Syringomyelia???

[Steph P]

I am a c7/t1 complete sci. I have had recurring problems with my syrinx. I have had four surgeries which have included: detethering the cord, laminectomy, expansion graft, and shunt placement. I scar real bad and things get all messed up again and I scar over my shunt, thus causing the cyst to grow again and my cord gets all tethered up. I have such bad neuropathic pain and weakening in my hands. I have heard of antoher procedure where they "unroof" the syrinx by cutting your spinal cord and sewing it open. Can you tell me of this or any other procedure that might help me.

Thank you,
Steph

[SCI-Nurse]

I will ask Dr. Young to respond to this.

Where did you have your surgeries? Have you considered going to either the Miami Project or Craig Hospital? Both are considered the leading centers in the treatment of both tethering and syringomyelia.

(KLD)

[Steph P]

Hi KLD,

I have had two of my surgeries at the Univeristy of Washington Medical Center and the two most recent ones at Harborview Medical Center in Seattle, WA. They were performed by Doctor Richard G. Ellenbogen, M.D. He is Chairman of UW Neurological Surgery, Chief of Neurosurgery at Harborview Medical Center and President-Elect of the Congress of Neurological Surgeons. Have you heard of him?

Steph

[thehabs]

I recommend going to Craig & seeing Dr. Falci. He and his staff are the best!

[Steph P]

Hi Kld,

Will Dr. Young respond here??

[Tanya2]

Hi Steph,

I have no advise for you unfortunately but was diagnosed with syringomyelia from C7-T4 and then T7-T11 last week due to a spinal cord injury from cord compression from an osteophyte at C 4. My story to get my diagnosis is very long but finally I have it and am interested in meeting others who have SM due to SCI. I also have a twin sister with incomplete at C6 7 with central cord syndrome from a car accident. I am sorry to hear you are having so many difficulties with keeping it decompressed.

Tanya

[Steph P]

Hi Tanya,

I too have a twin sister. (fraternal)

[Steph P]

Dr. Young,

Have you heard of the technique "unroofing" the syrinx?

[Tanya2]

Hi Steph, Wow, another twin that is cool. I haven't heard of the unroofing technique Steph, what is it exactly?

Tanya

[Wise Young]

Dr. Young,

Have you heard of the technique "unroofing" the syrinx?

Yes, it is a reasonable procedure if the syrinx is not too long and the dorsal side of the syrinx is relatively thin, allowing the surgeon to cut it and lay the cyst open. While it may prevent the cyst from expanding, it may not eliminate the original cause of the cyst, i.e. the obstruction of CSF flow in the subarachnoid space around the spinal cord. While it makes the central canal continuous with the CSF in the surrounding tissues, if the CSF obstruction at the injury site, one possibility is that it will lead to syrinx formation above and below the injury site.

In my opinion, the best procedure to try at first is meticulous removal of all adhesions between the arachnoid and the spinal cord with careful reconstruction of the subarachnoid space so that CSF can flow. Even without a shunt, this has been shown to eliminate the cyst in a majority of cases. This is the least invasive of the spinal cord. Many surgeons put in a shunt anyway. I am not certain that this is necessary. Since much previous experience suggests that a shunt along does not help and a shunt itself may cause some problems, this probably should be reserved as a second stage procedure if the first step is not effective. I think that unroofing the syrinx should be the third and backup step if the first two do not work.

Wise.

[Tanya2]

Question for Nurses or Dr. Young

Thanks Dr. Young for the information you provided on the treatment for SM. I appreciate this information. It gives me a possible guide regarding the options available for treatment. I have a question though. My syrinx is two distinct ones. One from T1-4 and then from T7-11. How does the fact that it is not continuous affect the treatment options? What I mean is if I end up having to have a shunt how will this separation affect this procedure?

Tanya

[Steph P]

Thank you Dr. Young, I appreciate the post.

[Danyap]

Hi Steph, I am a newbe here. I am also a fellow Washingtonian, originally from San Francisco. I have a syrinx at the exact location as you. I work for a HMO that of course is going to do my surgery on 2/6. I hope you have options or can cut and paste Dr. Young's suggestions to your NS.
Good to meet you, I will keep you in my prayers. Danya

[Mchank]

How to tell what is happening

Hello everyone.
Thanks for this forum.
I have had an arachnoid shunt installed at c7 sor a syrinx after I came back from a snowmobiling trip (my 4th as a para), when I took off my gloves, my hands were rubbed raw and I didnt feel it happening. This surgery was done in May of 2002. My original injury is T6-T12 due to an astrocytoma of the spine. The para deal happened in 1992.

I am working and still active. However, recently I have been feeling stuff which I havent felt before....i.e. a very prickly(this is more uncomfortable than one may think) like stinging in my right leg, (I havnt felt stuff in my right leg in years), my arms and hands have been tingling more recently, and the tingling in the torso has also increased. I had a cervical and thoracic mfi w/ and w/o contrast done in April. The report is that it was status quo. How is a person supposed to decide if something crazy is going on or what? Since I work and do have insurance (for which I am very grateful for), the co-pays for MRI's can get costly.
You know I really am not worried about running a mile anymore, 'cause I can get in enough trouble from a chair!......The discomfort is what sucks! .....Any ideas?

[dmaynard]

In my opinion, the best procedure to try at first is meticulous removal of all adhesions between the arachnoid and the spinal cord with careful reconstruction of the subarachnoid space so that CSF can flow. Even without a shunt, this has been shown to eliminate the cyst in a majority of cases. This is the least invasive of the spinal cord. Many surgeons put in a shunt anyway. I am not certain that this is necessary. Since much previous experience suggests that a shunt along does not help and a shunt itself may cause some problems, this probably should be reserved as a second stage procedure if the first step is not effective. I think that unroofing the syrinx should be the third and backup step if the first two do not work.

Wise.

What doctor should I consult with that takes the above approach mentioned? I have a shunt already, which helped short term but did not manage to prevent my syrinx from reoccurring.