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I have a Tethered Cord. Will it get worse if I don't have surgery?
I had a tethered cord release in 1987. An MRI in 2003 showed that I have another tethered cord. Since then I've tried to find a doctor to do surgery to untether it to no avail. My symptoms have gotten slowly worse since 2003. My question is, if I don't/can't have surgery, will the symptoms get worse and worse? What will be the end result? Thanks, CharlieRae
Forgot to mention, I am two months post surgery. Dr. believes that healing will continue to travel up the spine to the neck.
Heres a timeline.
Year 0: night sweats, still lifting weights and running
Year 1: develop shoulder pain in left shoulder
Year 2: Orthopod says I have rotator cuff tendonitis, lay off the weights, injects cortisone, and does an mri of shoulder with nothing. I develop spasm in my trapezius and neck. Orthopod does mri of cervical and part of thoracic. The thoracic mri report lists "possible syrinx, recommend mri pre post full spine" This was ignored by the doc and I didnt know what it meant.
Year 3: I have been to many PTs and unsuccessfully treated for "trigger points". As an aside, I believe these points are just where the nerve endings are now that I know I have a neurological problem. I develop a burning sciatica that hurts so bad I cannot sit or stand long periods. Halfway through Year 3 we do another MRI of full spine and find the syrinx, was told this is a problem, need to do a consult with Neurosurgeon. By this time I had the leg weakness and gait issues. Could not sit at all, drive car without an ice pack or even sit down in a car without an ice pack. The Neurosurgeon diagnoses me with tethered cord. I was detethered and have regained everything up to T6. I am still experiencing cervical, shoulder, rib, and shoulder blade/thoracic spine pain.
As an aside, if it is legal in your area, medical pot is very effective at treating symptoms of tether, try it.
Year 0: night sweats, still lifting weights and running
Year 1: develop shoulder pain in left shoulder
Year 2: Orthopod says I have rotator cuff tendonitis, lay off the weights, injects cortisone, and does an mri of shoulder with nothing. I develop spasm in my trapezius and neck. Orthopod does mri of cervical and part of thoracic. The thoracic mri report lists "possible syrinx, recommend mri pre post full spine" This was ignored by the doc and I didnt know what it meant.
Year 3: I have been to many PTs and unsuccessfully treated for "trigger points". As an aside, I believe these points are just where the nerve endings are now that I know I have a neurological problem. I develop a burning sciatica that hurts so bad I cannot sit or stand long periods. Halfway through Year 3 we do another MRI of full spine and find the syrinx, was told this is a problem, need to do a consult with Neurosurgeon. By this time I had the leg weakness and gait issues. Could not sit at all, drive car without an ice pack or even sit down in a car without an ice pack. The Neurosurgeon diagnoses me with tethered cord. I was detethered and have regained everything up to T6. I am still experiencing cervical, shoulder, rib, and shoulder blade/thoracic spine pain.
As an aside, if it is legal in your area, medical pot is very effective at treating symptoms of tether, try it.
I am interested in your comment because I am in the process of trying to figure out where to go and what might possibly help me. I have had 2 appointments w/ Dr Henderson and was diagnosed with Chiari, among other things. I was very disappointed with the manner on which my last appointment was conducted and would love to have information on whether or not to trust this doctor.
It is difficult because this seems to be such a specialized field and so many doctors don't know what to do for me.
It is difficult because this seems to be such a specialized field and so many doctors don't know what to do for me.
Try Dr David Garrett in San Antinio, Texas. I am 46. He just untethered mine.
Do not, under any circumstances go to Dr. Henderson. You must trust me.
Do not, under any circumstances go to Dr. Henderson. You must trust me.
Thanks for sharing. I didn't journal, but wish I would have. I was too busy trying to get my phone back so I could try to work. LOL
Hi sorry I missed ur last post as I was away and using my DD's comp....so easy to miss things using a diff system then what u r use to...lol...
I also had issues my whole life and also wondered y no one tried to figure out what was going on with me...I will say my parents did have my tonsils and adenoids removed when I was 7 thinking it would help my breathing....
With this or ne medical condition we may all be similar but we will be quite diff as well.....
Most deff many others do feel much like urself in regards to how we can not compare to someone else, but so many r tempted to do just that when they r told they r going to be scheduled for surgery, first question they ask is what can I expect?....there is no way to tell them, we can say what we went thru, but they may experience something totally diff, that is y we do journal our surgical experiences for others to read.
I understand. I had no choice but to do my surgery immediately as my symptoms were worsening quickly.
I am realizing as I am reading more about TC that I was different all my life, yet no one bothered to figure out why, and that disturbs me. Of course, I am not comparing myself to anyone else's medical issues, most are far greater than mine, and my heart goes out to them. I have insurance, I drive, I take care of grandchildren, I teach and I own and manage a real estate company with nine agents.
You seem to be well-read and educated on these topics, and I am wondering if you have noticed these sentiments in other patients.
I am realizing as I am reading more about TC that I was different all my life, yet no one bothered to figure out why, and that disturbs me. Of course, I am not comparing myself to anyone else's medical issues, most are far greater than mine, and my heart goes out to them. I have insurance, I drive, I take care of grandchildren, I teach and I own and manage a real estate company with nine agents.
You seem to be well-read and educated on these topics, and I am wondering if you have noticed these sentiments in other patients.
I was also dx'd with Chiari and the Drs felt I would have more benefits from that surgery, and so far so good, I still have issues with the TC, but I also had my DD's wedding and lost ins for a time inbtwn so, it was back burnered....
I was also dx'd with Ehlers-Danlos which I need to get to a specialist for that too, but she is out of state and I do not drive, so it is diff to do with appointments being set for a yr away....
I am sure it depends on how the TC release can help, or if u have other issues, and they have to go with the one causing the most problems first, and go from there......I am sure in time that it will be done.
Thanks, we will check out that site. I am starting a fb page with information, but so far I have nothing on it.
SelmaS, what are your reasons for not having the TC release surgery yet? As soon as I was diagnosed, my NS said it had to be done the next week; that I could not wait even 8 weeks, until my school semester ended.
SelmaS, what are your reasons for not having the TC release surgery yet? As soon as I was diagnosed, my NS said it had to be done the next week; that I could not wait even 8 weeks, until my school semester ended.
Hi, most chiari NS's treat tethered cord and do have info on their sites, like the Chiari Institute in NY.....
I also have TC, and have not had it treated yet.....but I did get my info from the Drs there, and many on the Chiari forum here on MedHelp share info...as others also have it.... http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc
I'd really appreciate any info you could share. If you need any help researching a subject please let me know. I love doing research no matter how boring the subject and I've got plenty of time to pass. So please don't think you would be putting me out, it would be a help. This goes to everyone on this post and not just League. Let me know:)
It is confusing. I have been reading everything I can find, and it is still confusing. Most of what I find is either written Wikipedia simple or is written by research physicians for other physicians.
Congenital does mean present at birth or before birth, regardless of the cause (heredity or environment), and some definitions add in within the first month following birth.
My understanding is that cord tethering may occur at anytime, and there are several reasons why it may become tethered.
As I find good websites, I will gladly share, but like you, it is hard to figure out, and MDs seem to only share on a need to know basis.
Congenital does mean present at birth or before birth, regardless of the cause (heredity or environment), and some definitions add in within the first month following birth.
My understanding is that cord tethering may occur at anytime, and there are several reasons why it may become tethered.
As I find good websites, I will gladly share, but like you, it is hard to figure out, and MDs seem to only share on a need to know basis.
Hello,
I have a couple questions about Congenital Tethered Cord Syndrome and Adult onset tethered cord syndrome. I realize that it should be very cut and dry-if you're born with it then its congenital.
Congenital-Does this mean at the time you were born you had a tethered cord, therefore its Congenital?
Situation: I was born with VATER Syndrome. It affects the spine so I was born with severe scoliosis. Then I was diagnoses 12 yrs of age with a tethered cord and had tethered cord release surgery. Then at the age of 28, I was diagnosed with another tethered cord.
Question: Evan though it was diagnosed at 12 and not a birth is this considered Congenital Tethered Cord Syndrome?
Question: Since I had one at 12 does that mean I will always have tethered cord syndrome and then when I become an adult it turns to adult TC?
Question: Once you have one TC, do you automatically have adult TC? Should've I kept closer watch to my symptoms since I already had one?
This is so confusing to me. Normally I don't have problems decyphering medical jargon, but this has stumped me.
Thanks, CharlieRae
I have a couple questions about Congenital Tethered Cord Syndrome and Adult onset tethered cord syndrome. I realize that it should be very cut and dry-if you're born with it then its congenital.
Congenital-Does this mean at the time you were born you had a tethered cord, therefore its Congenital?
Situation: I was born with VATER Syndrome. It affects the spine so I was born with severe scoliosis. Then I was diagnoses 12 yrs of age with a tethered cord and had tethered cord release surgery. Then at the age of 28, I was diagnosed with another tethered cord.
Question: Evan though it was diagnosed at 12 and not a birth is this considered Congenital Tethered Cord Syndrome?
Question: Since I had one at 12 does that mean I will always have tethered cord syndrome and then when I become an adult it turns to adult TC?
Question: Once you have one TC, do you automatically have adult TC? Should've I kept closer watch to my symptoms since I already had one?
This is so confusing to me. Normally I don't have problems decyphering medical jargon, but this has stumped me.
Thanks, CharlieRae
Hello adventurer53,
You mention that you have "adult onset of tethered cord." Will you explain this further? Do you mean that your cord was not tethered until you were an adult, or that you were not diagnosed until adulthood? Also, what caused your tethered cord if it were not congenital?
Despite having symptoms since birth, and being seen over the years by neurologists, neurosurgeons, orthopedists, chiropractors, etc, I was only recently diagnosed and had surgery immediately. I am still shocked, yet so relieved and thankful.
Best regards.
You mention that you have "adult onset of tethered cord." Will you explain this further? Do you mean that your cord was not tethered until you were an adult, or that you were not diagnosed until adulthood? Also, what caused your tethered cord if it were not congenital?
Despite having symptoms since birth, and being seen over the years by neurologists, neurosurgeons, orthopedists, chiropractors, etc, I was only recently diagnosed and had surgery immediately. I am still shocked, yet so relieved and thankful.
Best regards.
Hi! I haven't been on here for awhile as life has been pretty medical. First, I want to apologize for the horrible spelling in the last post I made!! Oh my, I think I wrote it from my Kindle Fire a few days after my knee replacement, but I was shocked when I read it!
My cord was untethered 11 years ago. I also have constant low back pain with electrical shooting pain, painful toes are on fire and yet have a feeling of being cold and wet. Like you, they can't do an MRI because of the spinal cord stimulator. Here's what I was told. They think a lot of my pain is Arachnoiditis. There is no cure for it and it can get worse and be very debilitating. I'm back to trying injections in the caudal area of my low back. My pain Doctor who put the stim in is against pulling it out to see if the cord is the problem. They will do the untethering again only if I have bladder loss or weakness in the legs so much that it is a wheel chair or surgery. Like you, they told me that going back into the cord has diminishing results and every time we have a needle or surgery that goes into the spinal cord, it can cause more scaring and that can wrap around the nerves and cause worse pain.
I know what I told you is not very encouraging. I do get good relief from my stim. Don't be afraid to have them adjust the programs over and over. For the nerve and other pain, gabapentin and Cymbalta, plus Lortab and Celebrex help some for me. I may have repeated myself from my first post, I didn't check back that far. What keeps me positive (most of the time) is my faith in God. The devotional book Jesus Calling by Sarah Young has been such a comfort to me.
Praying you find the Dr. you need and the relief that will ease your pain.
PS Feel free to ask me questions. It's hard to find others with Adult onset of tethered cord.
My cord was untethered 11 years ago. I also have constant low back pain with electrical shooting pain, painful toes are on fire and yet have a feeling of being cold and wet. Like you, they can't do an MRI because of the spinal cord stimulator. Here's what I was told. They think a lot of my pain is Arachnoiditis. There is no cure for it and it can get worse and be very debilitating. I'm back to trying injections in the caudal area of my low back. My pain Doctor who put the stim in is against pulling it out to see if the cord is the problem. They will do the untethering again only if I have bladder loss or weakness in the legs so much that it is a wheel chair or surgery. Like you, they told me that going back into the cord has diminishing results and every time we have a needle or surgery that goes into the spinal cord, it can cause more scaring and that can wrap around the nerves and cause worse pain.
I know what I told you is not very encouraging. I do get good relief from my stim. Don't be afraid to have them adjust the programs over and over. For the nerve and other pain, gabapentin and Cymbalta, plus Lortab and Celebrex help some for me. I may have repeated myself from my first post, I didn't check back that far. What keeps me positive (most of the time) is my faith in God. The devotional book Jesus Calling by Sarah Young has been such a comfort to me.
Praying you find the Dr. you need and the relief that will ease your pain.
PS Feel free to ask me questions. It's hard to find others with Adult onset of tethered cord.
Thank you, selmaS, for the information on doctors in my area. I will have to do some research around the surgery and also call the doctors you gave me to see whether or they take my insurance. Atleast I kind of have a direction to take. Thanks again, CharlieRae
Some good info from selmaS.
Sorry, I should have been more specific about Baylor College of Medicine in Houston at the Texas Medical Center. But, as selmaS shared, there are recognized surgeons nearer you.
My surgeon is a neurosurgeon and Dr. Fraser Henderson in Lanham and Baltimore is with The Metropolitan Neurosurgery Group. They have a website.
Good luck and feel comfortable asking me any questions at all, remembering that I am just a patient like you, who is still in awe of my diagnosis and surgery.
Sorry, I should have been more specific about Baylor College of Medicine in Houston at the Texas Medical Center. But, as selmaS shared, there are recognized surgeons nearer you.
My surgeon is a neurosurgeon and Dr. Fraser Henderson in Lanham and Baltimore is with The Metropolitan Neurosurgery Group. They have a website.
Good luck and feel comfortable asking me any questions at all, remembering that I am just a patient like you, who is still in awe of my diagnosis and surgery.
There is a Dr in Baltimore u might want to check out....Dr Henderson...also, in NC a Dr Rosner, and NY TCI....
Chiari Drs do de-tethering as it is a related condition to Chiari,....I have both, and most of the chiari specialists that I have researched do this surgery, do research on the surgery and y I would suggest looking in that direction.
Hi League,
I live in Delaware so Houston, Texas is about 1500 miles away (give or take). I'm on a very limited budget since I don't work and I have government insurance that makes it extremely difficult to go out of state for any medical procedure. I have gone out of state but only 2 or 3 hours away but even that distance I had to get special permission from my insurance co.
I had to look up Baylor. I didn't know if it was a city or a hospital. Are you talking about Baylor Health Care is Dallas, Texas? For your un-tethering surgery, was your surgeon a spine specialist, an orthopedist, or a neurosurgeon? I don't know which one I should focus on finding.
Any information you can give me, I would REALLY appreciate.
Thanks, CharlieRae
I live in Delaware so Houston, Texas is about 1500 miles away (give or take). I'm on a very limited budget since I don't work and I have government insurance that makes it extremely difficult to go out of state for any medical procedure. I have gone out of state but only 2 or 3 hours away but even that distance I had to get special permission from my insurance co.
I had to look up Baylor. I didn't know if it was a city or a hospital. Are you talking about Baylor Health Care is Dallas, Texas? For your un-tethering surgery, was your surgeon a spine specialist, an orthopedist, or a neurosurgeon? I don't know which one I should focus on finding.
Any information you can give me, I would REALLY appreciate.
Thanks, CharlieRae
Hi League,
Thanks for your response. I haven't had the de-tethering surgery. I can't seem to find a doctor who is willing to do the surgery. I've seen 13 doctors (including Neurosurgeons, Orthos, and Spine Specialists) and I get the same story. Every doctor said the same thing-I need the surgery, but they won't do it bc it's too risky (the end result doesn't out way the surgery risks) and then they refer me to someone else. I've asked what do I do now just keep getting worse until I'm paralyzed and THEN you'll be willing to do the surgery?? So frustrating!!
I got a Peripheral Nerve Stimulator in 2010 to help with pain while I'm trying to find a doctor but thats been a joke. So I just keep taking pain killers and pray to God that my one functioning kidney (I only have one) holds up.
I hope all is well. CharlieRae
Thanks for your response. I haven't had the de-tethering surgery. I can't seem to find a doctor who is willing to do the surgery. I've seen 13 doctors (including Neurosurgeons, Orthos, and Spine Specialists) and I get the same story. Every doctor said the same thing-I need the surgery, but they won't do it bc it's too risky (the end result doesn't out way the surgery risks) and then they refer me to someone else. I've asked what do I do now just keep getting worse until I'm paralyzed and THEN you'll be willing to do the surgery?? So frustrating!!
I got a Peripheral Nerve Stimulator in 2010 to help with pain while I'm trying to find a doctor but thats been a joke. So I just keep taking pain killers and pray to God that my one functioning kidney (I only have one) holds up.
I hope all is well. CharlieRae
First, very difficult finding tethered cord forums and discussion boards, isn't it? I sincerely hope you are doing well and have had your surgery and recuperated by now.
I have a little experience with tethered cord and its surgery. Eighteen months ago, at age 57, I was diagnosed with two intradural conus medullaris tumors at L3-L4, and tethered cord at L2, followed by surgical procedures: T3-L3, L4 laminectomy, durotomy, and resection of tumor and resection of filum terminale, and surgery followed within a few days.
My understanding from my neurosurgeon who specializes in tethered cord and spinal cord surgeries, at a major medical school in Texas, is that things may get worse, which may be the issue selmaS discussed.
Even though my tumors and tethered cord were congenital, and despite having all the symptoms, and multiple exams throughout my years, I was only diagnosed with an MRI, after experiencing several unexplained falls, back pain, and urinary concerns, along with leg swelling. I am so happy I was finally diagnosed and had the surgery, even though the pain was horrid.
My pain and headaches are mostly gone, and I exercise with a personal trainer/physical therapist, without pain meds or muscle relaxers.
I have a little experience with tethered cord and its surgery. Eighteen months ago, at age 57, I was diagnosed with two intradural conus medullaris tumors at L3-L4, and tethered cord at L2, followed by surgical procedures: T3-L3, L4 laminectomy, durotomy, and resection of tumor and resection of filum terminale, and surgery followed within a few days.
My understanding from my neurosurgeon who specializes in tethered cord and spinal cord surgeries, at a major medical school in Texas, is that things may get worse, which may be the issue selmaS discussed.
Even though my tumors and tethered cord were congenital, and despite having all the symptoms, and multiple exams throughout my years, I was only diagnosed with an MRI, after experiencing several unexplained falls, back pain, and urinary concerns, along with leg swelling. I am so happy I was finally diagnosed and had the surgery, even though the pain was horrid.
My pain and headaches are mostly gone, and I exercise with a personal trainer/physical therapist, without pain meds or muscle relaxers.
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