfully and I am grateful to you for this and also to selma for some info she sent in a pm as well.

Hopefully he will do as he said and phone me on Monday then I can pick his brain on this and find out about the MRI scans and CINE flow study I had done on Wensday....
I will update you all when I have news

thanks again, I know you are having your own share of worries and it was very thoughtful of you to do this...

I still think your a DB mind so some things don't change LAMO!!!

Ray :)

[n40066]

In general, the long-term prognosis for patients with SCM is favorable.[4,11] It is also clear from our study that patients with SCM may have multiple causes of tethering associated with their congenital anomaly and that these causes need to be carefully examined by the initial evaluating neurosurgeon. Reoperation will almost certainly be required if these secondary lesions, such as fatty filum and dorsal tethering bands, are overlooked. However, a lower rate of retethering is expected if the spinal cord is adequately released at the initial operation. Because we were surprised to find one patient with a Chiari Type I malformation and extensive syringomyelia in association with her SCM, our neuroradiologists therefore now screen all suspected SCM patients by conducting sagittal cranial and spine MR imaging as part of their standard workup. The embryological and causal relationship between these disorders is not clear. We have been struck by the number of patients who eventually required surgery for progressive scoliosis. Most of these patients displayed no progressing neurological deficits, and it is presumed that the bone anomalies themselves, perhaps accentuated by previous bone removal, led to this outcome. We have not investigated the role of segmental fusion at the time of initial SCM repair, although it may be one way of preventing this late-onset complication.

Abbreviations used in this paper: MR = magnetic resonance; OSD = occult spinal dysraphism; SCM = split cord malformation; TCS = tethered cord syndrome; VB = vertebral body. 1997; all operations were conducted by the senior author.

[rod44]

thanks meg ;)
Ray

[merlot3106]

I am really happy to hear that your appt. went well. It seems like you are in good hands. I will pray that they continue to help you so you can be on the road to recovery :)

Meg

[rod44]

Thanks Lu, it has taken some time but I am geting there, it is all good so far.

Ray

[lu7997]

Ray I am so glad to hear you are getting the help you need and deserve.

: )

[rod44]

I would appreciate that as most of what i found was on pediatric patents

Ray

[selmaS]

I know what u mean...and I know we all want to be prepared for the NS visits with our questions, but until we know what he is thinking we don't know the questions.....

As soon as I find the info I saw b4 I will pass it along just in case it is different from what u saw : )

"selma"

[rod44]

Thanks selma i appreciate that, I googled it and found it is related to tethered cord but there was no mention of that by the NS, It came out of the blue and knocked me for six, did not know what to say.

Ray

[selmaS]

Hey Ray....I will look up the spilt cord info...I know I saw it somewhere.

This is y I say it is hard to have questions prepared...we sometimes get blind sided with a different dx or an additional one that we just were not prepared with questions for.

I am sure we can get some info and questions for ur NS.

HI Shannon nice to see u back !! : )

"selma"

[rod44]

Thanks Shannon, ya the split cord thing was kinda sprung on me yesterday, i got such a shock and was kinda freaked out going to see the NS anyway I forgot to ask him about it lol, you know how it is....

Ray

[shanmomof3]

Praying for you my friend! Don't know about the split cord, just wanted you to know I was thinking of you!