Talk:Tethered spinal cord syndrome

I am writing on here because I have tethered spinal cord syndrome. I was diagnosed last year in 2009 and had a double "untethering" surgeries. I have experienced most of the symptoms that are explained in the article here. I have been pretty much in a wheelchari since being diagnosed even after surgery and it is due to the fact that my cord keeps tethering and forming cysts that tether it to my spine. I have lost bladder control and have been on three different meds to help try to control it which are helping a little bit, I also take anti-depressants and seizure meds for all the pain and they keep increasing the doses on both to keep up with the pain. I was reading some of the comments on here and I read on persons comment on how his wife was able to have children, count yourself blessed because I was told that if I were to have a child it would further stretch my cord and put so much pressure on it that it could snap as well as the fact that my child would more than likely be born with it or spina bifida. But I just wanted to say it is a very strange and uncommon disease but at least there are things that can be done to help it and manage it unlike so many others and I am very thankful for websited such as this one for putting out the education or information for people to understand what we go through on a daily basis and it is noce to know you are not the only one.

References

This article needs to site some references. Chefyingi 18:46, 16 August 2007 (UTC)

I'm deleting a lot of OR. I'm placing it here for accessibility for review and rewrite. Follows:

Occult Tight Filum terminale Syndrome

In addition to the 'typical' tethering that you will find lots of information on, there is a more recently recognized variation referred to as "Occult Tight Filum terminale Syndrome". In this variation, the Filum (a piece of tissue or tendon at the base of the spinal cord that joins it to the base of the Backbone) thickens or hardens and causes downward pressure on the spinal cord. This can actually cause Scoliosis as well as most of the other symptoms of the more typical tethered cord. This can be diagnosed the same way with the CINE MRI and by checking symptoms. Be aware that this is a fairly newly recognized syndrome. In many areas, doctors simply do not have the time to stay up on these types of advances. We found that with our kids who had this that doctors tried to treat for more 'mundane' things such as urinary infections with antibiotics, night wetting with trainers without going to the root cause until many many visits had been made. Parents need to inform themselves today and be as educated as our doctors. (Some bias, here, but it is true). Adults can have this and it can show up as early back degeneration, upper neck & shoulder pain, chronic leg pain (esp. the zyatic nerves & thighs), women can show frequent urinary infections or yeast infections and nighttime runs to the bathroom. Unfortunately, these can be caused by 'old age' as well, so work to learn your own body and help the doctor. My wife was diagnosed with this only because at 34 she had the back of a 60 year old and was told she would soon not be able to walk because of the degeneration. We researched this because it happened that our daughter was diagnosed with severe TSCS because the filum was non-elastic and was causing her all sorts of problems.

[edit] Treatment

In children, early surgery is recommended to prevent further neurological deterioration, including but not limited to chronic urinary incontinence. In adults, surgery to free (detether) the spinal cord can reduce the size and further development of cysts in the cord and may restore some function or alleviate other symptoms. Tethered Cord Syndrome is causally linked to Chiari Malformation and any affirmative diagnosis of TCS must be followed by screening for Chiari's several degrees. TCS was just recently related to Ehlers-Danlos Syndrome which should also be screened for upon a positive TCS diagnosis.

Tethered Cord Syndrome presents varied and almost uncontrollable neurophenomenae in pediatric cases.

Other treatment is symptomatic and supportive. NSAIDs, opiates, synthetic opiates, Cox II inhibitors, off-label applications of tricyclic anti-depressants combined with anti-seizure compounds have yet to prove they are of value in treatment of this affliction's pain manifestations. There is anecdotal evidence that TENS units may benefit some patients. Treatment may be needed in Adults. This new version of tight filum is being found in adults who were asymptomatic as young adults, but as Adults are finding lower back degeneration, Scoliosis, neck & upper back problems and developing incontinence and bladder control issues. This syndrome has been overlooked and under treated (opinion of contributor) for years, and as a result many people are walking around with problems that might be resolved with some research and good diagnostics. Having been through 3 surgeries and am working with doctors on a 4th, we are finding that this is a very difficult to nail down problem. The filum can also show up with Chiari, sometimes referred to as 'Arnold-Chiari', but most doctors just call it Chiari. This is where the brain is pulled or lowers into the top of the spine.

[edit] Prognosis

With treatment, individuals with tethered spinal cord syndrome have a normal life expectancy. However, most neurological and motor impairments are irreversible.

[edit] Related Disorders

[1]http://en.wikipedia.org/wiki/Kyphosis This can happen, it is rare, but I have seen a couple cases where this & the Chiari & the tight filum were all present. The diagnosis of this is long and arduous.

Ends Mzmadmike (talk) 14:57, 27 February 2008 (UTC)

I tried to do some cleanup and add some tags. Obviously, whoever did most of the work on this article has done a lot of research and is to be commended. However, it needs to be put into more encyclopedic format with references to clarify it and assist readers in finding more information. The subject is outside my league, but I can help with formatting. Can some others try to chip in and make this work better? There's a lot of good information here, it's just not sourced.Mzmadmike (talk) 23:57, 23 March 2008 (UTC)

Information

Guys, I am sorry, but I am a total rookie (newbie) to Wiki, but am heavily involved in this issue because 3 of my 4 kids and my Wife have this and in researching it, our kids have a 75=% chance of passing it along, so I want as much solid information out there on this as I can. I figured my grandkids may be looking for this information and I can't guarantee that I will be here to give it to them 1st hand.

Here is a copy of the article that our doctor wrote that she said we could post and approved the GFDL on. She said we could use any/all of the text as long as we kept the references/acknowlegements in the final so we would know her sources. That have been several follow on articles published by the same journal. I am contacting these doctors for similar permission. My understanding of Journals is that they are considered Public domain for non-commercial purposes & research, ? Which Wiki is right?

Original Paper Pediatr Neurosurg 2004;40:51–57 DOI: 10.1159/000078908 Occult Tight Filum terminale Syndrome: Results of Surgical Untethering Monica C. Wehby Patrick S. O’Hollaren Keyvan Abtin Jenny L. Hume Benjamin J. Richards Divisions of Pediatric Neurosurgery and Pediatric Urology, Emanuel Children’s Hospital, Portland, Oreg., USA Monica C. Wehby, MD Microneurosurgical Consultants, P.C., Legacy Emanuel Hospital 501 N. Graham, Suite 315 Portland, OR 97227 (USA) Tel. +1 800 814 4219, Fax +1 503 287 0705, E-Mail monicawehby@hotmail.com ABC Fax + 41 61 306 12 34 E-Mail karger@karger.ch www.karger.com © 2004 S. Karger AG, Basel 1016–2291/04/0402–0051$21.00/0 Accessible online at: www.karger.com/pne

[Presumed copyright violations deleted, sorry. {{Nihiltres |talk |edits}}]

—Preceding unsigned comment added by Mprewitt007 (talk • contribs) 22:34, 26 March 2008 (UTC) 22:37, 26 March 2008 (UTC)Mprewitt007 (talk) Signed Mark Prewitt

Sadly, journals definitely fall under copyright, and there's no indication that this one's freely-licensed or public domain, so I've deleted its text here. If your doctor is one of the authors, then you can definitely look into having them make it open-access and/or freely-licensed; you'll probably want to read Wikipedia:Donating copyrighted materials along the way to understand more. {{Nihiltres |talk |edits}} 15:35, 10 March 2016 (UTC)

i need answers

I am 63, born with spinal bifida occulta. Lived with lower back pain all my life. A few months ago started to get pain in legs. I went for MRI and it showed a tethered cord, with no neural complications. I was now referred to a neurosurgeon. In the meantime (because you cannot get apointment right away) what do i do or dont do. Noone has told me what to do or not do for the next 2 weeks. Can i drive, walk , sit at my desk and work. It seems I cant get anyone to answer my questions. The neurologist said to wait and talk to the neurosurgeon, he wants to make sure he didnt miss anything. My PCP tells me to talk to the neurologist. I am besides myself. I have no other symptomn right now except back pain and leg aches. Does anyone know if i should continue my lifestyle or not. Also does anyone know if operation is the only answer. If i choose not to operate will I get worse. Is the operation the only way out of this condition,and if so at my age (which i am healty otherwise)will i end up worse. Is it safe to untether a bunch of nerves and the end of the spine. I am sooooo scared I will end up brain dead or unable to move. Is there any statistics on this for adults. I know I am asking alot of questions but i am trying to ease my mind until i see this neurosurgeon in 2 weeks. —Preceding unsigned comment added by 24.189.51.205 (talk) 13:20, 18 April 2010 (UTC)

Mprewitt007 (talk) 19:05, 8 June 2010 (UTC) Sorry, I just saw this, Be normal until the surgery, there isn't much you can do until they cut the cord if it is the phylum, if it is tethered differently.. We don't know your lifestyle so hard to give advise. If your doctor can't give you that information, my advise is, use common sense and don't do as much as your normally do until you talk to the surgeon. Though by now, you've probably had the surgery... So, How did it go? Any relief or change?

medical articles and editing

I strongly feel that medical articles should be written by physicians and medical researchers. While anyone can contribute to Wikipedia, it is important that articles (and, I would argue, especially medical articles) be written by people who are truly knowledgeable and can cast the article into an objective description of the entity at hand. Otherwise biases creep in (as well as non-professional-quality writing). I am not a physician, but a humanities scholar, and publish articles in peer-reviewed scholarly journals. Students often turn to Wikipedia (though we tend to warn them against it). But one should have some confidence in the articles presented in this venue. And everything needs proper citation. Jswack (talk) 05:25, 28 April 2010 (UTC)

19:02, 8 June 2010 (UTC)Mprewitt007 (talk) I agree, but unfortuantely, most medical professionals don't bother to come to wiki, it is the layman's place to research. I got permission from Wehby & O'Holleran to post their article, as they were the surgeons that did the 4 surgeries in my family. I figured coming direct from a surgeon makes it pretty direct and factual. The problem on some of these 'disorders' is that doctors don't seem to have time to research them and apply. I have recently had my sister in law, go to a surgeon who said she doesn't have this after being told by 2 different doctors that they think she does.. Now here is the kicker, he never did an MRI or any physical exam, he just went off her medical records and didn't look at the MRI or back X-Rays and Sonograms.. when you have people like that in the profession, it isn't a good thing. Unfortunately, he is sticking to his diagnosis and she is having to go to a different surgeon, which is sad since these guys are supposed to be top of their game. So all that to say that sometimes, we as the layman can know more about some afflictions than a physician or medical researcher, so while in pricipal I agree with you, as everything, there are going to be exceptions and thus we have to be flexible on Wiki to allow good information in and to have it evaluated by many...