Syrinx entire length of spine

[chrisb]

The syrinx isnt fully blocking my spinal cord yet. But it is widening as it goes down. I am not sure why they labled me as terminal. It is still growing just starting to widen more as it goes down instead of widening more in my neck and fully blocking my cord. Surgery isnt an option for me due to how long it is, they said a shunt wouldnt work because the syrinx is so long. The only surgery that wold work is widening my spinal column around the cord. But the issue with that is my bones are brittle. I compressed L1 and C5 when I was in my 20s and that is what they say caused me to get SM. I have a degenerative bone diease in my back and widening area around my spinal cord will only make the condition worse. i would end up with rods from the neck down which would limit my range of motion. The plan they have set out is, to wait until it paralizes me and then go in and try to get somethings back. But not before. I saw 5 NS before we had one finailly explain to us why all we kept hearing was "I cant help you" and then being referred to anoher NS. And he sat both my husband and myself down and told us what we can expect and how this will progress. He couldnt give a timeline of course. But so far he has been right on the money. The numbness I can deal with. I can even deal with my legs going dead every now and again. ( by "dead" i mean i loose all feeling and use of them for a time, sometimes its only a few mins but it has lasted up to half an hour before) My left side is weaker then my right. The pain is what drives me nuts. On bad days I sleep alot. And sometimes I miss days, But honestly when it gets that bad, i would rather sleep threw it. Pain meds along with sleeping pills work sometimes. But I do have those days that the pain is so bad that I cant sleep. My husband handles it well thank god. His only major complaint is that he wishes that there was a way to control the pain better. And the meds make me get sick to my stomach alot so eating can be hard sometimes. The dr told me the pain is caused by the syrinx making my nerves die. Never realized that nerves dying could be so painful. And honestly its a lesson none of us ever needed.
As for it being advanced, I have no clue. I have read up on Sm as much as I can. And everything I have read besides it being so long it dosent seem like it would be "that advanced" to me. It is only 8 or 9mm wide at the widest part. But I am also tiny so the dr said that even though it dosent seem that wide from everthing I have read, it is very wide for me due to my size. In my neck it is almost touching the sides of my spinal cord. And I do know that the location of the widest part has my drs concerned. Something about the c spine and being able to breath on my own.
I have tried physical thearpy, massage thearpy, and a few other things. My back muscles are always tight, they never fully release. And they spasm alot.
I stay positive, They have no clue when my time will come, and I plan on living a long life. Drs can be wrong sometimes too, they are only human like the rest of us after all.
I am hoping that your surgery works out well. I found this site several years ago when I was dxed with SM. And i stopped coming to it. And for some reason I decided to log back in and read what others are going threw. It helps to know that I am not alone in this, But at the same time I hate knowning others are going threw the same things I am.

[Catrine]

Interesting. I think you have a very conservative NS. It might be that the brittle bones are problematic for him/her.

What I find interesting is the fact that my syrinx is longer than yours and yet the surgeon was ok with going in and placing a shunt. So unless you have a segmented syrinx, I don't see why length would be a factor. My surgeon went in as low as he could to insert the shunt to limit the damage to the spinal cord from the surgery. I still have some paralysis but, as my surgeon has said, the syrinx has collasped. My syrinx was much wider at the bottom but was beginning to damage nerves farther up (loss of arm movement) so he said going in down below - where the damage was extensive anyway - was the best course.

As I continually say on this site, I am not a doctor, however if it were me I'd ask if a shunt would buy you more time. Apologies if you've already seen all the experts in the US. I did send my scans and notes to Dr Barath Green in Miami and he agreed with my surgeon here in the UK that a shunt would be the best move. I had to wait for his opinion but he did contribute to the handbook on SM put out by ASAP so I figure he knows what he is talking about.

Excuse the meddling
Catrine

[chrisb]

mine is wider in the neck and not very wide at the base of it. So they would have to go into the neck area to put a shunt in. No clue though, I do know that my scans where sent to alot of different Drs here in the U.S. And they were sent off to a Dr in Bayor who is one of the top specialists for CM/SM. He looked over my scans and said that he didnt see me himself that surgery wouldnt help me. other then him i have no clue who actually got them. I deal with alot of military Drs since my husband is in the Army. And the Army Doctors where set on me having surgery. So they kept pushing until I saw that last Dr in Texas. I had a stroke in 09 due to too much presure on the brain caused by CSF. And that is why they where pushing so hard. I havent had any issues since then. They arnt sure why i had the build up and they let me go from the hospital after scaring the hell out of us saying i had to have surgery to relieve the pressure on my brain. But in the end they didnt do anything but watch it. I havent had any issues like that since then. They keep an eye on it more closely now though. And have told me that if I get any headaches to go straight to the Er to make sure presure isnt building up again.
The Army actually moved us from Alaska to Texas so i could see a Ns that knows about and deals with SM. We have moved up to Ny state since then and now I am dealing with a new team of doctors. I was recently sent to the U of R neurology dept. And he looked at my scans asked what i had been told about it. and he agrees with everything in Drs in texas had already said. But he wants to keep a closer eye on it then the Drs in Texas had been doing. When they first Dxed me I had an MRI every 3 months. Then after a year it went to once a year. He wants me to have one every 6 months again.
The syrinx isnt segmented at all, its all in one long peice. But like i said it isnt very wide at the base. That might be the deciding factor for them who knows. I just got to the point I was tired of seeing Ns drs that kept telling me over n over they couldnt do anything for me. My husband is retireing next year So we have been trying to figure out where we want to live. It has to be close to a NS that deals with SM. and that limits where we can move to.

And no dont worry it isnt meddling at all to me. You have the same condition as I do. And it is interesting to me how differently the Dx and surgery options are for alot of us. And no 2 Syrinx are the same just like no 2 people are the same.

[reedy]

Have you asked for a consult with Dr John Heiss at the NIH, or Ulrich Batzzdorf at UCLA?

I think you need to find out which NSs have commented on your MRIs and what they said. There is no one single right answer - there are only a range of informed (or uninformed!) opinions and procedures with varying levels of risk.

[chrisb]

No I havent and i should. But I cant make long frives so my husband has to take me, and him being military makes it hard sometimes. I willtalk to my dr about sending my Mris to Dr. Heiss
Thanks for the info and the Drs name

[Catrine]

Hello again all,

It's been a while since my last post. Been busy ticking things off of my medical to-do list. In fact I had various medical appointments every week from mid-Oct until the beginning of Dec. December was my break before going back on the medical merry-go-round in Jan.

I was back in my spinal unit for a week mid-Jan. Progress has been slow but going in the right direction. 6 months of doing my exercises daily have paid off. I've improved by "one muscle class" (I guess it's a measurement of muscle strength) in many of my arm and core areas. So let that be an incentive for those of you working to gain back strength/functionality - DO YOUR EXERCISES I will see the team again in early summer but have been left with a new exercise program to get on with in the meantime.

Have two new wheelchairs - one indoor chair so I can keep using my arm; one outdoor chair so I get a bit more independence. I've even begun doing limited hours back at work. So a bit more normality in my life.

Bladder issues continue so hope I can get to a workable resolution in that area. I also need to figure out what to do about my blocked VP shunt. New MRI scheduled for March so fingers crossed that my syringopleural shunt is still doing its job.

So all in all, more good than bad in this update. Hope that gives some of you a good story to hang on to as you search for diagnosis or wait for treatment.

Keep your spirits up!
C

[gunflint]

You have a great attitude. Sometimes it helps to read what others are going through and how they handle it. Your attitude and determination are inspiring, thanks.

[gunflint]

Sorry double post.

[reedy]

You are an inspiration, Catrine!
I've been bad about my assigned exercises, but I knew that you were doing well about yours so one day instead of doing my boring assigned things, I just went out and joined the local gym. There are all kinds of folks there, including people in wheelchairs (not many, but there, nonetheless). Turns out there is also a hefty discount for disabled people to join (a new programme just launched). Although its more hassle to go to the gym, I've been doing it now! And feeling the benefit.

[LANERS]

It so nice to hear what others are going.through. thanks for sharing! My syrinx goes fromC 5 to T11. It's widest part is at 3.8mm. I think your syrinx has to be over 10mm for a shunt. Please correct me if I am wrong.Wideness is what determines shunt surgery not length. What all have you done that has led to progression of symptoms and widening of your syrinx?

[Catrine]

I think a number of factors influence the surgical decision. I've never been given a number in terms of width or length. The main thing the NS will want to know is if you are seeing a serious deterioration in the quality of your life. Spinal shunt surgeries are risky and, if they place a shunt directly into the spinal cord, will permanently damage the nerve pathway leading from that area. Thus the benefits must outweigh the risks before they go ahead with an op. And bear in mind that shunts can and often do block.

The quality of life deterioration should be coupled with a view on length, width, location, etc. Prgoression is also a factor - if the syrinx is growing more quickly then perhaps another factor to go ahead. Earlier posts of mine on this thread detail some of the symptoms/complicatons I was having.

I wasn't necessarily doing anything to increase the size of my syrinx. SM is a slowly progressing condition. I simply reached a stage where my syrinx had expanded so much over time that I hit a tipping point where my quality of life was rapidly heading downhill. I believe that the best thing is to keep note of your symptoms and their progression. Then match this against MRI's (for me it's every 6 months, for others who are stable every year or two) to get a better read on what the next step should be. Hopefully you will have an NS who is willing to listen and work with you on a plan.

C