Syrinx entire length of spine

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Re: Syrinx entire length of spine

Postby andij » Sat Mar 24, 2012 8:59 am

Hi Catrine

Glad to hear that overall your shunt surgery went well and that the syrinx collapsed and you have some funcion back in your arm. Hopefully your syrinx is communicating and it will stay collapsed now with the shunt draining it and it wont return.
I had surgery for a shunt (I think it is a subarachnoid shunt) into my syrinx on Thurs and am currently on 48hrs flat bed rest in hospital. (I have CM, SM have had 2 CM decompressions and several VP shunt surgeries). My syrinx is also segmented. The part of the srinx where they went in t1 t2 did drain during surgery but i'm told i will have to wait a few weeks before they will know the true outcome of the surgery and whether the segmented syrinx is communicating. I also have a arachnoid cyst which we are hoping the shunt will drain. I am currently in A LOT of pain in my back with the slightest of movements being agony (despite being on a high dosage of pain relief). I am having pain in my chest area and have weekness, numbness and pins and needles in my feet/legs. (But at least I can still move my arms and legs, which was something i was worried about pre surgery!) I am not having headches yet but have been told to expect this when I start to sit up. I know we are all different but can anyone else who has had simiar surgery tell me what to expect in terms of pain and recovery over the next few weeks? It currently feels like it will be a long road, especially with my legs not working properly. Thanks for letting me share. It is very comforting to know there are people out there who understand what I am going through. I have been told that if this surgery is not successful and the shunt does not drain the syrinx and the cyst, then there is nothing more they can do for me!!! So I just have to hope it works.
Thanks
Andij
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Re: Syrinx entire length of spine

Postby Catrine » Fri May 11, 2012 2:40 pm

Hello all,

I've just finished week 7 of 8 in rehab (cue any Lindsay Lohan jokes you'd like :lol: ).

What I am starting to understand is that there will be good days and bad days with my SM. I guess I was hoping to go back to "normal" but this is my new normal. There has been some slight improvement in my arm strength but it is a very slow process. Pain levels vary by day. Swallowing and cognitive problems have improved. 30% of rehab has been helpul but I've been stuck in a general neuro rehab unit and the majority of the patients are 80-year old stroke victims. Funny thing is that some of them are making better progress than me. Intellectually I know these are different conditions but it is hard to be faced with people around you getting better when you are not. I will be off to a spinal injuries unit in a couple months for a shorter, but hopefully more targeted, rehab stint.

Physio has been somewhat helpful but, again, it will take time and there is no guarantee that the nerve damage will repair.

The question I'm now asking is how much more effort does a person put in to "get better" when you aren't sure that will happen? I'm not the giving up type but there are days I think my limited enery levels could be better spent.

Don't want this post to be a downer - more to encourage people to get their SM addressed sooner rather than later.

Will keep you troops updated as my story continues.
Hope yo are all keeping well
C
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Re: Syrinx entire length of spine

Postby Catrine » Wed Jun 20, 2012 5:34 am

Hi there,

Wanted to further update you on my journey. In about a week I will be entering a spinal injuries unit for a further 3 weeks of rehab. Some physio, some occupational therapy, etc. At least I will be around more people who understand spinal cord injuries. Hopefully I'll get some guidance on proper wheelchairs, how/if I can go back to work, pain management, etc.

In terms of my SM, not sure how much help the syrinopleural shunt has been. Have an appointment to see my surgeon in September and I should have an MRI before that to see if the syrinx has refilled again. I've read 50% of these shunts block within 1-3 years.

Just taking one day at a time now...feel quite uncertain about the future. Hard to make plans when I don't know how much more medical intervention I will require or how much more I want. If this shunt blocks I will be heading toward my 25th op. At some point I'd like my life to be about more than just my medical condition.

Want to re-iterate my advice to all SM people out there. Earlier is better in terms of treatment. Find a good surgeon, get the right tests done and most of all, watch your physical symptoms. You will be the best judge of whether you are deteriorating.

Will check in again in August.
All the best
C
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Re: Syrinx entire length of spine

Postby reedy » Thu Jun 21, 2012 2:40 pm

Hi Catrine,

Its good that you'll get some time in a specialised rehab unit. Your comments are useful for others, though I wish all this had been easier for you.

I've been referred to PT, pain management and uro-neurology - and after several weeks of waiting, got letters letting me know that none of them can even schedule me for at least a couple of months. I guess I'll have to invent my own system. However, after reading your description of the rehab, I guess I feel I'm not missing that much.

Give me a hollar if you want to meet up for coffee some time.

reedy
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Re: Syrinx entire length of spine

Postby tattoodlb1 » Sat Jun 30, 2012 6:58 pm

Hi,
Thank you for sharing everything. I know I'm deteriorating because I sleep almost constantly and now mostly without meds. I always wake up yelling in pain due to some body part or other. I have just about stopped sweating all together. Numbness and tingling in my face, feet and legs. so yeah, typical day, wake up whenever I wake up, meds, nap, wake up 3 hours later, computer stuff, do what I can around the house which isn't much! Then bed again between 7:30 pm and 12:30 am. BF has his own quirks but he knows my condition and handles it quite well.

As far as feeling left behind by the "youngsters" there, we all just heal at our own rate ....... and the quality time and effort you put into it will give you better results. But you can also get to your bodies' cap. We can only push so much. don't be disappointed if you're not "healing" fast, just do what you can, listen to your body and hell, that's alot of surgery and sometimes recovery from one takes longer and we don't know it and then we're having another surgery. Be gentle with yourself.... set goals but make them small and as they are accomplished, set higher goals.
You're a tough cookie, you'll make it....
Dana
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: Syrinx entire length of spine

Postby marymac » Sun Jul 01, 2012 7:26 am

Hi Ho All:

Yes my syrinx runs from C3 conus (all the way down). I am still walking, but pretty wabbely (sp). All 3 doctors told me I am not a candidate for surgery, due to osteoperosis. (Just finished the 2 year Forteo program for that, and it worked pretty well for me). And age: just turned 60. I would not be able to move without meds, but the side effects of family and friends are just awful: constantly criticizing how much I take, and basically being treated like a 2nd class citizen; my opinions either aren't heard or don't count. All 3 doctors agree I am the "type of person these meds are made for", meaning anything with the word "oxy" in it. Save for this dearhearted group of friends, I would be so very very alone. Half the time I don't write because I don't want to bring anybody else down. I think I do pretty well after adjusting to the meds: still buy groceries in small amounts and still drive to the doctor: everybody thinks I should sit in a padded room and watch tv. I am a musician, I can still play my piano: thank goodness I write my own music: nobody knows when I forget the words or notes, haha. No one in my life understands or will take the time to try. You all have NO idea how grateful I am to have you. Thank you and please take care and feel the best you can.
Love, gentle hugs, fake smiles
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: Syrinx entire length of spine

Postby andij » Tue Jul 03, 2012 10:47 am

Hi Catrine

Just wanted to say I hope the next few weeks of rehab goes well and you get some good news from your consultant when you see him re your syrinx in Sep.

I had a sub arachnoid shunt in my syrinx in March and found out a few weeks ago that the surgery has not been successful. My syrinx is large but also segmented and although the section of the syrinx in which the shunt was placed did initially drain, the other sections of syrinx must not be communicating with each other as there has been no change to the size of the syrinx since the shunt surgery. Just don't know what to do next. The consultant has said it may just need more time to work and that the may be able to re-direct the shunt drain from the outside of the spinal cord to my stomach (they did not do this initially as i have a VP shunt which drains there). However i am not very optimistic about this. My consultant does not feel any other type of shunt would work and feels there is not much more they can do for me.
Has anyone else had a syrinx shunt that has failed and then found something else for draining/collapsing the syrinx that worked. The good news is that my symptoms have not got any worse over the last few months but i have been told my syrinx is so big I should be paralyzed by now. I am therefore really worried about just leaving the syrinx and not doing anything more to try to collapse it. My consultant feels my body, for whatever reason, is just coping much better than expected with the syrinx but will this always be the case?

I don't know what to do next!

Andij
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Re: Syrinx entire length of spine

Postby razzle » Tue Jul 03, 2012 11:45 am

Catrine
wishing you all the best. keep us posted . Roz
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Syrinx entire length of spine

Postby tennesseewalker » Sat Jul 07, 2012 5:28 pm

My syrinx extends from C-1 to T-8 and measures 15mm at its widest. Had PFD in 96 and the syrinx is slowly "flattening" over time. Parts of the cord are now touching in the center where it never touched before, and is wreaking havoc painwise.

I hope you have better luck with yours.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Syrinx entire length of spine

Postby Catrine » Mon Jul 30, 2012 7:10 am

Hello all,

I said I would post when I finished my rehab stint to update you all on my progress.

Firstly, I would like to say how highly I rate the staff at the spinal injuries unit in London. They were great and really understood what I needed. To have staff all at one place who can deal with physio, work related issues, urology, breathing, bone issues, etc was a blessing. These guys are not neurosurgeons but they understand how to deal with the problems resulting from damage to the spinal cord - the other side of the coin we with SM have to endure. My Birmingham surgeon had said to me last year, "develop a relationship with your local SIU. You'll need it over the long term." I don't know if these type of centers exist in the US but here in the UK they are few and far between.

I was examined by the doctors there and was given a diagnosis of incomplete tetraplegia from C1. If I was a "complete", I'd be on a ventilator just to provide some context.
We did put together a group of exercises focused on my right arm/hand which are slowly paying off. I also have splints for my right and left hands which provide support when I use them. I had a rep in to talk to me about wheelchairs and I've got specs for a new one - which was one of my key goals. Still work to do on the urology front but things are moving.

So on the down side - found out that I have osteoprosis and will need to see a doctor about that. Like I need more doctos in my life! I also tried swimming (used to swim lots when I was younger) but even in a heated pool after 10 min I was hypothermic. Loss of the ability to regulate my body temperature scuppered my plans. At least I was in a place where they could deal with it.

I suppose to be surrounded by patients who were similiar to and in some casers, much worse off than me, did make me realize that at this stage I am still lucky I have the movement I have. But my syrinx remains the ticking time bomb. It won't be until Sept before we see what state its in. I'm trying to stay level-headed as I don't want to get too excited about my "progress" and then have my syrinx rear its ugly head again. Been through that roller-coaster enough already.

So now here's where I'll sound like a broken record once again. Listen to your body, watch your symptoms, find a good NS so that you don't get to the stage where you need a spinal injuries unit. But if you do, they can be quite a support to you.

I'll update again in September.
All the best to my fellow SM's
C
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Re: Syrinx entire length of spine

Postby reedy » Tue Jul 31, 2012 3:14 pm

Hi Catrine,
I'm very glad to hear that the SIU was a good use of time for you. It sounds like you got exactly the kind of care you need - enabling. I've been worried a bit on your behalf while you were gone.
reedy
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Re: Syrinx entire length of spine

Postby syrinx48 » Sat Aug 04, 2012 2:06 pm

Hi Catrine,

I am going to a rehab facility in Germany at the end of October until the first of December. They are specialized in Syringomyelia, which I have. I don't have shunt, but my syrinx runs also through the entire length of my spine. I am on a lot of medication against pain, my spasms have become so worse that I can't walk very long, and a lot more issues. I really do look forward to it, because these therapists know what they are talking about. Just like you said. I got this opportuniteit from my health insurance, and I am very gratefull for that.


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Re: Syrinx entire length of spine

Postby Catrine » Fri Sep 28, 2012 6:21 am

Hello all,

Well, in the on-going story of my syrinx (it should have its own book), things seem to be stabilizing.

It was a very long day at the hospital but good news in the end. I had my MRI on Tuesday and saw my surgeon just after that. He said that things looked good and that the syrinx had collapsed. Of course the syrinx is still there but the fluid seems to be draining out through the syringopleural shunt. I think my surgeon was optimistic as he said that after 6 months (well 8 months in my case) things usually settle down and the surgeons can see the real state of it all. So that is good news :D

However, there remains the 50% chance that the shunt will block. So I think it will be a bit of a waiting game. I don't want to get too excited as I've done that before only to have everything come crashing down. I have a follow-up appointment in 6 months so that's my next check-point.

I still have some good days and bad days so, again, I think I'm just going to have to get used to my new normal. Like I've had my bad headaches back for the past few weeks. But deciding to take one day at a time.

I will be back in the spinal injuries unit for more rehab in January so something to look forward to.

C
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Re: Syrinx entire length of spine

Postby chrisb » Fri Oct 26, 2012 12:05 pm

Mine runs the entire lenght of my spinal cord. it starts between c4 and c5 and then goes all the way down, There are not many of us that have it this way. Glad to know I am not the only one,,,, But not glad at the same time because this condition sucks. Surgery isnt an option for me because it runs the entire lenght of my spain. I have seen several specialists on this. And they have all told me to not let anyone do surgery on me that they are only out to make a name for themselves. He told me that surgery would just make things worse for me and cause it to widen faster. I am considered a terminal case of SM. because it runs the entire lenght of my spinal cord. and They have disabled me. I cant work. and I am not alowed to do basicly anything just lay around on the couch. The theory is the morei stimulate my spinal cord the faster the syrinx grows. and i have proved them right when I do things they dont want me doing. I am hoping that your surgery works, and that it dosent cause more issues. If so that will at least give me some hope that I can fight this thing.
ChrisB
39yr old Army wife with 4 kids.
SM from c4-c5 thoughout entire spinalcord. Compressed C5 and L1. hydromyelia, Osteoporosis.
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Re: Syrinx entire length of spine

Postby Catrine » Sat Oct 27, 2012 7:50 am

Thanks for sharing your story Chris. Sorry to hear there are others out there in a similiar situation to mine.

One question - you said the surgeons could not operate due to the fact that the syrinx runs the entire length of your cord. As mine is a similiar diagnosis, I was wondering why they had ruled out a shunt? Is it that the syrinx is not very wide? Not that I'm suggesting that cutting into the spinal cord is the easy or right option. Just more curious as being classified as terminal would make me think that the syrinx is pretty advanced. None of my surgeons have ever used the word "terminal", although they have gotten quiet when I've asked the question, "what if this doesn't work?"

Thanks and keep your spirits up
C
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