Aa
Dura Stretching
I have SM, not Chiari. My sryinx is idiopathic and very large. The "dura" where my syrinx is located is very thin and my syrinx is bulbous, rather than long and strand-like. It's almost like a balloon.
Yesterday, my PT started me doing stretches that are designed to stretch my dura-the "skin" that covers the spinal cord. He has me doing chin tucks and leg lifts in certain positions to gently stretch my spinal cord in a careful controlled way.
Has anyone else heard of this? Ideas on whether this could be harmful?
Today my back hurts a lot more than it had. The burning is more severe.
Appreciate anyone's thoughts on the matter or any experience with this technique or if anyone has a syrinx like mine. I have my MRI posted on my home page if anyone is interested.
Thanks!
Yesterday, my PT started me doing stretches that are designed to stretch my dura-the "skin" that covers the spinal cord. He has me doing chin tucks and leg lifts in certain positions to gently stretch my spinal cord in a careful controlled way.
Has anyone else heard of this? Ideas on whether this could be harmful?
Today my back hurts a lot more than it had. The burning is more severe.
Appreciate anyone's thoughts on the matter or any experience with this technique or if anyone has a syrinx like mine. I have my MRI posted on my home page if anyone is interested.
Thanks!
Dear Ray,
I am sorry to hear of your troubles, your symptoms, and your lack of much choice in specialists. I read the article (above) on neurenteric cysts. (It was all new language for me so I may have to re-read it). It is possible I have a version of this, too. My NS's have told me I could have been born with an abnormality that set up the conditions for my syrinx. Could this possible be it?
I know you have explored all your alternatives for medical care. I have also discovered that every doctor has a different idea or plan, based on his particular bias. Basically, they are all humans first, and surgeons second. As you know, it is up to the patient to sort things out as best they can. First thing is education, which you have no doubt done. Next is finding the best doctors, a process which has its own economic and political barriers. I have only one suggestion for you, if you are open to hearing more suggestions?
Perhaps you can find a research hospital, in Ireland, or in some other land, that would like to take you on. Your case seems very interesting and there may be a surgeon in one of these places which would love to delve deeply into your spine, so to speak. Be very persistent and you may find the right fit.
I hope your radiologist has useful information, and can refer you to the best care available.
Good luck to you.
Amy (in the US)
I am sorry to hear of your troubles, your symptoms, and your lack of much choice in specialists. I read the article (above) on neurenteric cysts. (It was all new language for me so I may have to re-read it). It is possible I have a version of this, too. My NS's have told me I could have been born with an abnormality that set up the conditions for my syrinx. Could this possible be it?
I know you have explored all your alternatives for medical care. I have also discovered that every doctor has a different idea or plan, based on his particular bias. Basically, they are all humans first, and surgeons second. As you know, it is up to the patient to sort things out as best they can. First thing is education, which you have no doubt done. Next is finding the best doctors, a process which has its own economic and political barriers. I have only one suggestion for you, if you are open to hearing more suggestions?
Perhaps you can find a research hospital, in Ireland, or in some other land, that would like to take you on. Your case seems very interesting and there may be a surgeon in one of these places which would love to delve deeply into your spine, so to speak. Be very persistent and you may find the right fit.
I hope your radiologist has useful information, and can refer you to the best care available.
Good luck to you.
Amy (in the US)
Hi Amy,
Where I live (Ireland) unfortunately we only have 11 Neurosurgeons & 23 neurologists for a population of 4.5 million people with a waiting time of 2 years to see a NS. I have had a second opinion from a NL and he has arranged to have my Scans looked at by a US based Radiologist.
I have an unusual Congenital malformation of my Spine in the Cervical/thoracic junction (see Journal link below) along with a 5mm Herniation. My NS and NL's have never encountered this Cervical/thoracic anomaly before, my NS feel's it is the cause of my Herniation but my NL is not convinced and I am caught in the middle lol, as you can imagine it is hard to have confidence in these Doctors
I am also on Lyrica. I also have a Neurogenic bladder witch my urologist feels is due to a breakdown of neural pathway's in the spine. Fasciculation in both calf muscles witch Dr's feel is due to breakdown of neural pathway's. I have other symptoms such as vision, memory problems, dizziness & vertigo with Nystagmus (Involuntary eye movement) and balance issues that my Dr's feel can not be explained by the Cysts in my spine, each of my Dr's have differing theories as to what is causing these problems.
So for now I am waiting to hear back from this Radiologist, when I hear from him I will decide my next move.
Ray
Neurenteric Cyst : http://www.medhelp.org/user_journals/show/282910/Neurenteric-Cysts?personal_page_id=647417
Where I live (Ireland) unfortunately we only have 11 Neurosurgeons & 23 neurologists for a population of 4.5 million people with a waiting time of 2 years to see a NS. I have had a second opinion from a NL and he has arranged to have my Scans looked at by a US based Radiologist.
I have an unusual Congenital malformation of my Spine in the Cervical/thoracic junction (see Journal link below) along with a 5mm Herniation. My NS and NL's have never encountered this Cervical/thoracic anomaly before, my NS feel's it is the cause of my Herniation but my NL is not convinced and I am caught in the middle lol, as you can imagine it is hard to have confidence in these Doctors
I am also on Lyrica. I also have a Neurogenic bladder witch my urologist feels is due to a breakdown of neural pathway's in the spine. Fasciculation in both calf muscles witch Dr's feel is due to breakdown of neural pathway's. I have other symptoms such as vision, memory problems, dizziness & vertigo with Nystagmus (Involuntary eye movement) and balance issues that my Dr's feel can not be explained by the Cysts in my spine, each of my Dr's have differing theories as to what is causing these problems.
So for now I am waiting to hear back from this Radiologist, when I hear from him I will decide my next move.
Ray
Neurenteric Cyst : http://www.medhelp.org/user_journals/show/282910/Neurenteric-Cysts?personal_page_id=647417
Ray-
I am so sorry for your symptoms. This stinks, doesn't it!
My surgeons emphasized the risks of surgery, too, and the statistics regarding improvement of pain (only 50% of patients have pain relief from surgery-and some even get worse.) They told me the risk of becoming a quad is 1% which doesn't sound very high until you start comparing it to other surgical risks (as low as 0.0002 % for death by general anesthesia and 0.5% for infection in a knee replacement).
Of course, I'm not a doctor OR a statistician but these are numbers I was able to google in a simple search.
They both said if I was their (daughter, wife, mother) they would recommend not having surgery until I lost "function". They explained function loss as being numbness in my hands such as they stop working very well, stumbling when I walk, definitely loss of bladder control. They also said the decision was all mine and only mine to make. They said they have had patients who opted for surgery only for pain, but the results are mixed. They said any time you puncture the spinal cord you have damage of some sort and it is unpredictable.
As far as the reversibility of symptoms, they predicted no reversal of pain but perhaps a reversal of functionality, depending on how long I waited to have the surgery.
I was also told the shunt surgery has a high failure rate (as much as 85%) meaning the shunt becomes clogged, has to be removed, then you have to have another put in, it becomes clogged, etc...meaning lots of surgeries.
Perhaps if I wait, the technology will improve, but I'm not holding my breath (besides I learned that is bad for syrinxes! lol).
The treatment plan for my pain is lyrica. That's pretty much it. I suppose if I insisted, the docs would give me narcotics but I don't want to go down that road. I have a teenager at home, lots of driving to do...etc. I am trying to explore all the alternative remedies. I am meditating sometimes (but it takes practice! which I don't always do), walking daily, vitamins, soaking in a hot tub (that's the best). Today I am trying acupuncture for the first time. I'm looking forward to it!
Have you had more than one opinion? Do you have Chiari as well? My situation might be very different than yours, so its hard to compare. My syrinx is idiopathic, meaning they can find no cause. Shunt surgery is my only option. I think that more than one opinion is always good. Especially seek out a NS who is nationally recognized in SM or Chiari. I highly recommend it. I don't think "ordinary" surgeons have very good knowledge of these conditions.
Luckily for me, there are 2 such NS's in my area. One is a nationally recognized expert on Chiari and the other is internationally known for his SM experience. If you must travel to get opinions like these, I encourage you to do so. Both of these NS"s staff will help you find a hotel nearby and help you find transportation to/from airports. You can send them your MRI reports/scans and they can determine if your case warrants a trip to their office and then you're in. I'll bet you can find NS's like this no matter where you live.
Good luck to you! Please keep me in the loop.
Amy
I am so sorry for your symptoms. This stinks, doesn't it!
My surgeons emphasized the risks of surgery, too, and the statistics regarding improvement of pain (only 50% of patients have pain relief from surgery-and some even get worse.) They told me the risk of becoming a quad is 1% which doesn't sound very high until you start comparing it to other surgical risks (as low as 0.0002 % for death by general anesthesia and 0.5% for infection in a knee replacement).
Of course, I'm not a doctor OR a statistician but these are numbers I was able to google in a simple search.
They both said if I was their (daughter, wife, mother) they would recommend not having surgery until I lost "function". They explained function loss as being numbness in my hands such as they stop working very well, stumbling when I walk, definitely loss of bladder control. They also said the decision was all mine and only mine to make. They said they have had patients who opted for surgery only for pain, but the results are mixed. They said any time you puncture the spinal cord you have damage of some sort and it is unpredictable.
As far as the reversibility of symptoms, they predicted no reversal of pain but perhaps a reversal of functionality, depending on how long I waited to have the surgery.
I was also told the shunt surgery has a high failure rate (as much as 85%) meaning the shunt becomes clogged, has to be removed, then you have to have another put in, it becomes clogged, etc...meaning lots of surgeries.
Perhaps if I wait, the technology will improve, but I'm not holding my breath (besides I learned that is bad for syrinxes! lol).
The treatment plan for my pain is lyrica. That's pretty much it. I suppose if I insisted, the docs would give me narcotics but I don't want to go down that road. I have a teenager at home, lots of driving to do...etc. I am trying to explore all the alternative remedies. I am meditating sometimes (but it takes practice! which I don't always do), walking daily, vitamins, soaking in a hot tub (that's the best). Today I am trying acupuncture for the first time. I'm looking forward to it!
Have you had more than one opinion? Do you have Chiari as well? My situation might be very different than yours, so its hard to compare. My syrinx is idiopathic, meaning they can find no cause. Shunt surgery is my only option. I think that more than one opinion is always good. Especially seek out a NS who is nationally recognized in SM or Chiari. I highly recommend it. I don't think "ordinary" surgeons have very good knowledge of these conditions.
Luckily for me, there are 2 such NS's in my area. One is a nationally recognized expert on Chiari and the other is internationally known for his SM experience. If you must travel to get opinions like these, I encourage you to do so. Both of these NS"s staff will help you find a hotel nearby and help you find transportation to/from airports. You can send them your MRI reports/scans and they can determine if your case warrants a trip to their office and then you're in. I'll bet you can find NS's like this no matter where you live.
Good luck to you! Please keep me in the loop.
Amy
I hope you feel better soon.
I would have two question that if I was you I would need answered.
What is the treatment plan (if any) for your pain, what is your Doctors definition of l"oss of function"
If you wait until you have loss of function will the loss of function be reversible?
I was told this by my NS two years ago, he daid the risks for surgery were to high and he would not think about surgery until my motor function was suffering. Back then I could walk normally and most of my symptoms were related to dizziness/vertigo pain & loss of sensation. Today I can not walk more than 1/4 mile without resting, my legs will not do what my brain wants them to do, yet my NS will not do anything.
Ray
I would have two question that if I was you I would need answered.
What is the treatment plan (if any) for your pain, what is your Doctors definition of l"oss of function"
If you wait until you have loss of function will the loss of function be reversible?
I was told this by my NS two years ago, he daid the risks for surgery were to high and he would not think about surgery until my motor function was suffering. Back then I could walk normally and most of my symptoms were related to dizziness/vertigo pain & loss of sensation. Today I can not walk more than 1/4 mile without resting, my legs will not do what my brain wants them to do, yet my NS will not do anything.
Ray
Thanks, Selma and Rod...I talked with My NS's NP and she said not to do the dura stretching technique anymore. BTW, I learned it's called "nerve flossing." Today I feel as though I've been tasered. Prickly stabbing in my chest and deep stabbing in my back.
Back to resting and letting everything quiet down.
I've talked to 2 NS's and they both say wait to do surgery for "loss of function" and not to do the surgery only for pain symptoms. My function is just fine so I guess I have to remain grateful for that and learn to accept and live with the pain.
Both NS's are experts in syringomyelia.
Thanks for your advice, and for listening.....
Back to resting and letting everything quiet down.
I've talked to 2 NS's and they both say wait to do surgery for "loss of function" and not to do the surgery only for pain symptoms. My function is just fine so I guess I have to remain grateful for that and learn to accept and live with the pain.
Both NS's are experts in syringomyelia.
Thanks for your advice, and for listening.....
COMMUNITY LEADER
No worries...I would think scar tissue could develop newhere and since ur syrinx is idiopathic it is possible they did not consider that.U may have had a fall as a small child that caused ur syrinx, they can be the result of an injury.......
Good luck and do keep us posted
"selma"
Tethered cord seems to be ruled out in my case, although my syrinx is very unusual in its shape and it seems as though something is strangling my spinal cord, maybe scar tissue that doesn't show up on an MRI.
Thanks for your advice. I will check with my NS.
Thanks for your advice. I will check with my NS.
COMMUNITY LEADER
Hi..this is the first time I heard of this method.....I do not have a syrinx, and I wonder the same as u if this could hurt more than help.....not knowing I would ask my NS.
Have u also ruled out tethered cord?....just wondering about the burning and if u might also have that as a result of how large the syrinx is.
Please keep us posted on ur progress
"selma"
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Ray