Recent disagnosis of a syrinx 1st time poster

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Recent disagnosis of a syrinx 1st time poster

Postby Radiance » Mon Jun 18, 2007 4:26 pm

Hello

On Friday June 15th my husband was diagnosed with a syrinx on his spinal cord and over the weekend I have been trying to find out as much as I can and thankfully found this wonderful message board. So before I even begin thank you for listening.

My husband had his regular six month check up with his cardiologist at the beginning of May. He mentioned to him that he had a numbness on his right side from his belly to his back and down his inner right leg. My husband was not in pain only a numbness. He mentioned it only because he thought it might be a blocked artery or something. The Dr did a couple of quick tests and said he would refer him to a neurologist. The neurologist did some more tests and ordered an MRI. An MRI was done and a few days later he was called back to the hospital for a 2nd MRI this time injecting him with dye.

The neurologist told us what a syrix is and that when they did the 2nd MRI with the dye they were specifically looking for a tumor....which they did not see. My husband has never had a back injury. He said the treatment for this is surgery and is referring us to a surgeon at the Spinal Cord Unit at Vancouver General Hospital. The Dr said this is major surgery and my husband can expect to be off work for months.

So can anyone give us any idea's on what to expect. How long is the surgery. How long will he be in hospital. How long is recovery. We have no idea how big this syrinx is although the Dr did show us the MRI.

So that is our story. Thanks for listening and taking the time to read this. I also wanted to say that after reading some of the posts and messages I dont feel quite so scared.

Yours truly
Radiance
Radiance
 

SURGERY

Postby razzle51 » Mon Jun 18, 2007 5:45 pm

Does he have Chiari too ? Is that the surgery or is he having a shunt put in . Usually there is no surgery for a Syrinx unless the SPINAL fluid is blocked .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby kiminfla » Mon Jun 18, 2007 5:46 pm

Radiance, Welcome to the board! I have Chiari, no SM; just wanted to let you know that this site is full of a lot of valuable information and this message board is a wonderful place to get support -- we're here for you! Being newly diagnosed can be a scary place to be but I think it's great that you're educating yourselves -- knowledge is power. I hope the appt goes well. I'm sure someone with SM will be along soon to give you more info. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby cash71 » Mon Jun 18, 2007 5:57 pm

Hi Radiance and welcome to the board. That is so wonderful that you are seeking out more info for your husband and yourself. Getting educated is the only way to make sure that you are going to receive proper care. Some great videos to start learning are on www.thechiariinstitute.com just click on the videos tab

I am on Vancouver Island and was just over at the Spinal unit at VGH a week ago. Who are you seeing, Dr. Boyd? I don't know all the specifics of your husbands case but if it is just a syrinx and he is not having a lot of life altering symptoms surgery would not generally be done. The only real surgery there is for a syrinx is to place a shunt into the syrinx and this operation has a LOT of risks itself as you have to cut thru the spinal cord to place the shunt. Also some people have ongoing issues with shunts blocking and becoming ineffective so it would not be something that would be attempted unless the symptoms were severe enough to be life altering.

Has your husband been screened for cm or had a head MRI. 70% of syrinxes are caused by cm so that is why I am wondering. The surgery for that is a PFD (posterior fossa decompression) I have not had any luck finding anyone knowledgable in BC. I am travelling to NY this week to the Chiari Institute for an expert opinion on my case. I am amazed at how fast your husband was able to get MRI scans done. I had a 6 month wait for mine.

There is also a group starting on facebook.com which is the Canadian sm network. It is small so far but growing. At this point there is a real lack of expert care in Canada and the only way we will ever change it is by sticking together. So check out the group too if you can.

I'm happy to answer any specific questions you have about docs that I have tried etc. Just pm me.

Again, welcome to the board and I'm really glad that you found us.

Caroline :D
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Sandy » Mon Jun 18, 2007 7:07 pm

Radiance,

Don't panic! I'm an SM'er too. You're doing great, just by finding us here is a big start. Wish you the best, and welcome to the board.

love,
sandy :D
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Postby angie7 » Mon Jun 18, 2007 9:47 pm

What kind of surgery is he having? I assume a shunt and like a previous poster mentioned, unless he is in severe pain and can not function well, I wouldnt risk it. The risks associated with a shunt are very real and shouldnt be taken lightly. Also like she mentioned, I would recommend a head MRI for ACM since this is the number 1 cause of syrinxs. It is better to have all your ducks in a row before going under the knife, kwim?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Radiance » Tue Jun 19, 2007 12:46 am

Thank you everyone. To be honest we dont know what kind of surgery they are talking about yet. Yes they did do a MRI of his head but I dont remember that being mentioned. We will just be patient and wait to hear what the surgeon has to say. One other thing I remember the Dr saying is that there is swelling (I think in the area of the syrinx). Once we get more answers I will come back and fill you in more. Thanks again if feels good to have support.

Radiance
Radiance
 

husband

Postby razzle51 » Tue Jun 19, 2007 11:43 am

well if there is swelling there must be a blockage . Keep us posted
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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