Shunt placement 9 days ago

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Shunt placement 9 days ago

Postby Eden** » Thu Sep 17, 2009 2:08 pm

Hello all, I just had a shunt placed last week and I suppose I should write about it in the "sucess stories" because it didnt
paralyze me, however, my left foot,leg,butt and um womanhood have been asleep since I woke from surgery and the pain in my back is still pretty intense.
I have had a difficult time walking because of my leg feeling asleep I feel like I have golf balls on the bottom of my foot its weird. Doctor says it may go away it may not and that it will all just take time. Perhaps years.
Over all though the actual surgery was a success he said he literally watched my spinal cord shrink when he drained it, he gave me pics too of the shunt in there its pretty wild to see it if I could figure out how to post them on here I would but I dont know how to do much of anything on this site.
Anyway just thought I would share my somewhat success story if anyone else has experienced this asleep feeling please tell me about it like wether it went away or what not, I could really use some hope.
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Shunt placement 9 days ago

Postby Janice » Fri Sep 18, 2009 11:57 am

Hi Eden,

The link below has a lot of valuable tips for manuevering through the site and info on posting pics.

viewtopic.php?f=2&t=3226

I'd love to see what an inserted shunt looks like.

Also, to find posts on shunts, type variations of the word "shunt, shunting, shunts, etc.", in the search box and you should get quite a few posts.

There's on specific posts where the member was detailed about her recovery period that extended over many weeks/months. You should find this post very helpful and can find it under the member "hickchips".

Take care and I wish you continued healing and progress during your recovery.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Re: Shunt placement 9 days ago

Postby Eden** » Fri Sep 18, 2009 1:16 pm

Image

Image

Image


Thanks so much for the info I really hope this worked I couldnt figure out how to resize it to the proper size
If you look close in one picture you can clearly see the fluid inside the cord and in the other its empty.
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Shunt placement 9 days ago

Postby Janice » Fri Sep 18, 2009 4:33 pm

Interesting pics, thanks for sharing. If you check on the other forums, a member named Michele is recovering from recent shunt surgery also. Maybe you could send her a private message "PM", from the user control panel and the two of you could communicate regularly regarding your recovery, issues, concerns, etc. It's just a thought.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
Posts: 4412
Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Re: Shunt placement 9 days ago

Postby MichelleW » Fri Sep 18, 2009 6:00 pm

I had my shunt placed on Sept 9 and I too lost feeling in my right leg, groin and all womenly parts too...

Here's a link to my story that I posted in the lounge earlier:

Last Wednesday (Sept 9) I underwent surgery for what was supposed to be a laminectomy of C2-3, removal of a tumor at C3 and placement of a shunt to drain the SM that ran from C1 to T8. After being put to sleep for the surgery, there was apparently some communication between my Dr (the head of neurosurgery), his 2 resident drs he had helping, the anesthesiologists and radiologist that was in the room. Since the tumor that was seen on my second MRI at the c3 level was so small, and since my dr wasn't completely convinced of where the tumor was, they decided to sent me for an MRI. So, from the OR room, i was wheeled back to the MRI area and they performed a very in depth detailed MRI with contrast of that area which showed nothing, no tumor, no nothing. It was determined that the first MRI that showed the highlighted spot was likely a glitch in the mri picture.

That made this surgery much simpler. The neurosurgeon could go in and do the laminectomy much lower at T1-2-3 and could place the shunt in the widest part of the syrinx (which was 13.4mm wide!) The surgery went textbook, and in less than 6 hours from the time i was knocked out for surgery, i was back in the observation room where i stayed for 4 days. Day one after surgery was ok, I had a morphine pump and could give myself 1.5mg of morphine every 8 minutes. I slept most of the time but was thrilled that i could feel all my extremities just fine. However, on day two, I lost all feeling in my right leg, bum and groin. That freaked me out bad and I spent almost 3 days crying. I had to give up the morphine pump on day two and was living on tylenol 3 and the odd injection of morphine every 4-6 hours. The pain was excruciating - I won't like, I cried a lot wishing I hadn't had the surgery at all.

Day 3 and 4 and 5 were the very worst. They wanted me to sit up and eat meals at the side of the bed and I just couldn't. The pain from the incision (about 6 inches long) and the muscle spams in my shoulder blades and arms were unbearable. They got me up walking on day 3, and I made it about 10 steps, feeling totally like a newborn learning how to walk all over again. I couldn't feel my right leg whatsoever, so walking was impossible. I had good strength, just had no idea where my leg was when I was walking.

Day 6 was a little better. I walked a few steps down the hall way with assistance, started using the commode since they had taken out my catheter. They decided I was healthy enough to transfer back to the hospital in Moose Jaw, my home town so I could start physio here closer to my family... but there were no beds available in Moose Jaw so I had to wait until Tuesday.

Tuesday, I came home with my husband in our van instead of in an ambulance because I thought it would be better, and the 2 hour ride went very well. I was admitted to the hospital here and started physio that afternoon. I did some walking with the physio attendant and between my Dr and the specialist in Saskatoon they came up with a good combination of medication that seems to make a huge difference in my pain. I am now on Toradol 5mg/Valium 10mg and 10mg morphine/500mg tylenol, alternating the two combination every 4 hours. It has totally gotten the muscle spasms under control and I am walking almost normally again. Wednesday I was taken to the physio dept and climbed stairs, got in and out of a bathtub and they decided I really do not need physio at all right now. So, Thursday morning I was released home. I AM HOME!! :)

I am very glad to be here, where I can relax, do a little and enjoy my healing time with my kids and hubby close by. I'm honestly not in that much pain and I am starting to get the feeling back in my right leg. I think the swelling in the spinal cord is starting to relax which is what is helping in getting the feelings back.

I am certainly on the road to recovery now. I see the neurosurgeon again in 6-8 weeks for a follow up appointment and then in 3 months I will have to have a follow up MRI to see if the entire syrinx has decompressed. I am anxious to know if it worked or not...but I know this isn't something I ever want to do again.

Thanks to everyone for their amazing support on here - good things can happen from shunt surgery - I just hope this all stays good and i never have to face having this done again.
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Shunt placement 9 days ago

Postby Eden** » Sun Sep 20, 2009 11:06 am

Thank you so much for your story it gives me some hope. I too cried ALOT I was completely devastated and wishing that I wouldnt have done the surgery, I have not lost complete feeling but its all asleep and "abnormal sensations" so everything that I do feel is not a real sensation like sometimes I feel like my leg and butt are wet and there is pins and needles all the time, it feels like sandpaper when I wipe myself its horrible. My surgery experience was also hell morphine didnt work when I first woke they gave me three doses through the iv then a straight shot into my thigh muscle, still no relief so I was put on diladen that seemed to work better just knocked me out, I was mostly on percocet and soma. They did my laminectomy from T-7 to T-10 My doc said that was a good spot because it was above the area that controls bladder and bowel functions and below the area that controls the arms but I also get alot of muscle spasms by my insicion especially when I use my arms alot. My pain is under control now for the most part but this ordeal was definately ALOT more painful then I ever imagined. I really hope I never have to go through this again.
Thanks again for all the support here I really appreciate it and I will be sure to update on the asleep feeling. God bless!
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Shunt placement 9 days ago

Postby MichelleW » Sat Oct 03, 2009 4:09 pm

Well, 3 and a half weeks post-op and I feel like crud. Not sure if it's the flu, or something else going on.

I was doing good. On Wednesday last week I was actually feeling really good. I had gotten most of the feeling back in my leg, except my foot and as for the groin, it was ok, not back to normal but lets just say the bodily functions were working almost normally. I had stopped taking the toradol/valium combination as it made me so incredibly tired that i could not function. I had less than 5 minutes after taking it, and I was out cold, sound asleep for hours. If I took it at bedtime, I would even sleep through the alarm going off 8 hours later. I had also weaned myself off the morphine and was taking tylenol for the pain instead. I was back to driving a little, the kids to school and home again (6 blocks) and was able to wash a few dishes and fold one load of laundry between time outs of relaxing on my back. I was feeling positive that i had this recovery beat. I think I was too cocky, and pushed myself too hard too fast.

Come Thursday morning I realized that I was losing more and more feeling again. I called my Dr and he prescribed naproxen as an antiinflamatory and told me to take robaxacet for the muscle spasms and carry on with more tylenol if I needed it. But told me to finish the toradol first, without the valium, before i started on the naproxen. If the feelings hadnt started returning in 2-3 days, he told me to call the neurosurgeons office for a phone consult. So, I am back on the toradol and have 3 more days before i start the naproxen. The feeling on Thursday night was so non-existent that I had no idea when I needed to go to the bathroom. Combine that with coming off the morphine (which constipates you) and surely you can gather what that night brought, a..lot.. of... *sigh*

This isn't any fun.

But, today I can say that I do have some feeling coming back in my leg and bum, but the groin is still all tingly (and not in a good way unfortunately).The only way I can describe the loss of sensation is that `I can feel myself touching my leg, but i cant feel anyone else touching me. But it does feel like I do have sensation about a quarter inch under the skin`. It is by far the most strange feeling I have ever had to explain.

My back is killing me though, but not in the muscles, in the actual spine area of surgery - which I am assuming is because I was off the morphine and finally feeling that pain. Needless to say, I took morphine again this afternoon and the pain is subsiding now that I also have an icepack on. I wanna go back to work, I wanna be able to do house chores and play with my kids. But, I need to get better. And I guess that means I do nothing.

I`ll keep you all updated. I see the neurosurgeon on Nov 3rd for a followup unless i have to go in sooner.
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Shunt placement 9 days ago

Postby MichelleW » Tue Oct 06, 2009 4:09 pm

well... Eden
I sure hope your surgery turns out better than mine!

I called the neurosurgeon Monday morning. He called me back and told me to get straight to the emerg room of the hosp in Saskatoon.

We got home from Saskatoon at 2am. After 10 hours in emergency, the MRI and xrays showed that everything from the laminectomy and shunt placement is healing nicely and the pain is my spine is normal-the swelling has eased so I have little need for anti-inflamatories.

But the bad news is that the surgery has failed to do what it was meant to, which is drain the syrinx, which likely explains the numbness. The syrinx has not completely drained, in fact the resident Dr said it's drained very little, so I have to meet with the neurosurgeon again on Oct 22 to 'discuss our options'.

Sounds like the post-op numbness is actually a shift in the syrinx fluid putting pressure on new nerves and will be here until the syrinx IS drained. And believe me, I am NEVER doing another shunt placement!

Ugh
I hate this.
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Shunt placement 9 days ago

Postby MichelleW » Sat Oct 10, 2009 12:51 pm

Any updates from your appt Eden?
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Shunt placement 9 days ago

Postby MichelleW » Fri Oct 23, 2009 10:12 pm

My surgery has completely failed. I need a syringoplerual shunt placed ASAP.

I hope your followup went better Eden!
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Shunt placement 9 days ago

Postby Eden** » Tue Nov 10, 2009 11:13 pm

Hello sorry I have not been on here for awhile I started back at work and its been pretty hectic.
So as far as updates go I have regained alot of feeling (Thank God) it still does not feel entirely normal but I can feel more than I could definately. My appointments went very good my doc said that he is very surprised at how quick I am getting feeling back and that it should continue to get better but may not ever be completely normal.

He still has not asked for another mri he said he usually waits a year after the surgery for that, and to expect there to be fluid, that the shunt will not drain it all it is just meant to keep the pressure down so that my cord is not stretched I think I have a different shunt than you (michelle) though I have a sub-arachnoid shunt I don't know what a syringo pleural?? shunt is.

Michelle I am so sorry to hear about your surgery. So is it another surgery they are planning to do now? Has any of your symptoms improved the symptoms from before the surgery or the ones from after? I feel pretty confident that my shunt is doing what it was meant to because I still have not had a flare-up of nerve pain and my headaches are not near as frequent but I am still nervous to get the mri. I would be devastated if he said it wasn't working so I can only imagine how scared you must be. I really feel for you, our surgeries seem to be very similar and I know how scary and painful it was, I really hope you don't need another one, my heart goes out to you
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Shunt placement 9 days ago

Postby MichelleW » Wed Nov 11, 2009 2:16 pm

I had the subarachnoid shunt done on Sept 9. It has failed.
I am having the syringopleural shunt placed on Nov 18. It will drain into the lung space instead of into the subarachnoid space. My lungs will have to learn how to deal with the fluid, and hopefully my body will be able to process that fluid out.

As far as symptoms go, I am much worse than pre-op. The post-op problems are that I still suffer with little to no feeling in my right leg, which depends totally on what I do in a day. The more walking I do, the less sensation I have. I have also lost all feeling in the groin area and my bladder and bowels are acting up. I have an overactive bladder and no muscle control to have a bowel movement. Unless I have diarrhea, I have to strain to go, which I know is not good for me, but it's all I can do to go. Thankfully, most of the time I have diarrhea. *sigh* I also have much more intense muscle spasms in my chest area, and shocking feelings running down my legs almost all the time.

As for the pre-op symptoms, I still get headaches, just not as bad. I have tremors in my arms still and pain in my left leg and hip. These symptoms were all gone right after surgery, but over two weeks they returned. I guess the syrinx filled back up after it drained slightly during surgery.

I really am scared about the outcome of this next surgery. I dont want to lose any more neurologically, but I know I stand to lose a LOT if I don't have this done, soon. Thankfully, I know what to expect, sort of. I know the hospital routine, I know the surgery routine, I know what to expect post-op as far as pain management and I know the staff I will be seeing. That helps. The unknowns that scared me so much last time, this time I know. I am scared though of the intense pain from having a second and possibly third incision, over my shoulder blade and through my ribs. I am scared to death that my lungs will not work well after this and that I will continue to live my life in pain from this. But at least I will be alive, and God-willing, I will be mobile to love and take care of my family after this.

I am so glad to hear you are doing better Eden. I hope that means that eventually I will be on the mend when a shunt gets placed that does work.
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
MichelleW
 
Posts: 185
Joined: Thu Jun 18, 2009 12:09 am
Location: Moose Jaw, SK, Canada

Re: Shunt placement 9 days ago

Postby Eden** » Sat Nov 14, 2009 2:18 am

Michelle,
You are definately in my prayers I am so sorry things turned out the way they did. I hate that you have to go through another surgery.
I am glad to hear that there is another option for you though and its not just your ** out of luck. If the doc thinks this is what needs to be done then that gives some hope. Try to think positive about it, I had a really good feeling about my surgery and was very calm going into the operating room, just believe that it is going to work and things will be a little easier.
I know that its not easy at all I'm not trying to say that it is, this is a very hard thing to deal with I can't imagine how you must feel. So I will be positive for you and pray for you. It seriously brought tears to my eyes to read your last post my heart aches for you and I hope you have alot of support for this.
Keep us all posted on how you are doing.
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

Re: Shunt placement 9 days ago

Postby sherin1005 » Thu Dec 10, 2009 3:45 pm

Thanks for the stories...I am scheduled to have surgery on Dec 28, 2009. A shunt placement and syrinx drained. I AM SO SCARED!!!!!
I fear everything I have read from your stories. Loss of feeling in my legs all of it and the PAIN Oh my god...
sherin1005
 
Posts: 3
Joined: Thu Dec 10, 2009 3:26 pm

Re: Shunt placement 9 days ago

Postby Eden** » Mon Jan 04, 2010 9:32 pm

sherin1005 I havent been on this site in a while but I just read your post about having a shunt placed, How are you doing? I hope everything went good, I'm sure we scared the hell out of you with the posts we left, sorry about that but I am definately for getting the shunt. I did lose some sensation and also gained very abnormal sensations but over all I am better than I was before the shunt, well symptom wise , I go in for my mri in march then I will really know if things are good. But I would love to hear your story when you are up for it. Hope all is well
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
Posts: 42
Joined: Thu Jun 25, 2009 4:47 pm

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