Adult Spinal problem -- Syrinx -- anyone else?

[Pixie Dust for Me!]

Hi all,

My DH has just found out that he has a syrinx in the thoracic region of his spine. The diagnosis makes a lot of sense as we have perused the term and symptoms on the net.

Unfortunately, we have found that there are not a lot of neurosurgeons/neurologists who specialize in this area (and we live in St. Louis with a large Research 1 medical center -- Washington University).

What I'm wondering is if anyone on these boards has this condition and can share with us their experiences? To be honest, the prognosis we've read on the net is not great and all the websites, such as NIH, recommend going to a specialist in this field (and they seem to be in Washington State, Denver and Wisconsin).

Thanks,

Karen

 

[alizesmom]

No experience with adults but my 5yr old daughter had a Chiari Malformation and a syrinx as well. She had decompression surgery which meant that they opened up her spine where the brain was pressing down on it. As a result the syrinx has diminished. Basically a syrinx is caused by pressure which causes the lining of the spine to balloon. After surgery Ciara did quite well, several problems disappeared immediately and a few more took a few months to show improvement. We are happy to have had the surgery. Karen

 

[Earstou]

I don't have a syrinx, but do have Chiari, which is sometimes associated with syringomyelia.
If the Denver doctor you are talking about is Dr. Oro, I can tell you he is excellent.

 

[arminnie]

I'm not sure what that is (and I did google it), but I have recently been diagnosed with a cyst on my spine. It is right where the sciatic nerve is (4 and 5 disks) and the pain has been excruciating.

The University of Arkansas at Little Rock is very well known for it's neurological surgeons. People come from all over the world - but I think they deal more with things closer to the brain - but I would check them out as that is not too far from you.

My sister has had several holes in the lining of her brain and has had successful surgery in Little Rock. (totally different I know) Good luck.

 

[Madhatter family]

I have a syrinx (actually 3, one in each section of spine) with no Chairi.

I am currently asymptomatic (mostly). The prognosis on the internet IS depressing. However talking to my neurosurgeon (who is the head of the NSA in Illinois) she sees tons of these and very few develop major problems. If they can determine what caused it (a Chiari etc.) then treating the cause can help and is preferred over the shunting procedure. She did tell me that she had 1 patient (in 20 years of practice) who did have their symptoms go away after surgery, but as you know I'm sure, symptoms are usually permanent even if the syrinx is corrected.

Of course the first question I asked was "what about Disney?"
She told me no coasters (obviously) but other than that my only restriction at this point is no vasalva movements (straining). I know I am EXTREMELY lucky and thank God everyday that I have a "meaty spinal cord" (her words).

If your DH is symptomatic, I would see if you could have your films sent to one of the specialists (I was leaning toward Oro in Denver if I got bad news). And see if they can give you any guidance.

Sending lots of Pixie Dust your way! This is a very scary invisible disease. We can hope that since they are finding more of them due to MRI technology that they will soon find a treatment.

 

[Pixie Dust for Me!]

Update: Saw the neurosurgeon and have had his films viewed by other specialists. All agree that he has a small syrinx without a chairi which is good news. All also agree that his thoracic pain is likely more muscular than structural. He is doing lots of PT now and that is helping. His syrinx will be monitored via MRI every 6 months for the next two to three years and then monitored yearly thereafter until he is 50. Once he hits 50 they will monitor it every 2 to 3 years unless he develops further problems.

The thoracic problems are likely caused by the structural problems in the lumbar area so, we venture on.

Thanks all for your responses. It has been a very scary few months, but we are better!

K

 

[brat]

Syrinx caused by a tumor at age 10.

 

[Stelio’s Cure]

I’m diagnosed with components of Syringobulblia, Syringomyelia and Hydromeylia( which I thought was specific to infants and newborns so is the specialist in Miami Dr. Green telling me that I’ve had this since birth I have a steric‘s between T4 and T 10 it’s narrow it only has to increase by a millimeter to be excruciating plus I’ve got facial numbness vertigo lumbar pain severe stenosis in the cervical area it’s a grocery list and I’m trying everything and I have experience in the fitness fields anatomy physiology and then I’ll fields some days it takes everything I got, to keep from breaking

 

[Stelio’s Cure]

Dr Green, At the University Miami Jackson Memorial Hospital is the only specialist I know on the field and Florida but he is significantly late in his career and he no longer does surgery by himself but he seems to be the expert on all those best I can tell you

 

[Allnate]

I have a syrinx (actually 3, one in each section of spine) with no Chairi.

I am currently asymptomatic (mostly). The prognosis on the internet IS depressing. However talking to my neurosurgeon (who is the head of the NSA in Illinois) she sees tons of these and very few develop major problems. If they can determine what caused it (a Chiari etc.) then treating the cause can help and is preferred over the shunting procedure. She did tell me that she had 1 patient (in 20 years of practice) who did have their symptoms go away after surgery, but as you know I'm sure, symptoms are usually permanent even if the syrinx is corrected.

Of course the first question I asked was "what about Disney?"
She told me no coasters (obviously) but other than that my only restriction at this point is no vasalva movements (straining). I know I am EXTREMELY lucky and thank God everyday that I have a "meaty spinal cord" (her words).

If your DH is symptomatic, I would see if you could have your films sent to one of the specialists (I was leaning toward Oro in Denver if I got bad news). And see if they can give you any guidance.

Sending lots of Pixie Dust your way! This is a very scary invisible disease. We can hope that since they are finding more of them due to MRI technology that they will soon find a treatment.

Hope all has been well. Just was diagnosed with a syrinx in my C6-T1 anything you recommend how has it progressed for you what’s helped and what hasn’t I know it’s been 11 years now essentially hope all is well!

 

[Allnate]

I’m diagnosed with components of Syringobulblia, Syringomyelia and Hydromeylia( which I thought was specific to infants and newborns so is the specialist in Miami Dr. Green telling me that I’ve had this since birth I have a steric‘s between T4 and T 10 it’s narrow it only has to increase by a millimeter to be excruciating plus I’ve got facial numbness vertigo lumbar pain severe stenosis in the cervical area it’s a grocery list and I’m trying everything and I have experience in the fitness fields anatomy physiology and then I’ll fields some days it takes everything I got, to keep from breaking

How has it been for you. I hope you’re managing and doing the best you can. I just was diagnosed with a syrinx from C6-T1