[Anthony]

I am c 4-5 quadriplegic who was recently diagnosed (via MRI) with a major syrinx. I'm an incomplete injury, and have noticed sensation loss and some mobility issues... not to mention ridiculously serious neck pain. Has anyone out there had surgery for this, and if you have what was your experience, and would you have any recommendations for me i.e. doctors, treatment, etc.. Thanks in advance.

Peace,
Anthony

[Steviewo]

Hi Anthony,

I am T4/5 complete and was diagnosed with a syrinx in 1996. I was getting a lot of pain in my arms and back, was sweating a lot down one side, getting pins and needles in my hands and also had tingling sensations from one side of my head down to my arm.

I had it operated on in 96 or 97 (can't quite remember). They basically just put a surgical insision to allow it to drain, and I have to say that this was quite succesful, as far as most of my symtoms were relieved apart from the occasional tingling/itching in my head and the very occasional pins and needles.

However the last couple of years I have been experiencing loss of sensation and weakness in my right hand, especially when it is cold and I am starting develop a slight 'clawing' in the fingers and struggle to do anything that requires any dexterity with it.

I have just had another MRI and saw a neuro consultant and it turns out that the syrinx has started to enlarge (it is widening). Basically I was given 2 options:
1 - Do nothing but it will inevitibly get worse.
2 - Have an operation called a 'shunt' where they insert a permanent plastic drainage tube at the top of the syrinx to stop it getting worse burt will not likely reverse the neve damage already caused. But aparantly this operation will carry with it about a 10% risk - I assume that of being further paralasys at higher level.

I have opted to go for option 2 as it appears to be a no brainer really!

[yecaliam]

Anthony, on May 5 2009, 04:41 PM, said:

I am c 4-5 quadriplegic who was recently diagnosed (via MRI) with a major syrinx. I'm an incomplete injury, and have noticed sensation loss and some mobility issues... not to mention ridiculously serious neck pain. Has anyone out there had surgery for this, and if you have what was your experience, and would you have any recommendations for me i.e. doctors, treatment, etc.. Thanks in advance.

Peace,
Anthony

My 2 1/2 year old grandson was diagnosed with a cancerous tumor in his spinal cord in February 2009. The tumor went from T2 to T11...it had a syrinx on both ends. In January 2009 we noticed he was tripping, falling and even crawling. After taking him to the doctor he got an MRI that detected the tumor...so within a week he was referred to Dr. Edwards at Stanford Medical Center in California. Because of the size of the tumor...it had to be removed immediately as it was causing nerve damage. He was in the hospital for 2 weeks then sent home for recovery and physical therapy. In mid May...he went back to Stanford for a followup MRI. The MRI showed the cancer had not changed but there were 5 syrinx that had grown in his spinal cord where ther tumor was removed. At this time they just want to keep an eye on them with another MRI in three months. They are concerned the syrinx will grow and cause nerve damage and if that was the case...it would require surgery to remove them.

Dr. Edwards at Stanford's Lucille Packard Children's Hospital was great...the whole hospital experience was great...very nice people that really care.

[Anthony]

Thanks for answering some of my questions. It looks like I'm going to be having surgery sometime towards the end of this month -- it too, is a no-brainer given that things are progressively getting worse. Not too fond of having a shunt put in my spinal column, but if it can arrest the symptoms, c'est la vie. It's not very likely I'll get back what I lost, but again, c'est la vie.

I hope things are successful for each of the respondents and, again, thanks for responding.

[Steviewo]

Well I've had my surgery (on the 12th August) and been home now since the 15th and so far so good!

I'm having a few strange symtoms at th moment such as pains in my head (in all different places) but the surgeon assures me that this is normal as the syrinx is draining.

Also the 40 metal clips in my back are hurting like hell every time I move!

The good news is that my symptoms in my right arm and hand have not got worse and there is a very marginal improvement.

Infact the surgeon told me that as soon as he started to go to work on it the syrinx was visibly collapsing.

In the end there was a bit more to the operation than I was first told - I had a laminectomy at the bottom of my syrinx in 1997. This had now closed up so was re-opened during my new op'.

There was then a shunt placed at the top of the syrinx (which I was expecting as I said previously).

Additionally I had another temporary drainage tube for a couple of days whilst I was in hospital, which was located outside the spinal cord, (at the exit of the syrinx I guess) taking the fluid out of my body. The bag that this was draining into contained about a 100ml of fluid.

I've just got my fingers crossed that all stays the same or gets better.

This post has been edited by Steviewo: 19 August 2009 - 10:38 AM

[ClaraTaylor]

Fingers crossed for you!!

[Anthony]

Steviewo, on Aug 19 2009, 03:36 AM, said:

Well I've had my surgery (on the 12th August) and been home now since the 15th and so far so good!

I'm having a few strange symtoms at th moment such as pains in my head (in all different places) but the surgeon assures me that this is normal as the syrinx is draining.

Also the 40 metal clips in my back are hurting like hell every time I move!

The good news is that my symptoms in my right arm and hand have not got worse and there is a very marginal improvement.

Infact the surgeon told me that as soon as he started to go to work on it the syrinx was visibly collapsing.

In the end there was a bit more to the operation than I was first told - I had a laminectomy at the bottom of my syrinx in 1997. This had now closed up so was re-opened during my new op'.

There was then a shunt placed at the top of the syrinx (which I was expecting as I said previously).

Additionally I had another temporary drainage tube for a couple of days whilst I was in hospital, which was located outside the spinal cord, (at the exit of the syrinx I guess) taking the fluid out of my body. The bag that this was draining into contained about a 100ml of fluid.

I've just got my fingers crossed that all stays the same or gets better.

Thanks for sharing the details about your surgery... very useful. Looks like I will be having my surgery sometime around the third week of September. While it's definitely a no-brainer and the right thing to do, I'm not looking forward to having hardware put in my spine i.e. a shunt. At the very least I'm hoping it will arrest my current deterioration. Again, thanks for sharing. Hope your recovery continues to go well, and, please, post more if you have the time or think about it. Very interesting stuff. Well, to me at least. Peace.

[TheDreamSeeker]

Anthony, on May 6 2009, 12:41 AM, said:

I am c 4-5 quadriplegic who was recently diagnosed (via MRI) with a major syrinx. I'm an incomplete injury, and have noticed sensation loss and some mobility issues... not to mention ridiculously serious neck pain. Has anyone out there had surgery for this, and if you have what was your experience, and would you have any recommendations for me i.e. doctors, treatment, etc.. Thanks in advance.

Peace,
Anthony

Anthony

Hear it goes. Steven has skin flap surgery done to his bottom and while recovering in a nursing home he was constantly complaining about neck pain and they blew him off. State owned facility which I swear he will never go back to... Once recovered he attended rehab at Mayo and they found his spinal cord was filling up with fluid (posttraumatic syringomyelia). He had lost all strength in his right hand to the point he could not even open a bottle of soda and his fingers were starting to curl, severe neck pain and pins and needle feeling in the arm. He is a T5 complete with also tons of hardware in his neck due to breaking that so it was a gray area for surgery but all went well. They went ahead with syringosubarachnid shunting. I would say it took about 5 days for him to recover and return back to rehab. He said that was the worst pain he has ever experienced in his life. The doctors made it very clear that if left unattended much longer he may not be here with us today. Strength was regained pain was relieved for about 3 months until all the symptoms have returned. A MRI had shown that he was filling up again but his doctors once again are worried about that gray area. They may have to go in and install a longer shunt but he has his strength it is the neck pain and numbness in two fingers that is bothersome to him. I know they have told him it is a chronic pain that he has to live with. I am praying for the best when we return in December for another MRI. My question to anyone out there is have you had this procedure done twice and if so what was your outcome. Best of luck to you and please keep us posted.
Stevieow did you do through with that second surgery?

[Anthony]

Thanks to all of you who responded to my post -- much appreciated. Very helpful. I recently had my surgery and I wanted to post something about my experience -- may be helpful, maybe not, it all depends. Anyway, here's a link to my blog and a pretty in-depth breakdown of my thoughts. Happy holidays and happy new year... and most importantly good luck to anybody who's faced with this situation. Peace.

http://fasterbarnacle.com/2009/12/26/syrin...-vs-the-syrinx/

[JohnnyO]

Anthony - it's great things are working out for you since the surgery. I read your blog and ironically, I had a shunt put in place by Holly and Batzdorf in January of this year. It was placed right around T5/T6 such as yours. I think Batzdorf rocks....very knowledgeable and took the time to sit down and explain the syrinx and possible solutions. I'm not familiar with the other option you mentioned - ventriculostomy.

Do you have any information or sites you can point me to with information on it?

I hope you're able to get on the slopes this season.

Johnny

[qbounce]

I'm going to UCLA on Jan. 18th to look into my muscle loss and sensation loss problems also. Unfortunately, neither MRI's nor CT-Scans are showing any true signs or red flags on why I'm dealing with these issues. I've corresponded briefly with Craig Hospital in Colorado under the hunch that I may have a tethered cord. They did get back to me with a positive posibility

Guess I'll just have to wait and see, but it is frustrating . . . . even more so when there's STILL no true diangosis found yet.

From what I understand regarding a "Tethered Cord" is that, according to Dr. Falci, it may not show on an MRI. In fact, the only thing they may have to go by is your symptoms. And Anthony, judging by the problems your STILL experiencing with your arm continuing to be weak, who knows? You may have the same thing. I mean, your cord was definately tethered to begin with, which formed the syrinx/s.

Judging by your outcome, and the fact that I don't have a syrinx, now I'm not so sure whether I'm wasting my time going to UCLA or not. I've been doing this much to long to see more doctors who won't just bite the bullet and rip me apart, in order to de-scar my cord and sew me back up.

BTW, did you see the Dreamseekers post just before yours? In New Mobility magazine's March issue this year (2008), he mentions MANY many shunting surgeries being reshunted multiple times before they come to him to "Untether" the cord. It was a very informative article regarding syrinxes and tethered cords. Both carry the same symptoms, so either one is an unfortunate reality of SCI.

Good luck to all.

[Anthony]

qbounce, on Dec 27 2009, 03:58 PM, said:

I'm going to UCLA on Jan. 18th to look into my muscle loss and sensation loss problems also. Unfortunately, neither MRI's nor CT-Scans are showing any true signs or red flags on why I'm dealing with these issues. I've corresponded briefly with Craig Hospital in Colorado under the hunch that I may have a tethered cord. They did get back to me with a positive posibility

Guess I'll just have to wait and see, but it is frustrating . . . . even more so when there's STILL no true diangosis found yet.

From what I understand regarding a "Tethered Cord" is that, according to Dr. Falci, it may not show on an MRI. In fact, the only thing they may have to go by is your symptoms. And Anthony, judging by the problems your STILL experiencing with your arm continuing to be weak, who knows? You may have the same thing. I mean, your cord was definately tethered to begin with, which formed the syrinx/s.

Judging by your outcome, and the fact that I don't have a syrinx, now I'm not so sure whether I'm wasting my time going to UCLA or not. I've been doing this much to long to see more doctors who won't just bite the bullet and rip me apart, in order to de-scar my cord and sew me back up.

BTW, did you see the Dreamseekers post just before yours? In New Mobility magazine's March issue this year (2008), he mentions MANY many shunting surgeries being reshunted multiple times before they come to him to "Untether" the cord. It was a very informative article regarding syrinxes and tethered cords. Both carry the same symptoms, so either one is an unfortunate reality of SCI.

Good luck to all.

Thanks for sharing and, yeah, I hear you about the doctor thing... it's a drag to be sure. Surgery, no matter what it is, is a challenge... certainly anything related to the spinal cord. I'll check out the article you are talking about -- sounds interesting. Good luck with all your stuff and please keep us posted. Peace. Happy holidays.

[Anthony]

JohnnyO, on Dec 27 2009, 01:59 PM, said:

Anthony - it's great things are working out for you since the surgery. I read your blog and ironically, I had a shunt put in place by Holly and Batzdorf in January of this year. It was placed right around T5/T6 such as yours. I think Batzdorf rocks....very knowledgeable and took the time to sit down and explain the syrinx and possible solutions. I'm not familiar with the other option you mentioned - ventriculostomy.

Do you have any information or sites you can point me to with information on it?

I hope you're able to get on the slopes this season.

Johnny

Johnny,

Yes, I thought they were great doctors -- very patient, very informative. As far as the other treatment goes, I googled it. The doctor who suggested it thought it might be a possibility given the extreme size of my syrinx, but told me it would be difficult to find stuff about it -- which was true. As I said in the blog, it was a difficult decision, but ultimately I decided my odds might be better with a shunt... we'll see. Let me know if I can answer more questions in terms of specifics. And, yeah, I hope to get on the slopes soon. Peace. Anthony.

[dangerousdave]

Man those syrinx are strange things, it (now they) show up on my MRI scans but are unobtainable to find.
So my syrinx are as strange as me
After several attempts to locate and drain, my team has decided thats it
Unless somin dramatic happens, just accept em
Then my injury has always been weird and eventful
I've confounded and confused clinicians, neurologists, surgeons, professors and trials teams.
Don't be dismayed
Most syrinx are found and drained to relieve nerve pressure

Good Luck

[Hickstar]

In 1997 I started experiencing weakness in my right arm so I had an MRI scan after which I was told I had syrinx on my spinal cord which needed operating on, I had the operation to insert a spinal shunt which was a great success and virtually all the symptoms I had been experiencing what it went away. However in about 2003 I started experiencing weakness and loss of feeling in my right arm and leg, I went back to the hospital for another MRI scan and they told me the syrinx had got bigger and I would have two have another operation to insert a new shunt... So in 2005 I went in for another operation, after the operation the doctor told me when they opened me up and a lot of fluid came out of the syrinx so they put another shunt in but straightway I started to deteriorate and lose more and more power and feeling in my arms and legs, and I am sorry to say that now I am paralysed from the neck down.

[dangerousdave]

Sorry to hear your tale Hickstar
Just goes to show how complicated our SCI are
Our specialists are brilliant at what they have done, but they too have limitations of knowlage

LOL