SM Shunt Information

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Re: SM Shunt Information

Postby Torreypines » Tue May 12, 2009 1:48 pm

I got a syringosubarachnoid shunt in Sept 2006, performed by Dr. Parrent in London, Ontario.

When I first woke up from the surgery, I couldn't feel my right leg at all, which was terrifying at first until they got me to try wiggling my toes and I could. For a few days, I couldn't judge where my right leg was at any time, including when I was walking, and when walking I couldn't tell if my knee was bending or not. But other than that, I felt incredible for the first little while after the surgery, better than I'd felt in a long time...but then all my old symptoms came back full force. For the longest time my symptoms were stable and didn't worsen, but over the past several months I have had worsening of the old pains and have had new ones appear. The feeling gradually came back for the most part in my right leg, but my right foot is still numb, especially from the balls of my foot to the tips of my toes. It feels like when you've been to the dentist and the freezing is starting to come out. I have totally regained the proprioception in my right leg, but it always hurts worse than the left, is stiffer feeling than the left, and tires more quickly than the left.

My most recent MRI (Feb of this year) shows that the cervical syrinx has shrunken significantly, but it did not collapse or disappear altogether. (Dr. Tator says this rarely if ever happens). It is still there, just a lot smaller.
Idiopathic SM C4 to T1 and T2 to T11. DDD C4 to T1. Cervical laminectomy and duraplasty May 2005. Syringosubarachnoid shunt Sept. 2006.
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Re: SM Shunt Information

Postby marymac » Mon May 18, 2009 9:21 am

Hey Rhonda:

You are feeling the love now, eh? I really admire you. All the doctors have told me I am not a candidate for surgery. . . not sure if it's age,osteo pretty bad, weight, or too much for them, so here I sit with meds on an electric blanket (and I live in Florida).

My husband must be TiffanyO's evil twin: same thing. Haven't had as much as a hug since the dx: like he turned into a bully or madman overnight. Told me I've ruined HIS future. So, since we can talk about numb butts, haha, How did you ever get the courage/energy to get divorced with this? Now you're superwoman to me.

We should start a dating/hugging group amongst ourselves: what do you think? We wouldn't have to explain, but could hold hands, hug, cry and laugh together at least. Oh and to just sleep next to someone . . . It's akin to starving. . .

Sorry about the whining: the rains make me immobilized and now I get to sit here with him all day hating on me, oh boy.

Ya'll are lifesavers.
Love, hugs, fake smiles,
Marymac
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: SM Shunt Information

Postby tattoodlb1 » Fri Aug 07, 2009 4:49 pm

bump
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: SM Shunt Information

Postby MichelleW » Tue Aug 18, 2009 11:41 am

I saw the neurosurgeon, Dr Fourney, in Saskatoon and the update is that I need surgery, very soon.

There is a tumor at c3 which is very VERY tiny, not big enough to even biopsy. So tiny that the neurosurgeon isn't even sure he'll be able to see it if he opens me up, or I guess I should say WHEN he opens me up. I am having a shunt placed at the 3rd vertebrae in my neck to drain the syrinx that runs from c1 to t8. It will drain either into the cavity where the spinal fluid should be, or into my abdomen, depending on how the surgery goes. he said it's very risky, and dangerous to place a shunt that high because of the chance of damaging more nerves in that compacted area of the neck, but being that the tumor is there, he needs to go in and deal with it anyway, and doesn't want to open my spinal cord a second time down lower to place a shunt. Also, being that the syrinx has a lot of sections to it, he isn't sure they will all drain at once.

He said the operation itself will be painful, being that they cut through a lot of tissue in the neck, remove bone and cut into a lot of muscles to get to the spinal cord. But he said the worst part could be the months of pain afterwards from the inflamation of nerves and the cutting of the muscles in the neck. The damage to the nerves could affect my breathing abilities, or my walking and anything and everything in between, or it could just cause random pain and burning throughout my body. He said it could take several days, weeks or months, even years for it to get better, if it does.

If I don't have the surgery, it is just a matter of time until I am in more and more pain that will become unbearable, and there will be no fix for it. Eventually, given that I have such a large syrinx in my spine, without intervention now, I could and likely would become a quadriplegic.

My surgery will be in September, but I don't know exactly when yet and I will be in the hosp 2-6 days depending on the amount of nerve damage after surgery. I have no idea about rehab, etc... until after we see what kind of damage the surgery does. I also don't know about chemo or radiation. That will depend on whether he can locate the tiny tumor and remove it or not.

Once again, I wait, but at least now I know the plan for action. And now that I do know, I am more terrified than ever before.

I just want to be a mom to my kids, a wife to my hubby and a daughter to my parents. I don't want to be incapacitated in any way from this rare, ridiculous, inexplainable disorder. I want a normal life back, a life where I can do things: run and play with my kids, enjoy my time with Jim and help my parents as they grow older. I don't want people to have to fuss over me, look after me and worst of all take care of me if I can't take care of myself after all this. This isn't the way I pictured my life, nor is it anything I would wish on anyone else. I just want to get better, and I guess surgery is the only step forward to get better, so it's the only choice for me.
SM C1 to T8 15mm wide
Subarachnoid shunt 9/9/09 FAILED
Syringopleural shunt @T1-2 18/11/09.
Syrinx collapsed even more, revealing SUBARACHNOID CYST at T5/6
2nd syringopleural shunt planned for 11/2011
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Re: SM Shunt Information

Postby wendi » Tue Aug 18, 2009 1:24 pm

Michelle:

My heart goes out to you at this very difficult time.

I do hope that this is your 2nd or even 3rd opionion. Having spinal chord surgery is very risky. You want to make sure you are making the right choice in the surgery and NS performing it. I don't want to scare you, but at least he has been very up front at how it can turn out.

My prayers are with you.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: SM Shunt Information

Postby GRITS » Wed Aug 19, 2009 8:28 am

Rhonda,

On May 19, 2009 I had a syringopleual shunt and Laminectomy from T-12 to L-1. When I saw the pictures of you scars I couldn't believe my eyes. I have almost the same exact scars.
Before my surgery, I could barely walk even with a cane and was in constant pain.
One week after the surgery, I was able to walk almost normally and was painfree in my back. (I love my NS)
So far, I still am doing OK.
I wanted to ask a question. Do you have any burning/pain in your arms and hand? I do get some relief with
the Lyrica, but when I lay down at night nothing seems to help. As long as I stay vertical it's OK.
I hate to complain because otherwise I am a new person, able to anything I want. I really do need sleep sometime.

Thanks for all you do,
Debra (GRITS)
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Re: SM Shunt Information

Postby kalb » Sun Aug 23, 2009 2:25 am

My syrinx is in the C4 C5 area. Mine was called a syringo-subarachnoid shunt. After the surgery I woke with numbness from the left knee down to the foot. My left foot was burning horribly. It has now been 3 1/2 yrs. The numbness in the leg has mostly went away but I do have some in the foot. I also still get burning and have a lot of pain in the foot. It feels like I am walking on broken bones in my foot. My left leg does tire and aches more than my right now. Lyrica helps with the burning. This was all new following the surgery. Most recent MRI shows no change in size.

Until I started reading this I thought I was the only person that experienced foot pain after a shunt was placed in the cervical area. I have been considering getting the shunt removed to see if that would help relieve the pain in my foot. Now I wonder even more if it may be more of a permanent damage caused from the surgery itself.

Has anyone had a shunt removed for these reasons? As crazy as this may sound I have read of others that have wondered the same thing.
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Re: SM Shunt Information

Postby CamsmomKelly » Mon Aug 24, 2009 9:49 am

My son had syringo pleural shunt placed on 6/11/09. His right leg,hip,buttock was numb after surgery too he couldnt walk for 4 days , was in wheelchair , after therapy went hope with a walker, he can now walk unassisted but still has the "asleep" feeling on that side. While in hospital he also had extreme pain on the left side under his rib cage, it was off and on for about 2 weeks. ALL the sudden it has started back up he actually falls down and cries it hurts him so bad. Has anyone else had this? He has his first MRI tonight and IM hoping for good news and explanation as to why maybe this has started back up.
Thanks
Kelly
Kelly
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
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Re: SM Shunt Information

Postby kalb » Thu Aug 27, 2009 1:25 am

Hi there CamsmomKelly. I am sorry to hear your child is going through this. I hope we hear of better news from you in the near future. Do you mind telling me what area of the spine the shunt was placed? Thank you.
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Re: SM Shunt Information

Postby tattoodlb1 » Mon Sep 07, 2009 12:15 pm

bump
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: SM Shunt Information

Postby tnglitter » Sat Oct 17, 2009 1:08 pm

9 Months Post-Shunt For SM

It's been awhile so thought I'd post an update.

Still having the bladder and bowel problems, but getting used to the "new" way my body tells me I have to go. I try to keep track of my last bowel movement, so I won't be too far from a bathroom for the next one. I get NO WARNING for either bladder or bowel until I stand up from a sitting position. Then it's a race for the toilet. I still cannot "feel" when I am done and can't feel when I'm going, so I keep a phone and a book in the bathroom and plan for a stay. (Helpful Hint: I don't know if I've mentioned it before, but since I'm numb, flushable wipes are MUCH easier to use than toilet paper.)

I seem to have numbness from my waist down - it's the type of numbness I've heard described as surface numbness - I can still function - just can't feel very well. Also where my NS connected the drain from the shunt to my ribs, bothers me occasionally - feels like a foreign object there (which of course there is...). Also have the numbness and cold feeling at certain places above my waist - just here and there. My hands and fingers are difficult to control sometimes and I still get "the shakes", but not always.

I've given up on flip-flop type shoes. I'll walk right out of them and not even know. Sandals for me from now on will have to have an ankle or heel strap to keep them in place. I still have to watch the placement of my feet as I walk - with a cane or walker, depending on where I'm going to be. I have the walker with the built in seat - that's a MAJOR thing.

My right leg seems much number than my left, but both are very much affected. The numbness is something I attribute to the surgery itself as he had to cut in through the sub-arachnoid space and into the spinal cord to get to the syrinx. So it's a trade-off. I can still walk, by God!

I continue to have pain in my hips and upper thighs - the Sleep Comfort bed gives me the best night's sleep! I can adjust the softness of the bed so that the pressure isn't on my hips so much. I still sleep on my sides - my back still hurts like hell.

My ribs seem to be very sensitive as well - quite painful with or without touching them. And of course my shoulders. I think my shoulder pain could possibly be just stress on the muscles from the pain - not sure, but they do hurt a lot.

The post surgery MRI showed that the shunt was working, so that's good news. For those thinking of another shunt surgery, I know that scar tissue is a huge concern, so this needs to be discussed at length with your NS.

Basically I still have the same symptoms as I did prior to the surgery (the nerve damage was already done), with the addition of the weird numbness.

My NS wants to place a SCS (Spinal Cord Stimulator), in my spine - but the VA wants to do it with their NS's. I'm not having that. I want Dr. C to do it as HE knows my case thoroughly and knows where the shunt is, etc. I don't want the shunt messed up. Plus Dr. C has done thousands of SCS's as he's THE "go to guy" in a 4 or 5 state area around here. I'm at the end of the VA chain of command for approval of "out of system" surgery, so am now in contact with my Representative in Congress to start a Congressional Complaint and see if he can help me out.

Little Rock is where I'd have to go for the VA surgeons and it's several trips. That's a 4 hour drive one way for me - so it's even an over-night stay - for several visits. Fort Smith, where Dr. C is located is only about 45 minutes away and he has his own pain clinic right there. I can't take the time in the car (the VA said I could take their bus - OUCH!), and can't afford a motel room that many times down there.

I want to try the SCS so I can maybe get off some of these drugs I'm on. Particularly the Neurontin, which doesn't really even take the edge off the Neuro pain anyway. Also the Neurontin causes weight gain - which isn't good for my back either, right? I'd like to have something that actually works for my spinal pain instead.

I was told by Dr. C that the SCS sometimes will take care of ALL the pain, sometimes just some of the pain, sometimes most of the pain. It's hard to predict. But I want to at least have the opportunity to try it.

So that's where I am 9 months post-surgery. Hope this helps someone.

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: SM Shunt Information

Postby lady 59 » Sun Oct 18, 2009 1:04 am

H i Rhonda,, I just wanted to let you know that I "tried" the spinal cord stimulator. My pain clinic dr. is the one who tried to do it, it was a trial first & last. I had way too much scar tissue for it to go thru so that was it for me, and where he did get it in didn't do a thing for me anyway. I had a laminectomy done in 07( new dr. wants to do another surgery & place a shunt) and before that was diaginosed with foot drop. That's the part of not being able to walk without seeing where your feet are that I can relate to. Plus nothing stays on my feet, they are cold, numb, sore and I say all the time I trip over my own feet, literally!
So if you can have the SCS tried best of luck to you.
Sorry for rambling, it's kind of late as I'm posting this, can't sleep again due to pain!
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Re: SM Shunt Information

Postby tnglitter » Sun Oct 18, 2009 10:09 am

I'm so sorry to hear about your pain. We all know about that, huh? Had you had any spinal surgery other than your laminectomy? I wasn't aware that it could cause so much scar tissue damage. (Yet another reason for me to have the NS who put in my shunt do the SCS.) I had to have a laminectomy done as well - they routed the shunt out between T-10 & T-11 to drain between my ribs and right lung.

I guess a pain pump isn't an option for you either? I'm not sure how far they run those up the spine, but that was the other option I was considering. I just wanted to try the SCS first and try getting off some of the drugs I'm on. Not as familiar with the pain pump procedure, but I would think they could at least run that up as far as your scar tissue would let them - that would help some, wouldn't it? Have you discussed that with your NS yet?

**DON'T let anyone other than a specialist in SM do your shunt if you decide to get one!!!! Like I said above, my NS had done 300 shunts before mine and did his residency at TCI, was highly recommended by the members of this board and I even met with one of his patients before I ever saw him. BE CAUTIOUS - NS's who don't know what they're doing can REALLY screw up a shunt!

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: SM Shunt Information

Postby gail » Tue Nov 03, 2009 5:42 pm

Thank you for this tread. I have recently had several MRI that showed I had a syrinx from C 5 to T12. I see Dr Shah in Indiana University next Mon. I had a normal brain MRI. I didn't have a syrinx a year ago when I had an MRI. I have had neck and back surgery. Do they almost always want to do a shunt? How do they do that? I just don't know what to expect will happen next.
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Re: SM Shunt Information

Postby gail » Tue Nov 03, 2009 8:58 pm

When is a shunt called for, and when isn't it.
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