Hello all, I was wondering if any of you have a tethered spinal cord and if you have had the surgery to correct it? I also have CM1 w/ a 10mm herniation, POTS, and more, but what seems to be my biggest problems these days is my back pain, and the numbness and tingling in my arms and my legs. I can no longer stand to do the dishes, cant vaccum the house, fold the laundry, do my hair, and the list goes on. Every move I make is painful and I am not able to be on the go like I'm used to. Its brought my life to a complete stand stil. So I guess what I would like to know is if you had the surgery, did it help? I'm not quite sure I want to go ahead with the decompression just yet, but would sign up to get my back fixed in a heartbeat. Any information pertaining to the tethered cord symptoms and surgery would be greatly appreciated. Thank you. Hope this finds you all having a pain free as possible day.
Thanks for bumping this Mandy. Tahks for your kind words, you're so sweet and i hope your doing better. I think my post may have come off like i was complaining about my back being worse than everyones pain, but that wasn't the case...just the worst thing for me. I know we all have our different levels of pain and other ailments i.e. POTS, EDS, etc. but we can still relate to one another and give our support to each other. sucks how this CM starts off as just that (which is bad enough), then we find out there are several other things to add to it): Take Care,
Kristi Mandy said:
Hey Kristi, so sorry to hear how things are going for you :( Having the head stuff is bad enough, but then adding in back pain and mobility problems, that sucks.
I haven't had either surgery yet, just bumping for others to see.
I hope your day is as pain free as possible as well.
Thanks for posting this publication for me. I've been doing quite a bit of research on it, just dont know what to expect for recovery, etc. After reading this publication, I feel more confident in my decision to go forth with the detehering. From what I read in here, the research numbers seem promissing...more so than the odds of sucessful decompression surgery for the Chiari. So, I can't tha k you enough for posting this for me Abby, it really put my mind at ease and if i could afford to do it next week i would, but unfortunately i have to wait at least another month or two before i can have surgery. so i'm crossing my fingers that i won't continue to deteriorate further by then to where its irreversable. I'll keep researching, and if you come across anyone with TCS, could you point them in my direction so i can ask how their symptoms effected them daily and if they had surgery, did it help?
Abby said:
Hi Kristi,
So sorry your suffering with your back too. I agree with Mandy, Chiari is bad enough to have. Have you read much about Tethered cord in adults?
Here is a little information for you. Hope you feel better soon, know that back problems can be awful.
Performing your original search, adult tethered cord surgery, in PubMed will retrieve 286 records.
Department of Neurosurgery, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
Abstract
OBJECT:
Although postsurgical neurological outcomes in patients with tethered cord syndrome (TCS) are well known, the rate and development of neurological improvement after first-time tethered cord release is incompletely understood. The authors reviewed their institutional experience with the surgical management of adult TCS to assess the time course of symptomatic improvement, and to identify the patient subgroups most likely to experience improvement of motor symptoms.
METHODS:
The authors retrospectively reviewed 29 consecutive cases of first-time adult tethered cord release. Clinical symptoms of pain and motor and urinary dysfunction were evaluated at 1 and 3 months after surgery, and then every 6 months thereafter. Rates of improvement in pain and motor or urinary dysfunction over time were identified, and presenting factors associated with improvement of motor symptoms were assessed using a multivariate survival analysis (Cox model).
RESULTS:
The mean patient age was 38 +/- 13 years. The causes of TCS included lipomyelomeningocele in 3 patients (10%), tight filum in 3 (10%), lumbosacral lipoma in 4 (14%), intradural tumor in 3 (10%), previous lumbosacral surgery in 2 (7%), and previous repair of myelomeningocele in 14 (48%). The mean +/- SD duration of symptoms before presentation was 5 +/- 7 months. Clinical presentation included diffuse pain/parasthesias in both lower extremities in 13 patients (45%), or perineal distribution in 18 (62%), lower extremity weakness in 17 (59%), gait difficulties in 17 (59%), and bladder dysfunction in 14 (48%). Laminectomy was performed in a mean of 2.5 +/- 0.7 levels per patient, and 9 patients (30%) received duraplasty. At 18 months postoperatively, 47% of patients had improved urinary symptoms, 69% had improved lower extremity weakness and gait, and 79% had decreased painful dysesthesias. Median time to symptomatic improvement was least for pain (1 month), then motor (2.3 months), and then urinary symptoms (4.3 months; p = 0.04). In patients demonstrating improvement, 96% improved within 6 months of surgery. Only 4% improved beyond 1-year postoperatively. In a multivariate analysis, the authors found that patients who presented with asymmetrical lower extremity weakness (p = 0.0021, hazard ratio 5.7) or lower extremity hyperreflexia (p = 0.037, hazard ratio = 4.1) were most likely to experience improvement in motor symptoms.
CONCLUSIONS:
In the authors' experience, pain and motor and urinary dysfunction improve postoperatively in the majority of patients. The rate of symptomatic improvement was greatest for pain resolution, followed by motor, and then urinary improvement. Patients who experienced improvement in any symptom had done so by 6 months after tethered cord release. Patients with asymmetrical motor symptoms or lower extremity hyperreflexia at presentation were most likely to experience improvements in motor symptoms. These findings may help guide patient education and surgical decision-making.
I too have been trying to research adult tethered cord issues and surgery to correct it. I have myelomeningeocele by birth and therefore have CM II by default in addition. I was just not TOLD this last part until I was 30. Ah well, I am having more and more symptoms and issues so the surgery may be faster around a corner than I think. Right now the hardest part is getting the stupid front desk women to stop being witches with PMS when I talk to them about trying to get into an appointment. So far this entire week with that was a bust. Wish me success for getting in touch with someone this week or you may be seeing me on the national news for something not so nice, hahaha! ;)
Marni- I feel your frustration with the front desk people, they are nearly impossible at times. I have a Dr. that I really like but his friggin(nicest word i could think of) nurse always blocks my calls and wont let me speak with him when he has told me to specificaly speak with him directly. Haha, nope, never works. I'm rambling, but it is frustrating when we are already at our wits end with our pain and mobility issues to be brushed off like that just isn't right. I'm just worried about how fast this stuff is progressing...what's tomorrow going to bring? Have you spoken with the office manager yet? I had to do that a couple of times and got an appointment for my Husband the next day! Its worth a shot. I wish you all the best, this is not an easy journey for us and it really helps me when we band together to get answers. let us know if you get in and what they say if you feel like sharing. Your Chiarian friend, Kristi MarniSpoons said:
Hi,
I too have been trying to research adult tethered cord issues and surgery to correct it. I have myelomeningeocele by birth and therefore have CM II by default in addition. I was just not TOLD this last part until I was 30. Ah well, I am having more and more symptoms and issues so the surgery may be faster around a corner than I think. Right now the hardest part is getting the stupid front desk women to stop being witches with PMS when I talk to them about trying to get into an appointment. So far this entire week with that was a bust. Wish me success for getting in touch with someone this week or you may be seeing me on the national news for something not so nice, hahaha! ;)
Thanks Abby, it definately put my mind at ease. I also found a video on you tube from the Dr's show, had a gentleman on there that just had his detethering surgery and he seemed to be doing pretty well and mentioned that most of his symptoms had started to go away. If thats how it works, sign me up I'm ready! so tired of being trapped in this body and not being able to do anything without having problems. Tonight my Husband took me to a movie and the whole time I was in severe pain and could not sit still to save my life, arms numb/painful, legs heavy, weak, numb/painful. all that just to go to the movies. i was embarrased, i probably looked like a tweeker or something, lol. I also nearly colapsed in the middle of the Nike store today because by POTS was in overdrive. I have to get this fixed, but have to wait at leasst another month before that may be possible. Thanks for all of your support:) I will keep you all posted on anything I find out. Abby said:
Kristi,
I am glad it helped. We are here for each other. Please let us know how your doing and if you find out anything you want to share with us. We learn from each other. So glad your here with us.
Marni, I am with you girl, If you can get past the front desk and get in touch with the nurse or assistant, you fell like you have accomplished a lot. Wish you the best.
Kristi W. said:
Abby-
Thanks for posting this publication for me. I've been doing quite a bit of research on it, just dont know what to expect for recovery, etc. After reading this publication, I feel more confident in my decision to go forth with the detehering. From what I read in here, the research numbers seem promissing...more so than the odds of sucessful decompression surgery for the Chiari. So, I can't tha k you enough for posting this for me Abby, it really put my mind at ease and if i could afford to do it next week i would, but unfortunately i have to wait at least another month or two before i can have surgery. so i'm crossing my fingers that i won't continue to deteriorate further by then to where its irreversable. I'll keep researching, and if you come across anyone with TCS, could you point them in my direction so i can ask how their symptoms effected them daily and if they had surgery, did it help?
Abby said:
Hi Kristi,
So sorry your suffering with your back too. I agree with Mandy, Chiari is bad enough to have. Have you read much about Tethered cord in adults?
Here is a little information for you. Hope you feel better soon, know that back problems can be awful.
Performing your original search, adult tethered cord surgery, in PubMed will retrieve 286 records.
Department of Neurosurgery, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
Abstract
OBJECT:
Although postsurgical neurological outcomes in patients with tethered cord syndrome (TCS) are well known, the rate and development of neurological improvement after first-time tethered cord release is incompletely understood. The authors reviewed their institutional experience with the surgical management of adult TCS to assess the time course of symptomatic improvement, and to identify the patient subgroups most likely to experience improvement of motor symptoms.
METHODS:
The authors retrospectively reviewed 29 consecutive cases of first-time adult tethered cord release. Clinical symptoms of pain and motor and urinary dysfunction were evaluated at 1 and 3 months after surgery, and then every 6 months thereafter. Rates of improvement in pain and motor or urinary dysfunction over time were identified, and presenting factors associated with improvement of motor symptoms were assessed using a multivariate survival analysis (Cox model).
RESULTS:
The mean patient age was 38 +/- 13 years. The causes of TCS included lipomyelomeningocele in 3 patients (10%), tight filum in 3 (10%), lumbosacral lipoma in 4 (14%), intradural tumor in 3 (10%), previous lumbosacral surgery in 2 (7%), and previous repair of myelomeningocele in 14 (48%). The mean +/- SD duration of symptoms before presentation was 5 +/- 7 months. Clinical presentation included diffuse pain/parasthesias in both lower extremities in 13 patients (45%), or perineal distribution in 18 (62%), lower extremity weakness in 17 (59%), gait difficulties in 17 (59%), and bladder dysfunction in 14 (48%). Laminectomy was performed in a mean of 2.5 +/- 0.7 levels per patient, and 9 patients (30%) received duraplasty. At 18 months postoperatively, 47% of patients had improved urinary symptoms, 69% had improved lower extremity weakness and gait, and 79% had decreased painful dysesthesias. Median time to symptomatic improvement was least for pain (1 month), then motor (2.3 months), and then urinary symptoms (4.3 months; p = 0.04). In patients demonstrating improvement, 96% improved within 6 months of surgery. Only 4% improved beyond 1-year postoperatively. In a multivariate analysis, the authors found that patients who presented with asymmetrical lower extremity weakness (p = 0.0021, hazard ratio 5.7) or lower extremity hyperreflexia (p = 0.037, hazard ratio = 4.1) were most likely to experience improvement in motor symptoms.
CONCLUSIONS:
In the authors' experience, pain and motor and urinary dysfunction improve postoperatively in the majority of patients. The rate of symptomatic improvement was greatest for pain resolution, followed by motor, and then urinary improvement. Patients who experienced improvement in any symptom had done so by 6 months after tethered cord release. Patients with asymmetrical motor symptoms or lower extremity hyperreflexia at presentation were most likely to experience improvements in motor symptoms. These findings may help guide patient education and surgical decision-making.
I would like to know that as well! Decompressed 1/30/13 but the back pain/numbness/tingling///losing strength on left side. Going back to Dr.B 9/16 for follow up & having CT Myelogram/LP ( I have a spinal cord stimulator) so MRI's are out!!
I do not have tethered cord but my NS made sure to check for it before doing the decompression. He said that if a patient has tethered cord he will do that surgery first because it's an easier surgery on the patient and also because he often finds the tethered cord is causing most of their symptoms and once it's taken care of they end up not needing decompressed.
Thanks for the supportive words :) I honestly think ALL of my medical people have gotten together recently and have said, "Okay she's thisclose to losing it. I'll handle this call and you take the next and you, well you tell her..." LOL. Okay, I am really NOT that paranoid but one has to make up something to laugh or the rage will be all consuming. Just an hour ago I got off the phone with the county manager of a home health company who is supposed to be providing personal services as I need them only the front desk girl is completely incompetent AND they have apparently assigned her to do the work of 5 people, but she didn't choose to tell me any of that until she literally snapped at me. Yea, I told her boss to write her up AND that I was following up with my OWN letter AND that I expected to be moved to the other side of the county's caseloads, as I'm square in the middle of two anyway. So, that's been fun on top of the Chiari or maybe shunt issue (now there's a knot that is sore and red like someone hit me with a hammer.) I'm still waiting for the results of the x-ray of my spine/coccyx bone from the fall 2 weeks ago, which is what the nurse said they wanted done instead of me coming in. I have spoken to the office manager. Scary enough but after that talk, it became clear why the front desk women think it is okay to speak to me the way they do. In any case, when I do get in with them, I will bring it up with either doc I see. I prefer the "assistant" doctor over the bigshot. Bigshot is a knot it all which is great in the OR, but in the reg appointment room he grates on me. I am one of those,"I don't care how much you know, until I know how much you care" people to the absolute core. I wish this place had an instant messenger ability. I have several and just really prefer those ways of "instant talking" instead of having to remember to come check for replies or even wade through emails to see if a reply message notification has been sent. IE I think I am just getting lazier in all this. hahaha!!
Hi Goigcrazy and Beth- I found a website that focuses on tethered cord. As far as if it happens after decompression or as a result of, I'm not sure. I have not been decompressed yet and still I'm dealing with the tethered cord.
Here's a brief description I found for tethered cord:
< What is Tethered Spinal Cord Syndrome?
Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. Attachments may occur congenitally at the base of the spinal cord (conus medullaris) or they may develop near the site of an injury to the spinal cord. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence. This type of tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida. Tethered spinal cord syndrome may go undiagnosed until adulthood, when pain, sensory and motor problems, and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time and may be exacerbated during sports or pregnancy, or may be due to narrowing of the spinal column (stenosis) with age. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around the spinal cord. Fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms. /> goingcrazy said:
can someone explain to me what a tethered cord is. and does it happen after the decompression surgery?
thank you for the information. I am just trying to understand what is going on with me I am a year and a half since my surgery for the chiari I am still having lots of problems I have had ct scans and mri they come back fine. my back hurts me so bad right down the spine area and low back pain I have been having bad head aches to where I have to cover my eyes cause I can't stand the light and my neck hurts so bad there is something going on I feel it has not been right since the surgery. I was supposed to have an appointment with my neurologists aug 15 and they called me and changed it till sept the 20 that is way to long I really needed to go in before that.
I have had to lumbar MRI s and in each one the NS said "mild" or "maybe". I have all the symptoms of tethered cord . The most scary one is when I lost all bladder control. I was just recently diagnosed with EDS and found out that I could have tethered cord but because of the EDS , it doesn't show up in an MRI. I have decided to get a second opinion and go to another surgeon because I am getting worse everyday. Ask about EDS and neck instability when you see your neurologist.
Liz- so sorry to hear you're suffering also. I would get that second opinion just to make sure because once these symptoms get worse it seems like its a downhill slide from there. Less than 2 months ago I was able to do things around the house and push through the pain and now I can hardly do anything and spend most of my day in my recliner. I feel like a 90yr old woman. Oh, and the bladder control issue is terrible. I had to start carrying extra panties, lol tmi:) I hope you can find some answers soon. Thanks for the advice on EDS, I'm going to ask my NS the next time I see her.
This is my update...my home health nurse made another 2 calls today to the neurosurgeon's office, making this a total of 5 calls/sent to vm yet ZERO return calls..until the doctor PA finally called my nurse who THEN of course couldn't answer because she was in the midst of dealing with a complicated patient. *sigh* BUT, he left a message pretty much to the point of, "It's nothing that I can anything about, it doesn't seem to be a shunt issue or a Chiari issue...maybe it's an ear infection. I suppose if she wants to, she SHOULD go to the emergency room. My nurse of course CALLED me to tell me about this instead of texting it all.I have HAD. IT. I have a call into my primary care doctor about if I have to get her to type up a referral for me to another neurosurgeon or if I can just call and switch. Medicaid is a pain in every state, just in different ways. AFTER I get another appointment with the new guy, I am going to send a letter to the state medical board about this ridiculous BS that I've had to deal with THIS go around. I'm sure it won't take long for the great state of NC *rolling eyes and gagging* to type a condescending letter to me saying they understand my frustration and have sent a copy of my letter of concern to his office but they do not see any legitimate reason that they should do more than that. That's what they're line was to me when I wrote a letter of complaint about a former primary care doctor who refused to write me a referral to a home health company because I had a pressure ulcer on my heel that was red and shooting pain all the way up my leg (I've got NO FEELING in my feet normally, so I'd say there was a problem!) and by the time I had been admitted to the hospital for an out of control kidney infection that would only respond to IV meds, they saw my foot and called in a podiatrist/surgeon who had a FIT and had me in the OR within 24 hours. He almost had to amputate my foot at that point, things were THAT BAD. And the state wasn't doing anything but showing her my letter of concern. Please. Oooops. I apologize for going off the rails here and off topic. Guess it bothers me more than I thought still. I need some GOOD news medically speaking and SOON.