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    Dr. Maine - Occult Tethered Cord Syndrome (TCS) Is it true? What is it?
    findingpeacewithpain posted:

    Hello, I have been diagnosed with a chiari malformation where my cerebellum is 4mm into my spinal column. I have congenital abnormalities in 5 major systems that we have only found out after years of suffering before I have been validated medically. I have had low back pain, leg pain and headaches my whole life but it is unmanageable now.
    The Chiari institute in New York has researched a lot of related conditions with Chiari and have found a large number of people have chronic lumbar pain and/or fibromyalgia type pain. I have had information recently that a tethered cord could be the cause of all my strange symptoms my whole life. The traditional definition and measurements of a tethered cord seem to have been altered a bit but it has been proven that Chiari and Tethered cords do go together in spina bifida patients. If they are not treated in childhod the symptoms can go on uner the radar until patients are debilated.
    The theory behind this tethered cord is something I want to trust and believe but it would help if I had your expertise check the research and see if it is for real.
    I am so desperate that I would do almost anything for relief but I know I can't just keep throwing money at this problem and expect that it will go away. The
    Doctors and their research seem reputable enough but they are also the ones getting the money for the surgery to cut it. If you dont mind seeing his video on the website I would really appreciate it. I have all the bladder, bowel, back pain, leg pain, numb soles and toes of my feet and no releif from the aching (even lying down., is just always nagging and aching below my belly button. My pain is worse and recreated when I am constipated.
    I have a few complications for such an easy diagnosis. I have had a lumbar fusion that has never stopped the hurt and I have degenerative disc disease confirmed. I am 40 and my symptoms have gotten unbareable mostly in the last 3-5 years....even more rapid deterioration in the last 6 months. I am unable to work or be reliable/ healthy / strong enough to be alone with my 2 young adopted boys at times.
    Help. Please. No one can tell me why this is happening or help me deal with it. Altough this all sounds too good to be true I do not want to be an idiot just believing every sales man that selling something. If there is something about the TCS then I will explore it. Coming from Canada it will be expensive and I have been throwing a lot of money at this for years.
    Welcome and thanks. sorry about the length.....
    Michael66049 responded:
    You certainly have multiple problems, findingpeacewitpain. I used to have an intrthecal pumpwhich delivered an antispastic and an analgesic drug to my spinal cord; you might ask a pain management specialist about those. My experience with pumps was not wonderful, and my last one had to be removed because (I believe) the surgeon who installed it botched the job. Since then all my pain management has been done by means of oral meds such as Baclofen, Percocet, and now and then Skelaxin. I also have weekly physical therapy sessions.
    findingpeacewithpain replied to Michael66049's response:
    Thanks for your reply. Yes there seems to be a few things going on at once. I also take pain meds (Oxycodone & Oxydontin). I really don't like the way they make me feel but I have never tried a pump. Hopefully if my spinal cord is indeed tethered they can cut it and take out the scar tissue that has formed at the base and at the beginning. The problem now is who to believe......the Chiari Insitute in New York gains over 20000 if I take their advice and that doesn't seem objective. I want to understand the research and make an informed decision. My doc up here in Canada is useless. I can't afford any of this and I certainly can't afford to do something that makes it worse. Argghhhhh.
    I hope your pain management regime is working for you.
    Today I got a referral to the Vancouver Spinal cord clinic in Vancouver.....the problem is that it is a years waitlist I can't wait that long - I will need a cane or a wheelchair soon. I too go to physio weekly and I walk daily for 1 hour. I guess we all just do our best but I hate being at the mercy of people I don't know or who don't know me. On paper I look like a drug seeking hypocondriac and I have so much self doubt.
    I will keep trying however. Ifeel sorry for my family and ashamed that I can't just put mind over matter.
    Take good care.
    gailb54 replied to findingpeacewithpain's response:
    Hi findingpeacewithpain,

    I've read a couple of your posts lately and just wanted to tell you to hang in there and that I hope you will find the solution to your pain. Recently I've read some other posts that you made and honestly felt so bad at the time that I just couldn't say anything but wanted to tell you that I'm pulling for you. Try not to feel guilty about your family. That's been hard for me, too, but they love you and if it was one of them that was ill, you would just want them to get better.

    I know you know this but there is a limit to mind over matter. A couple of nights ago my brother was telling me to just not "dwell" on the pain just like he didn't dwell on the ringing in his ears. He meant well and has helped me very much recently, but it's not even close to the same! Just don't beat yourself up, because you need your strength to fight this and get better.

    I do hope you find some answers soon.

    Take care,
    annette030 replied to findingpeacewithpain's response:
    Do you also have Spina Bifida? I think I missed that in your previous posts, but you mentioned in this one that TCS and Chiari seem to go together in Spina Bifida patients.

    I would not consent to surgery based on what the place in NY says, I would want a doctor I trusted to also tell me it was necessary, then get a specialist to agree with him.

    Take care, Annette
    findingpeacewithpain replied to gailb54's response:
    Thanks Gail,
    It is hard for family to see us suffering and they want to help us be strong by motivating us to get on with life. I too hear things like "there is always someone worse off than you....and if you were a horse they would have shot you a long time ago..." Funny -it is not.
    I did not know until I started writing on this site how sad and torn up I feel sometimes. I do not feel like that all the time. I am just thankful that there is this place for me that is safe to vent. I try to protect the people that love me. I do not know about you but there major tragedy is what this has done to my marriage. I get so angry that he cannot give me what I need when I need it but it is so complex that he has just shut down. Unless he can step up to the plate and be there for me I am not sure I can take it. That is not fair to him but him pulling away just adds to my stress and makes me feel more isolated. HE is supposed to be my best friend and the one I am supposed to lean on and he aviods me like the plague. I don't blame him I am not very attractive when I am so pathetic. I just want to get better and start being a wife that I can be proud of - right now I am not and it rips me up. He deserves better and so do I. We are so far apart tight now it adds to the hurt.
    Again, sorry about the negativity just unloading I guess. It is fear based thinking I know that. I think I need to reread a book called A Return to LOve by Marrianne Williamson. It has gotten me through times like these before. I recommend it.
    I hope you have a nice weekend. Take good care.
    I think dwelling on your pain (or at least thinking about it) is more healthy that denying it or hiding it cause then we find unhealthy ways to mask it or ignore it that can cause worse living conditions (drugs, gambling, etc..). Dealing with up front and giving it the respect it deserves is a way of sizing it up and dealing with it on your terms not the other way around. I applaud you for your bravery. I myself and glad to hear that you are open about it not running the other way with your head in the sand. Facing it head on and dissecting it is one way to divide and conquer it. Or in our cases at least, finding peace with it. (hence my screen name).....
    Hey, there is another web site I have seen that I will send you the link for. It is really good. It is out of the UK but it is called something like conquer pain.....?
    I'll be thinking of you.
    findingpeacewithpain replied to annette030's response:
    Hi Annette,
    Thanks, good idea about the New York idea. I am just so desperate sometimes I feel like I would do anything.
    No I do not have Spina Bifida. I missed the full blown disease in the womb by minutes. I have been told that Chiari and Tethered cords go along with Spina Bifida but to a great degree. I am lucky I didn't get the rest of the symptoms that go along with it.
    I have been referred to the Spinal Cord Clinic in Van so you are right.......I will get a second opinion from them and compare it to the docs in New York before I do anything. It is just the wait that scares me. My life has been on hold now for about 1 yr. Unable to work, or live comfortably. If I have to wait another year I will go crazy. I hope you are feeling well today.
    Take Care,
    gailb54 replied to findingpeacewithpain's response:
    Hi again Lisa,

    I'm no longer married, but I think one thing that would be hard about being married as a pain patient would be how much men are "fixers" and want to fix things. Then, if they cannot "fix" you it probably is frustrating to them and some men might start to see the pain patient as a failed attempt of fixing something rather than the wonderful soulmate that they said they would stay with "for better or worse" and I can only say that it must hurt terribly to not feel your husband's support and that I hope it will turn around for you guys.

    I've been staying at my brother's house while I had surgery and I watch how his marriage works out so well as a partnership in parenting and in life and wish so much that I still had that. It's hard not to feel supported by someone else in that close way and I sure understand that. I always hold on to things being able to turn around, though. I love stories of redemption. I hope there is a way for you and your husband to find a way back to being best friends. I really do.

    Don't ever feel bad for venting. This is a place where you don't need to apologize for it or for feeling negative and hopefully a place to find some support. I do hope you can find some answers soon. My heart goes out to you and I know how scary it can be. Take good care of yourself.

    annette030 replied to findingpeacewithpain's response:
    I can't remember if I mentioned it to you in the past or not (it is easier to type it again than to go look back through all the posts), but you might have a neuro-radiologist look at your films/scans. They are radiologists that specialize in reading films/scans that are of the brain and spinal cord.

    My husband had one when he had a sub-dural hematoma and he was very helpful and explained things better than the neurosurgeon.

    Take care, Annette
    David Maine, MD responded:
    This sounds like quite a struggle - hopefully you are finding the exchange helpful in terms of support and information. You are correct that tethered cords can be causally related to Chiari malformations. Adult symptoms can present as limb muscle bulk (atrophy) sensory deficit (numbness), and urinary frequency and urgency accompanied by a sense of incomplete emptying and even incontinence. Symptoms are often aggravated by trauma, maneuvers associated with stretching of the spine (flexion), disc herniation, and spinal stenosis. In your particular case the existing lumbar degenerative changes you describe clearly complicates things. Does your MRI clearly show a tethered cord (a low level of the conus medullaris (below L2) and thickened filum terminal.). As adult you would not be in the majority of "cord untethering" patients but it certainly can help with those symptoms outlined above. My concern is your other comorbidities. This is may not help your existing back pain secondary to the degenerative condition and other pain conditions. I think having reasonable expectations for any future therapy is critical. I suggest you have a very candid discussion with your neurosurgeon regarding these issues and your understandable concerns. I would also strongly suggest you seek a second opinion. I hope this helps. Wishing you the best....
    findingpeacewithpain replied to David Maine, MD's response:
    Thanks Dr. Maine for your response. Yes it has been difficult but this exchange makes me feel less isolated. I had a question about one of your comments. You said the untethering might help (which is great) but that you were more concerned with my other comorbidities. Does this mean my other congenital abnormalities? I feel silly asking but i really don't know what you meant.
    It has been suggested that I go to medical genetics to really understand my body better. I have been in touch with The Chiari Institute in New York to get another opinion about the thethered cord idea. I am also going to the UBC Badder Clinic and the Spinal Cord Clinic at VGH.
    I had an ultrasound which showed parapelvic cysts in my solitary right kidney. What does this mean?
    Thanks again.
    annette030 replied to findingpeacewithpain's response:
    "Comorbidities" are whatever else is wrong with you besides this spinal condition. They could be congenital or may have developed later on in your life.

    I have FMS, migraines, DDD, OA, they are all comorbidities.

    Take care, Anentte
    lumbarcrazy responded:
    I was reading your post and it seems we have alot of the same symptons. I was born with tethered cord syndrome they did the surgery in 1988 to untether it> I was 30 at the time but it made it worse. 3 years ago my back locked up and I couldnt move for 8 weeks. I was in a wheel chair didnt think I would ever walk again but it did release enough to where I could walk but the chronic pain got worse. Its in my feet, my toes my ankles, legs....its unbearable. I just had my 3rd cervical fusion. I cant get a doctor to give me a straight answer,,they tell me my pain in within my spinal cord and wont show up on an mri...but they seem to put that on my medical records....I do go to a pain clinic but I need some answers....they cant tell me why my back lockes up and I cant move....I wish you the best
    lumbarcrazy replied to findingpeacewithpain's response:
    I had the was rough after the surgery my back locked up every week....all they would do is put me in the hospital on pain meds until it let go. then for a couple of years it kinda eased off....but wow when it locked up the last going back.....I do good to walk now
    BarbH64 replied to lumbarcrazy's response:
    look up adhesive arachnoiditis. I have had the tethered cord release twice and each time it retethers in less than two years.

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