SM Shunt Information

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Re: SM Shunt Information

Postby tnglitter » Wed Nov 04, 2009 2:01 am

A good, experienced NS will do a shunt as a "last resort", waiting until your symptoms call for it. In my case I was beginning to have bladder and bowel issues - that's when he recommended the shunt surgery for me. The MRI's don't always show the size of the syrinx accurately, which is why they don't rely on those for a surgery decision.

Once the Neuro damage has been done by the syrinx, nothing will bring it back. For example, my syrinx "stole" my sense of balance. I cannot stand with my eyes closed and remain upright - I'll fall backwards every time. I rely on my vision to make up for the lack of the sense of balance.

The shunt will not cure your SM, only delay it's growth and provide a better quality of life for a longer time period. You will likely always have your syrinx. As long as the shunt is doing it's job, the syrinx can't grow anymore to damage more nerves. For us folks with a syrinx and no Chiari, this is the only treatment available right now for an active, aggressive syrinx.

Did that answer your question? It's the symptoms in each patient that determine the timing of the surgery, not the MRI.

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

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Re: SM Shunt Information

Postby gail » Wed Nov 04, 2009 1:29 pm

Thank you so much. Your answer pretty much answered me. I am having lots of electric like shooting pains everywhere. Headaches are much worse then the migraines then I have always had. I get these weird jumping things where my body jerks. If the NS waits then these will get worse, right? So why wait? Or is it because the surgery is so risky it could make things worse. I'm terrified of this thing and you are my only way of expressing it. Thanks for listening.
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Re: SM Shunt Information

Postby tnglitter » Wed Nov 04, 2009 7:55 pm

Gail,

What you are experiencing with your nerves "jumping" all around is a normal symptom of SM. I had it too. I spasmed out of bed one night even. And yes, I do still have the spasms - but they're not as bad as they were before the shunt surgery and I don't get them as often either. If the damage is done by the syrinx and it's total, you will still have those symptoms, but I think with me (particularly with the spasms), the damage wasn't total. The syrinx may have been pressing on some of those nerves and when the shunt was put in and began to drain, what the syrinx didn't do total and permanent damage to, I got back. (Make sense?)

Only you and your EXPERIENCED NS can make the decision if you are ready for surgery or not. A good NS will NOT perform the shunt until it's absolutely necessary. In my case, I was entering the realm of bodily function damage - next would have been the wheelchair. You need to look at the quality of your life. Of course you want the surgery now, before any more damage is done - but there are so many other considerations to take into account. Which is where your NS comes in. You must have complete confidence in them to help you make the right decision. PLEASE, if nothing else - get a name from this board of a NS with experience with Chiari and SM. (Just start a new thread asking for the name of a NS in your area - Roz keeps a list of the good ones.) My NS had over 300 shunts under his belt when he did mine......

Sometimes a syrinx is not "fat" enough for a shunt, so that does matter when considering shunting a syrinx. There are other medical factors that come into play when making that decision as well.

The biggest decision YOU have to make is to weigh the benefits -vs- the possible outcomes. Shunting a syrinx is an extreme surgery and is only done as a last resort for the quality of life of the patient. The syrinx is located INSIDE the spinal cord central canal. Think about that a minute. In order to shunt that syrinx, a NS has to get through the intricate nerve webbing of the Arachnoid space, then actually make a cut INTO the spinal cord itself to get to the center of the cord and get to the syrinx. That's a whole lot of "ifs" to overcome. All along the way, there are massive numbers of spinal nerves and some WILL be damaged permanently. It cannot be helped - it's invasive surgery.

In my case, I am practically numb from the waist down to my toes. The surgery itself caused life style changes. I walk out of shoes that aren't securely attached to my feet and don't even know it - no more flip-flops, etc. I can't tell until THE last possible minute when I'll have to use the bathroom. I'll stand up and badda-bing - my body tells me that I'd better be near a restroom. This is the same for both my bladder and bowels. I have to keep track of my bowel movements so I can estimate when I'll need another one and have to make plans to be very near a restroom during that time frame. It's very limiting. And I disappear for as much as an hour for those BM trips. I can't feel when I am going and I don't know when I'm done. Instead of toilet paper, I use flushable wipes as I can't feel where I'm trying to clean myself.

I'm not trying to be graphic with you to shock you, I just want to be totally honest with you and give you the facts. I will never sugar-coat anything important on this board. I'm straight up and I'm 100% honest here - most of the people on the board can attest to that. I'm not trying to talk you out of having the shunt surgery, I'm just saying it's not something to hurry into. You have to do a LOT of thinking about such an important decision. Also, since I'm "numb" from the waist down, I don't know yet what affect that will have on my (self-admitted nonexistent) sex life. So this is a conversation that you need to have with your significant other as well. There are SO many factors to be considered.

Your very first step is to find an experienced NS in an area near you - so you need to make that post asking Roz about that. DO NOT LET ANYONE CUT INTO YOUR SPINAL CORD WHO DOES NOT KNOW WHAT THEY'RE DOING!!!!! Like I said, my NS had done over 300 shunts before mine. That should be your guideline.

One final thought to leave you with. There are many on this board who have chosen to NOT have the shunt surgery done, for their own reasons. So this is not something for everyone with SM. You have to make your own personal decision about this - WITH an experienced NS! Hope all this helps you out. Let me know if I can answer any other questions for you.

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

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Re: SM Shunt Information

Postby gail » Wed Nov 04, 2009 9:30 pm

Thank you so much for being blunt with me. I have Crohn's so not knowing when I have to go would really be mess. I am so sorry you are going through that. Did that happened to you because of the syrinx, or because of the shunt? At first my Dr. could not find a NS. Then my brother in law who is in Indianapolis and is a gastric Dr. recommended Dr. Shah. I think he is in charge of neurosurgery at Indiana university. I wish the appointment Mon. was behind me so I knew what he was thinking. I for sure will ask how many patients he has had with SM and how many shunts he has done. I will also ask like you said on another thread. My son had a brain tumor when he was 18 so I was surprised when his Dr. refused to see me. But I am getting the picture why- now. It seems really scary to have a shunt, and really scary not to. If I wait then I get worse and it is irreparable, and if I have it I could be damaged from the surgery. Wow
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Re: SM Shunt Information

Postby tnglitter » Wed Nov 04, 2009 11:32 pm

Gail,

Yes, that is what I meant by a "last resort surgery". The surgery itself is almost guaranteed to leave life-altering complications behind - it just makes sense because of where the syrinx is located. You have to weigh the benefits -vs- the complications very carefully and most NS's won't do a shunt until they absolutely HAVE to, because of that.

My numbness from the waist down is a result of the surgery itself. I did not have that before the surgery. It's kind of a weird feeling. It's like your leg when it falls asleep and then you try to walk on it. You can control your muscles, but have numbness and severe loss of sensation. I have to watch my feet when I walk to make sure I took a step and won't fall when the other foot comes up for its step. It's worse in my right leg and foot than in the left. I use a cane or walker depending on where I'm heading - whichever is easier for the venue.

When all is said and done, I personally would elect to have the surgery again - knowing how things turned out. I consider my surgery for the shunt implant to be a success, even considering the side effects of the surgery itself.

But it is a personal decision that everyone has to make for themselves with their NS's input. Some elect to have it done and others decide it's not for them - for whatever reason. Not an easy decision, but a necessary one and one that deserves a whole lot of thought and input from not only your surgeon, but really your entire family.

Your very best ally in all this is knowledge. TCI's website www.thechiariinstitute.com has some really great videos that are extremely easy to understand. They don't have ALL the answers, but will give you a really good beginning knowledge to know what you need to ask for more information and enough information to "vet" your NS.

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

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Re: SM Shunt Information

Postby gail » Wed Nov 04, 2009 11:46 pm

Thank you again. I am kind of surprised you would do it again.
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Re: SM Shunt Information

Postby lttutrow » Wed Nov 04, 2009 11:59 pm

Gail,
I would encourage you to get a CD of your brain and spine MRI and have Dr. Shah show you where he's talking about as he's talking. I know idiopathic SM does happen, but I also know all too well that a Chiari Malformation really should be evaluated as there or not there by the Neurosurgeon themselves and not just determined by the dictation done by the radiologist. For whatever reason, radiologists and neurologists seem to miss it a lot of the time.
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Re: SM Shunt Information

Postby gail » Thu Nov 05, 2009 1:10 pm

Thank you. I have the film. I had a MRI of the brain with out dye. Is that good. They first did a MRI of the c spine with out dye because I complained of these horrific headaches. The radiologist recommended C spine with dye after seeing a syrinx. Also a T spine MRI. The C spine with dye didn't show it as much as with out. But then when I went for the T spine with out and was almost finished with the scan the tech said the radiologist wanted to have me get dye right then, because she saw something. That showed that it went from C5 to T 12. I then asked my Dr. for a brain scan since I have to travel 3 hours for the NS. He agreed and ordered it. It showed everything normal. Like you said to the radiologist's eyes. Was that the correct kind of brain scan. Now I am wondering if the L spine shouldn't be done too. Thanks
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Re: SM Shunt Information

Postby tnglitter » Thu Nov 05, 2009 11:59 pm

Very good point about the MRI's. Yes, you should have an entire set of MRI's done and evaluated by the NS you see - as long as the NS is a good one for CM/SM. There are still many NS's out there that don't catch a Chiari malformation as they aren't up to date in the latest techniques to review and diagnosis them.

An MRI "report" from the Radiologist is okey, but there are so many NS's out there who aren't up to date, can you imagine the number of Radiologists who will mis-read or miss a CM? It IS quite unusual - but not impossible to have an idiopathic (HATE that term) SM. Many, many of us here on this board have SM with no CM. You DO need to have Chiari ruled out by someone who knows what they're looking at though.

Which is why I advised you above to: #1 - get to a NS who DOES CM/SM.

You should always have in your possession, a CD copy of your latest MRI's - brain, cervical, thoracic and lumbar. With and/or without contrast - really doesn't matter. If an expert NS is looking at them, and needs a closer look, they'll order another one with contrast. Your NS will want to keep your CD of MRI's. Fine - they can make a copy to keep. Don't leave without your copy!

Starting a daily diary of what hurts, what the pain is like (shooting, burning, etc.), and what you did the day before will help the NS out immensely as well. Just be sure not to over-do.

And yes, I would have the surgery again. Had I not had the surgery when I did, I know that I would be sporting a bag or two for elimination and most likely a wheelchair as well. My syrinx suddenly "woke up" and wreaked havoc with my body. This is not the usual progression, although there are some of us who suffer SM in this way and this quickly. Everyone is different. But given the same set of circumstances and the same surgeon I had, I would DEFINITELY do it all over again - no question.

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 » Fri Nov 06, 2009 2:28 am

Thank you once again.
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Re: SM Shunt Information

Postby phyrehawke » Sat Nov 07, 2009 8:36 am

I also want to thank you for your incredible honesty Rhonda.
I had a mild bump to the head a few weeks ago that has my cervical syrinx all kinds of upset, cape pain, etc. I think Dante missed a level of hell. But I have healed my syrinx partially before, maybe I can pull it off again?

We are starting to talk about another MRI and the shunt subject came up again, although I'm a bad candidate for a shunt. So it was really good for me to read your story Rhonda. I want an answer to the problem, but shunts come with problems of their own. The benefits must outweigh the risks.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: SM Shunt Information

Postby tnglitter » Sat Nov 07, 2009 9:44 am

I started out this thread with the intention of providing the type of information I couldn't find anywhere when I was awaiting my shunt surgery. Roz had put me in touch with a former shunt surgery patient of Dr. C's from Kansas, whom I actually got to meet when she came down here to Fayetteville for a dog show. With her story, I was able to better face the upcoming surgery with fewer doubts but I still did not have the "whole picture". By allowing others to go through this procedure with me, I hope I have provided helpful information for patients with SM and information about treatment options, with honest and open dialogue and practical matters that don't seem to be addressed anywhere else. As the healing process occurs, one tends to forget about the little things that become major obstacles along the way - thus the diary updates for you.

I'm not finished with my journey, as I'm still attempting to get the SCS installed by Dr. C. Since that requires approval of the VA and the VA turned me down (they want to do the surgery themselves!), I am now awaiting a decision from my Representative in Congress, who can over ride the VA's decision - or not.

Although I know this is not a political forum, I feel I must point out that what I receive for heathcare falls under a government run system. I have no choice in which doctors I see and must fight every step of the way to get to a doctor of my choice and get the treatment of my choice or any treatment at all, (although we all currently face that obstacle since the diagnosis of SM/CM is so wishy-washy within the medical community). Just sayin' .........

If I've helped just one person make a decision or make it easier to go through with the procedure, knowing what is down the road, I have achieved my goal with this thread. Please remember that this is only ONE person's experience with shunt placement, others may have different results and different experiences along the way. But I am more than happy to help or answer particular questions anyone may have. Reading that I have helped makes it all worthwhile sitting at this computer for longer than I should..... :)

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 Dcuster » Mon Nov 09, 2009 2:22 am

Rhonda, I just tried that link one more time for the Video's with TCI, FYI they don't work anymore, I guess they took them down or something. I am so sad about that I watched those over and over learned something new everytime I watched them now they are gone :(
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Re: SM Shunt Information

Postby tnglitter » Sun Nov 15, 2009 10:23 am

I just tried the Chiari Institute web site and they must be updating their videos. It will be interesting to see how or if some of the information is changed.... Keep checking. :)

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 Chiariblogger » Sat Nov 28, 2009 6:49 pm

Hi

I have a blog in the UK and am looking for guest posts by people who have had elements of surgery that I have not personally gone through.

The placement of a shunt is one of those topics.

If anyone who has had direct experience of this would like to offer a post about it I would be grateful.

Thank you very nmuch indeed.

TC

Chris

http://www.chiariblog.co.uk
ACM (17mm herniation) SM C1 to C3. Decmpression Surgery April 2009. http://www.chiariblog.co.uk
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