Syringosubarachnoid Shunt Placement

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Syringosubarachnoid Shunt Placement

Postby akbrowneyes » Mon May 28, 2007 11:11 am

Has anyone had this surgery? Any insight?
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Joined: Fri May 25, 2007 7:27 pm
Location: Anchorage, Alaska

Postby kiminfla » Mon May 28, 2007 1:09 pm

I don't have any info on this surgery but I did post a reply in the Lounge under your School's Out thread with an idea about possibly being able to contact Dr. E's other patients who have had the surgery. 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 MsRiddle » Mon May 28, 2007 7:51 pm

Brown Eyes~

I have never had this surgery and am not a medical professional. I do encourage you to research this procedure very well before agreeing to it. I know that a lot depends on what your specific condition is and if you are seeing Dr. E. I encourage you to have faith and trust that you are being treated by one of the top professionals in this field.

It is also my understanding that the biggest research topic at NIND's has been ongoing to try to find an alternative to the shunt. You may be in a position where you can't wait, but if you have time, you may want to ask the doctor is there may be an alternative therapy that is non-invasive to the spinal cord. Also, you may want to make sure that you get the shunt that can be reset non-invasively.
~No longer what I used to be - Not yet what I'm going to be.~
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Postby kalb15 » Tue May 29, 2007 9:27 am

My outcome was not so great. Definitely ask a lot of questions before you decide to go ahead with the surgery. DO your research.

What is the cause of your syrinx? How big is it? What are your symptoms and how bad are they? These questions will all make a huge difference in the decision you make. There have been those with an outcome worse off or no better than before the surgery was performed. However, there are those who had no other choice and did have success with the surgery. Success means many different things.

There were many questions like this found here before they made changes to the site. Does anyone know if there is anyway to retrieve those?
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Postby Tidbit » Tue May 29, 2007 3:01 pm

I had this surgery in September of last year. I was told repeatedly by my NS and by Dr. Tator in Toronto that the shunt would NOT make me better, that nothing will ever make me better than how I felt going into the surgery, but that it SHOULD stop me from getting any worse/progressing.

I woke up from the surgery with no feeling in my right leg, which was terrifying. I still had a full range of motion and full strength, but it was completely numb and when I walked I couldn't perceive where my leg was or if my knee was even bending. Throughout my stay in hospital, the feeling slowly started to come back and by the time I was discharged I could sense the placement of my leg and the knee bending.

However, to this day I still have numbness. My right foot constantly feels numb, like how your cheeks feel after you've come from the dentist, and I can't sense the bending of my 3 middle toes. My leg from the knee down just feels really funny, almost like there's a layer of feeling missing between the surface of my skin and my bone deep inside. It almost feels as if I have a compression stocking on my lower leg but I don't. From my knee up is normal again, which is good.

It is very important that I stress that the strength and functioning of my leg has NOT been decreased at all, that it is only a sensory thing. For example, I am able to walk my dog every day, go to the gym 4 times a week for 45 minutes of non-impact cardio, etc. It just feels funny, that's all.

Unfortunately, I did have some worsening and new pain after the surgery, which I was told would not happen. Again, none of my strength and functioning was affected, I just had more pain. I contacted Dr. B. at TCI and he said it sounds like I have "dysesthetic pain" which he says is quite common after a syrinx shrinks (my followup MRI in December did show significant shrinkage of the syrinx cavity). I had no warning that this might happen.

My pain is now very well managed, and the addition of amitriptyline to my treatment has meant stopping several of my medications. I feel better and more "normal" than I have since being diagnosed.

Would I have this surgery again? Probably, the main reason being because they lifted my lifting restrictions because of the shunt being in and being functional. I'm used to the numb feeling, my pain is well managed, and I'm leading basically a normal life (minus working, but I hope to be back part time come fall). But that's just me. Others may find the numbness in the foot and the dysesthetic pain too undesirable when it's not a 100% guarantee that progression will halt...the jury's still out on whether or not it will have stopped any progression in me, and only time will tell.

Just be forewarned that dysesthetic pain is common after a syrinx shrinks, since I wasn't. Also, as my NS stressed, they ARE cutting the spinal cord so some degree of sensory deprivation is a strong possibility and to be expected. The less tissue they have to cut through (ie the bigger the syrinx, the thinner the cord) the better, since fewer fibres will be cut. It's a personal decision whether or not this risk is worth it. For me, I was progressing, so it was worth it.

Hope this helps.
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