Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Nina's website has lots of good info http://www.btinternet.com/~tetheredcordresources/ Also, there is a good video on tight filum tethered cord on the chiari institute's website -- http://www.chiariinstitute.com/Videos/index.html Dee To: tetheredspinalcord From: pdk92078@... Date: Sat, 29 Nov 2008 10:12:15 -0800 Subject: Re: Need info Hi everyone, Can anyone gime me some good rescources to look up TSC I need to do a presentation for my Health class in college. Thanks, Keiffer Subject: Re: Update, Verticle MRI To: tetheredspinalcord@ yahoogroups. com Date: Friday, November 28, 2008, 4:17 AM I appreciate the comments. I have had a hard time describing them to others as well. It was my gp that first said it sounded like spinal tap headaches.. Of course I was 55 years old when he said. I think I figured out that I get about four different kinds of headaches. What I would describe as my SB headaches are located on the top rear of my head. I picture the cap the Jewish people ware and that's pretty much the location. My apology to our Jewish friends for not know what the caps called. I had heard about the vertical MRI a couple of years ago. Sometimes a horizontal wont show a problem with back, particularly if the person back problems occur when they are standing up. In there brochure that's the application they showed. I wouldn't say it's easy by any standard. Sitting still for 20 min at a time with short break, for someone who hardly ever sits still was difficult. My back did start hurting and I wish I had taken a little more pain medicine before I started. I did take it at the half way point. The machine is open and I was able to watch TV on a big screen the whole time. They say it's not as noisy, but that might be from the fact is more open. My opinion is, it's still noisy. I put the headphones on for the second go round. I sat down, with my back toward the MRI. The tech fasten a set belt, just to make sure you don't fall asleep and fall out. The chair moves back and up into the MRI. It's like being in very narrow hallway. The tech placed a bar across the front for my arms to rest on. The second go round I had a padded bar for my forehead. I wish I had used one on the first go round. It allowed me relax a little more. They did both a lower and upper spine. This is the fist time my upper spine had been MRIed. By the way that part was okay.. I was glad to find this out. I think it took 20 to 30 minutes for each session. As I said, I would not say it was " easier " , but is sure can be an option if a person as problems with the horizontal. My problem is laying on my back. As I stated I get headaches and other problems. It took almost 3 hr's before I could sit up without extreme pain and the feeling I was going out, with my last MRI, which I would have if I didn't lay right back down. I did not want to go through that again. I don't think there are lot these machines around yet. But I would guess major cities have them available. Woody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Thanks for your help Sent from my iPhone Nina's website has lots of good info http://www.btinternet.com/~tetheredcordresources/ Also, there is a good video on tight filum tethered cord on the chiari institute's website -- http://www.chiariinstitute.com/Videos/index.html Dee To: tetheredspinalcord From: pdk92078@... Date: Sat, 29 Nov 2008 10:12:15 -0800 Subject: Re: Need info Hi everyone, Can anyone gime me some good rescources to look up TSC I need to do a presentation for my Health class in college. Thanks, Keiffer Subject: Re: Update, Verticle MRI To: tetheredspinalcord@ yahoogroups. com Date: Friday, November 28, 2008, 4:17 AM I appreciate the comments. I have had a hard time describing them to others as well. It was my gp that first said it sounded like spinal tap headaches.. Of course I was 55 years old when he said. I think I figured out that I get about four different kinds of headaches. What I would describe as my SB headaches are located on the top rear of my head. I picture the cap the Jewish people ware and that's pretty much the location. My apology to our Jewish friends for not know what the caps called. I had heard about the vertical MRI a couple of years ago. Sometimes a horizontal wont show a problem with back, particularly if the person back problems occur when they are standing up. In there brochure that's the application they showed. I wouldn't say it's easy by any standard. Sitting still for 20 min at a time with short break, for someone who hardly ever sits still was difficult. My back did start hurting and I wish I had taken a little more pain medicine before I started. I did take it at the half way point. The machine is open and I was able to watch TV on a big screen the whole time. They say it's not as noisy, but that might be from the fact is more open. My opinion is, it's still noisy. I put the headphones on for the second go round. I sat down, with my back toward the MRI. The tech fasten a set belt, just to make sure you don't fall asleep and fall out. The chair moves back and up into the MRI. It's like being in very narrow hallway. The tech placed a bar across the front for my arms to rest on. The second go round I had a padded bar for my forehead. I wish I had used one on the first go round. It allowed me relax a little more. They did both a lower and upper spine. This is the fist time my upper spine had been MRIed. By the way that part was okay.. I was glad to find this out. I think it took 20 to 30 minutes for each session. As I said, I would not say it was " easier " , but is sure can be an option if a person as problems with the horizontal. My problem is laying on my back. As I stated I get headaches and other problems. It took almost 3 hr's before I could sit up without extreme pain and the feeling I was going out, with my last MRI, which I would have if I didn't lay right back down. I did not want to go through that again. I don't think there are lot these machines around yet. But I would guess major cities have them available. Woody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Lots of info just googling TCS...cant remember if anyone suggested www.chiaritimes.com that is Dr. Oro's blog (I think)...What is your paper focusing on? The physiology of TCS or the effects? I have a lot of info .....somewhere.....that I will be glad to share with you. Most of my stuff is on the effects though. The physiology is so different from person to person depending on if lipo is present, split cord etc. Give us an update and let us know what you need or if you got enough info for your paper. Thanks, Subject: Re: Need info To: tetheredspinalcord Date: Monday, December 1, 2008, 2:39 PM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 For my tethered cord paper I am focusing on what tethered cord is, what are the symptoms or causes, and what treatments are avaliable. Thanks From: Amy <amyindemand@ yahoo.com> Subject: Re: Need info To: tetheredspinalcord@ yahoogroups. com Date: Monday, December 1, 2008, 2:39 PM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 I would love to read the paper when u get it done. Good luck to you finding all your research! Sent from my Verizon Wireless BlackBerry Re: Need info To: tetheredspinalcord@ yahoogroups. com Date: Monday, December 1, 2008, 2:39 PM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 looking for information on tethered spinal cord. I had an MRI about two months ago and was told I had a tethered spinal cord with the conus medullis at the L4 level. The report stated that it was a birth defect and no other abnormalities were noted. My Doctor has basically blown me off stating that it is probably my weight causing all the pain that I am having. I am very frustrated and can't seem to get any relief. Could this tethered cord be causing all my pain or is it possible I am just crazy. My Doctor acts like my pain is not real and at this point I am very frustrated anyone else going through this? Subject: Re: Need info To: tetheredspinalcord Date: Monday, December 1, 2008, 9:39 AM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Are you seeing a neurosurgeon? Anne _____ From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of Wolfe Sent: Tuesday, December 02, 2008 4:17 PM To: tetheredspinalcord Subject: Re: Re: Need info looking for information on tethered spinal cord. I had an MRI about two months ago and was told I had a tethered spinal cord with the conus medullis at the L4 level. The report stated that it was a birth defect and no other abnormalities were noted. My Doctor has basically blown me off stating that it is probably my weight causing all the pain that I am having. I am very frustrated and can't seem to get any relief. Could this tethered cord be causing all my pain or is it possible I am just crazy. My Doctor acts like my pain is not real and at this point I am very frustrated anyone else going through this? From: Amy <amyindemand@ <mailto:amyindemand%40yahoo.com> yahoo.com> Subject: Re: Need info To: tetheredspinalcord@ <mailto:tetheredspinalcord%40yahoogroups.com> yahoogroups.com Date: Monday, December 1, 2008, 9:39 AM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Of course your pain can be caused by the tethered cord. Just because you've had it since birth does not mean it cannot start causing you pain and neurological problems as an adult (that is very common). Ask your doctor to refer you to a neurosurgeon with experience in tethered cord to get a full assessment. If you post where you are someone in this group may be able to give you names of good neuros in your area -- not all neuros have experience with tc as it is a rare condition. If all you are having is pain and no neurological symptoms they may recommend leaving it alone and opt for careful observation and pain management, but you should have it checked out. Dee To: tetheredspinalcord@...: wenrn68@...: Tue, 2 Dec 2008 14:16:54 -0800Subject: Re: Re: Need info looking for information on tethered spinal cord. I had an MRI about two months ago and was told I had a tethered spinal cord with the conus medullis at the L4 level. The report stated that it was a birth defect and no other abnormalities were noted. My Doctor has basically blown me off stating that it is probably my weight causing all the pain that I am having. I am very frustrated and can't seem to get any relief. Could this tethered cord be causing all my pain or is it possible I am just crazy. My Doctor acts like my pain is not real and at this point I am very frustrated anyone else going through this?From: Amy Subject: Re: Need infoTo: tetheredspinalcord@...: Monday, December 1, 2008, 9:39 AMI have some medical/neuro journals on my blog you can link to.amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I am guessing...and hoping...you will have a far better experience with the neurosurgeon...after that, sounds like it is time for a new internist! Good luck...let us know what happens at the 16th appt. Randee In a message dated 12/3/2008 9:49:16 A.M. Eastern Standard Time, wenrn68@... writes: I was so frustrated yesterday with my MD she acted like I was just making all of this up and numerous times made reference to my weight as being culprit to my pain. Being a registered nurse I am very much a patient advocate and yesterday I felt completely alone and abandoned by the people in my own profession. I work 12 hour shifts at the hospital and after work I can barely drive the car home. I do have an appointment with a neurosurgeon on December 16th, and when I told my MD that she stated " well he will not give you narcotics for pain, you better find a better way to deal with your problem. <WBR>I have so many different kinds of pain its hard to describe, sometimes it feels like an electric shock in my lower back and buttocks, other times it is a dull ache with muscle sp What type of pain have you all suffered with and what do you do to relieve yourself. I have also been suffering with bowel incont for several years, thinking it was probably due to childbirth after researching TC I imagine that this is probably the cause. I also have numbness in my little toe most of the time, however the MRI report stated no nerve damage. Could the report be wrong? I am afraid to go to the neuro after seeing my MD yesterday because she made me feel like it was all in my head or because of my weight. Please share your stories and experiences with me. From: Amy <amyindemand@ yahoo.com>Subject: Re: Need infoTo: tetheredspinalcord@ yahoogroups. comDate: Monday, December 1, 2008, 9:39 AMI have some medical/neuro journals on my blog you can link to.amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi[Non- text portions of this message have been removed][Non- text portions of this message have been removed] ____________ _________ _________ _________ _________ _________ _ [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] **************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 I was so frustrated yesterday with my MD she acted like I was just making all of this up and numerous times made reference to my weight as being culprit to my pain. Being a registered nurse I am very much a patient advocate and yesterday I felt completely alone and abandoned by the people in my own profession. I work 12 hour shifts at the hospital and after work I can barely drive the car home. I do have an appointment with a neurosurgeon on December 16th, and when I told my MD that she stated " well he will not give you narcotics for pain, you better find a better way to deal with your problem. I have so many different kinds of pain its hard to describe, sometimes it feels like an electric shock in my lower back and buttocks, other times it is a dull ache with muscle spasms. What type of pain have you all suffered with and what do you do to relieve yourself. I have also been suffering with bowel incont for several years, thinking it was probably due to childbirth after researching TC I imagine that this is probably the cause. I also have numbness in my little toe most of the time, however the MRI report stated no nerve damage. Could the report be wrong? I am afraid to go to the neuro after seeing my MD yesterday because she made me feel like it was all in my head or because of my weight. Please share your stories and experiences with me. From: Amy <amyindemand@ yahoo.com>Subject: Re: Need infoTo: tetheredspinalcord@ yahoogroups. comDate: Monday, December 1, 2008, 9:39 AMI have some medical/neuro journals on my blog you can link to.amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi[Non- text portions of this message have been removed][Non- text portions of this message have been removed] ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 , As long as your neuro is experienced in tc you should have a better experience at your next appt. All your symptoms can be caused by tc, but also back pain can have many other causes, some not being very serious. I have had chronic low back and leg pain half my life and now have nerve damage down my left leg. I sometimes get a little numb feeling in my toes but not too bad. My legs are always really tight and ache. Luckily my bowels and bladder are ok. TC can cause the numbness you are experiencing for sure, as well as the bowel problems. Your MD obviously knows very little about TC which is not unusual. Most of us have had to educate our MDs on this condition as you may be the only patient they have ever had with it (I know all my health professionals with exception to the neuros have never had a TC patient). Also, you mention childbirth... I believe it is quite common for adults with TC to start experiencing increased symptoms after childbirth. I also have other low back issues so it is not clear what the TC causes me and what the other stuff causes (spondolythesis, degeneration, disk bulges..). For pain management I do massage, physiotherapy, and am currently doing low level laser therapy. I also am very limited in my activity... I would not make it 15 minutes in a physical job. I am 8 months post-up from tc release (tight filum terminale) and still recovering. I worked really hard getting my core strength up for a year before surgery but am still finding it a long recovery. I am 44 yrs old. Dee To: tetheredspinalcord From: wenrn68@... Date: Wed, 3 Dec 2008 06:48:41 -0800 Subject: RE: Re: Need info I was so frustrated yesterday with my MD she acted like I was just making all of this up and numerous times made reference to my weight as being culprit to my pain. Being a registered nurse I am very much a patient advocate and yesterday I felt completely alone and abandoned by the people in my own profession. I work 12 hour shifts at the hospital and after work I can barely drive the car home. I do have an appointment with a neurosurgeon on December 16th, and when I told my MD that she stated " well he will not give you narcotics for pain, you better find a better way to deal with your problem. I have so many different kinds of pain its hard to describe, sometimes it feels like an electric shock in my lower back and buttocks, other times it is a dull ache with muscle spasms. What type of pain have you all suffered with and what do you do to relieve yourself. I have also been suffering with bowel incont for several years, thinking it was probably due to childbirth after researching TC I imagine that this is probably the cause. I also have numbness in my little toe most of the time, however the MRI report stated no nerve damage. Could the report be wrong? I am afraid to go to the neuro after seeing my MD yesterday because she made me feel like it was all in my head or because of my weight. Please share your stories and experiences with me. From: Amy <amyindemand@ yahoo.com>Subject: Re: Need infoTo: tetheredspinalcord@ yahoogroups. comDate: Monday, December 1, 2008, 9:39 AMI have some medical/neuro journals on my blog you can link to.amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi[Non- text portions of this message have been removed][Non- text portions of this message have been removed] ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 , I am sorry to hear that you have TC. But rest assured you are not crazy. TC can and does cause excruciating and debilitating pain. Also know that it is a rare and misunderstood condition and until you see a doc who is knowledgeable about it, you will be fighting an uphill battle of misdiagnoses and inadequate treatment. If you are tethered at L4 you are grossly stretched which is causing nerve damage and pain. It is essential that you become your own patient advocate and seek out a Neurosurgeon who specializes in TC. It is a very delicate procedure and cannot be left to the hands of an experienced doc. Please state which state you live in and those in your area can share the names of their docs. I wish you all the best. This can be a long and hard road but...after my surgery (was diagnosed at age 36) I did get tremendous pain relief and was able to return to work for several years.. So...believe in yourself and go find a doc who will listen and recognize your condition for what it truly is. Many Blessings, From: Amy <amyindemand@ yahoo.com> Subject: Re: Need info To: tetheredspinalcord@ yahoogroups. com Date: Monday, December 1, 2008, 9:39 AM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 , .....big sigh....your doc is like so many others...ignorant of the condition and too proud to admit it, rather they make you feel like it is all in your mind and that you are just too weak to deal with it...I am so sorry. Many if not all of us have had this very same experience, many times actually...it is so frustrating that I cannot even put it into words. I totally understand your feelings of abandonment by your profession as I too am an RN (well, I still have a license but have been unable to work since 2005) It is understandable that all docs dont know about this condition...it is incomprehensible that they would not either one, admit their lack of knowledge and refer to a specialist or two, admit their lack of knowledge and do research to educate themselves so they can be a good doctor to you. We have all had to educate ourselves on TC. Many of us were diagnosed as adults, so by that time you have already sustained years of nerve damage that is usually irreversible. Yes, I experience shooting, stabbing, poking, wasp stinging, bug crawling, iced feeling, burnt feeling, burning, aching, muscle spasms, leg weakness...not like when they push against your foot, more like a sudden give way. I have bowel and bladder issues. Decreased sensation in my saddle area, sexual dysfunction. Decreased sensation and or numbness in areas, especially my little toe and the outer parts of my feet. Neck, thoracic, lumbar, sacral, coccyxgeal, hip, leg, knee and foot pain. Neuropathy which used to be only in my legs but now has moved up to my arms and trunk as well. Deep nerve pain that drills into my brain and makes me feel like I cannot make it another day, but I do, we do. Many if not most of us experience these same things, it is part of TC. Go into surgery with a positive outlook but do not expect it to fix anything that is currently going on. In my case I got wonderful pain relief and was able to go back to work but sometimes the surgery only prevents further damage, doesnt fix what is already damaged. You will need to find someone VERY experienced so they can not only do your surgery but support you with medications. Although I was a nurse for 14 years, personally I was actually very anti-med. It took me a long time before I would take anything, but I got to the point where I was not going to make it another day. I also have refused narcs up until now because in order for them to work on the nerve pain you have to take a lot of them. I wasnt willing to do that but may have to reconsider as my pain gets worse and I get more tired. I am currently on 2400mg of Neurontin daily, which does help with the superficial neuropathy and something to help me sleep because otherwise I toss and turn all night. There is more but this is getting long and I am not trying to overwhelm you, just letting you know that there are others out there like you and that you are not alone. So, your years of nursing have trained you how to be a patient advocate...now you're the patient, advocate. Feel free to ask about any questions, even personal ones, most of us aren't shy. Glad you found us in OK From: Amy <amyindemand@ yahoo.com>Subject: Re: Need infoTo: tetheredspinalcord@ yahoogroups. comDate: Monday, December 1, 2008, 9:39 AMI have some medical/neuro journals on my blog you can link to.amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi[Non- text portions of this message have been removed][Non- text portions of this message have been removed] ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Can anyone give me a hood laymens term meaning of TSC. Sent from my iPhone I've had TSC since birth and I guess in some ways I lucked out as my pediatrician immediately reffered me to the ped nsg I saw from age 3- 18 (15 years.) I also grew up in a small town with an MD who practiced Family Medicine -- and was patient, kind and ever so willing to do the research on TSC in order to better help me. I have run into the " brick wall " several times yet this occured in college and in adulthood. I'm not sure who said it best, perhaps it was -- but you really do have to take your medical care " by the reins " and advocate for yourself. This is not a condition that is well known or researched and thus being said -- you CANNOT count on the medical community at large to be familiar with it. Yes, there are doctors, PT's and other practionners out there who are " well educated and versed in TSC " but they are unfortunately far and few between. After reading your latest message , I felt the anger build -- at how you were treated -- and by your own doctor no less. SHAME ON HER! She had no right to counsel you like that. None at all -- except to say it stemmed from ignorance. I say " fire her " and search for someone who while " novice to TC " is willing to go the extra mile & help you -- treat you to the 'best' of their ability and defer to others when needed. Sorry, I have to stop now as your e-mail " pushed a button " " trigger " and I'd best leave it at that for now. I hope your Nsg appointment on the 16th goes much better than your initial experience with your own MD. Don't be afraid to ask questions. Bring someone with you who can take notes -- leaving you free to listen, ask questions and find out more. It's okay to let your Nsg know you've had difficulty finding a GP who is knowledgable with TC - could you refer me to someone else? Good luck. Keep your chin up .. and come back as often as you need to. We're here to listen. > > From: Amy <amyindemand@ yahoo.com> > Subject: Re: Need info > To: tetheredspinalcord@ yahoogroups. com > Date: Monday, December 1, 2008, 9:39 AM > > I have some medical/neuro journals on my blog you can link to. > amylynnjenkins. blogspot. com > > Amy L. > " You must be the change you wish to see in the world " ~Gandhi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Bascially, your spinal cord is supposed to be free floating....like a bungie cord. In TSC the cord is tied down, either stretched too far down or attached at the side and is placing tension on the spinal nerves which cause the pain and neurological symptoms such as bowel and bladder problems, neuropathy etc. I've had TSC since birth and I guess in some ways I lucked out as my pediatrician immediately reffered me to the ped nsg I saw from age 3- 18 (15 years.) I also grew up in a small town with an MD who practiced Family Medicine -- and was patient, kind and ever so willing to do the research on TSC in order to better help me. I have run into the " brick wall " several times yet this occured in college and in adulthood. I'm not sure who said it best, perhaps it was -- but you really do have to take your medical care " by the reins " and advocate for yourself. This is not a condition that is well known or researched and thus being said -- you CANNOT count on the medical community at large to be familiar with it. Yes, there are doctors, PT's and other practionners out there who are " well educated and versed in TSC " but they are unfortunately far and few between. After reading your latest message , I felt the anger build -- at how you were treated -- and by your own doctor no less. SHAME ON HER! She had no right to counsel you like that. None at all -- except to say it stemmed from ignorance. I say " fire her " and search for someone who while " novice to TC " is willing to go the extra mile & help you -- treat you to the 'best' of their ability and defer to others when needed. Sorry, I have to stop now as your e-mail " pushed a button " " trigger " and I'd best leave it at that for now. I hope your Nsg appointment on the 16th goes much better than your initial experience with your own MD. Don't be afraid to ask questions. Bring someone with you who can take notes -- leaving you free to listen, ask questions and find out more. It's okay to let your Nsg know you've had difficulty finding a GP who is knowledgable with TC - could you refer me to someone else? Good luck. Keep your chin up .. and come back as often as you need to. We're here to listen. > > From: Amy <amyindemand@ yahoo.com> > Subject: Re: Need info > To: tetheredspinalcord@ yahoogroups. com > Date: Monday, December 1, 2008, 9:39 AM > > I have some medical/neuro journals on my blog you can link to. > amylynnjenkins. blogspot. com > > Amy L. > " You must be the change you wish to see in the world " ~Gandhi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 , thank you for your words of encouragement. It is so frustrating to be in this much pain and be treated like a crazy person. I am from port, PA a small town in central PA. My appointment is with Dr. Rajuub on December 16. I was told he is a very good neurosurgeon, just lacks in the bedside manner. I work as a registered nurse at the same hospital so hopefully he will have more understanding and compassion than my general practioner did. Thank you to everyone who is part of this group, its just nice to have people to communicate with who will listen and understand. If I do need to have surgery, what should I expect and how long is the recovery time? If it is a laminectomy will I be able to go back to work within a few weeks. I work as an OB nurse so I am basically clueless to the neuro stuff. Thank you for listening. From: Amy <amyindemand@ yahoo.com> Subject: Re: Need info To: tetheredspinalcord@ yahoogroups. com Date: Monday, December 1, 2008, 9:39 AM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 , you are so very welcome, I am sorry that you are having to go through this. I think it is hard when you are a " health care professional " for years, people putting their lives and their childrens in your hands and then suddenly we become crazy? It is insulting is what it is. I know that I always took my patients pain needs VERY seriously and I would never ever want someone to go through what I go through. Not trying to play " victim " here..many have it much worse than I do and I am very grateful for what I have but...really, this pain is just too much sometimes. As for your surgery.....of course we are all different as well as surgeons technique but I had a bi-level laminectomy with mine. I was in the hospital for a week and then for a week or so I had a bedside commode at home. I had a spinal leak which caused really really bad headaches for two weeks.....maybe I should tell you why so maybe you can prevent it. This was the first TC release that my NS did or that had ever been done in that hospital. The nurses were untrained in how to care for me. They treated me like a disc patient and were demanding that they pull my cath right away (I didnt let them), trying to get me to walk and making me use the trapeze thingy. Of course I didnt know either so I did what they said. WRONG. Most experience NS's make you lay either supine or prone (not sure why the difference) for at least 24 hours...some more than that....to prevent pressure on the dura so it doesnt develop a leak. Well, we all live and learn. Anyway, I dont think I was able to return to work for about 4 months and then it was 4 hours, then 6, 8, 10, 12. Had to work up slowly. I was working Dialysis at the time...most of my career I worked Neonatal Intensive Care. I miss the babies So, I wouldn't expect to return to work in a few weeks dear. Especially in OB nursing, there is a lot of running and lifting and pushing etc. Some on here had PT after their surgeries, I didn't, I was just told if it hurts dont do it. Now, let me talk about another thing here. I am sure that your hospital offers Long Term Disability Insurance. Don't buy it. Absolutely purchase LTD but get it privately not through your employer. This is why...when you get it through your employer the insurance company is covered by ERISA laws...which basically means that you cannot sue them if they drop you unethically etc. You can appeal but you cant sue for damages. This makes it almost impossible to find a lawyer that will help you fight it ( I am fighting this battle now) If it is purchased privately then ERISA doesnt cover their greedy butts. Obviously everyone needs LTD insurance, especially if they have TC. Now, I am just thinking that LTD through employer is group so they cant exclude you but privately may be harder to get especially with a TC dx....hmmmm...well, I dont know, I only know that I am pretty much screwed until I get social security. Ok, off my soapbox now....lol. Please be sure that your NS is not only a good NS but is very experience with TC. Make sure he (and his staff) have done lots of them, if not find one who has. Take your time and do not push yourself to get back to work, this may be your one chance to help your back enough to return to work. One more insult..one bad lift, one slip and fall etc could end your career as it did mine....well, I fell off a horse but still....take your time and when you do return to work, protect your back well (get help with lifts from now on and forever). Let us know what the NS says... From: Amy <amyindemand@ yahoo.com> Subject: Re: Need info To: tetheredspinalcord@ yahoogroups. com Date: Monday, December 1, 2008, 9:39 AM I have some medical/neuro journals on my blog you can link to. amylynnjenkins. blogspot. com Amy L. " You must be the change you wish to see in the world " ~Gandhi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Your TC definitely could be the source of your pain. When my pain first started, I was looking for answers. I didn't know I had TC at the time - just SBO. I saw an ortho that my PCP referred me to. He basically told me that my weight was the source of all my pain. He told me to get a copy of the Atkins diet and to see him again in 6 months. I had never been so offended in my life. While I had never been skinny (140 lb and 5' 5 " ) and I had gained some recent weight from a medicine that I took that put 40 lbs on in 6 months, I was still heavy, but not so heavy that you would look at me and say - wow - no wonder your back hurts. At my heaviest, I was 180. By the time I saw this MD, I was about 160. Either way, I knew it was not my weight. I always wanted to go back to his office after I got my correct diagnosis of TC and diastematomyelia and ask him if he was still going to stick to his story. Or would he say it was my " weight " that was caused these defects. I swear I'll never understand some MDs and their rationale. The point is that you just have to keep your head up and find another MD. Since you know you have TC, you can find someone with experience dealing with TC. Jenn > From: tetheredspinalcord <tetheredspinalcord%40yahoogroups.com> > [mailto:tetheredspinalcord <tetheredspinalcord%40yahoogroups.com>\ ] > On Behalf Of Wolfe > Sent: Tuesday, December 02, 2008 4:17 PM > To: tetheredspinalcord <tetheredspinalcord%40yahoogroups.com> > Subject: Re: Re: Need info > > looking for information on tethered spinal cord. I had an MRI about two > months ago and was told I had a tethered spinal cord with the conus > medullis > at the L4 level. The report stated that it was a birth defect and no other > abnormalities were noted. My Doctor has basically blown me off stating that > it is probably my weight causing all the pain that I am having. I am very > frustrated and can't seem to get any relief. Could this tethered cord be > causing all my pain or is it possible I am just crazy. My Doctor acts like > my pain is not real and at this point I am very frustrated anyone else > going > through this? > > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Jenn, thank you so much because I am starting to feel like everyone thinks it is just my weight. My mother and my significant other have also been harping on the weight issue and yes I am much heavier than I should be but I have had back pain for many years, however at that time I was able to control the pain. Maybe the weight has made it more intense but the more I hurt the less active I have become. I would also like to know it you would experience pain in different areas like in the lower back, upper back and around the sides under your ribs, into the neck and arms, and into the buttocks and down your legs into your feet. Thank you again for your support. Subject: Re: Re: Need info To: tetheredspinalcord Date: Tuesday, December 9, 2008, 11:59 PM Your TC definitely could be the source of your pain. When my pain first started, I was looking for answers. I didn't know I had TC at the time - just SBO. I saw an ortho that my PCP referred me to. He basically told me that my weight was the source of all my pain. He told me to get a copy of the Atkins diet and to see him again in 6 months. I had never been so offended in my life. While I had never been skinny (140 lb and 5' 5 " ) and I had gained some recent weight from a medicine that I took that put 40 lbs on in 6 months, I was still heavy, but not so heavy that you would look at me and say - wow - no wonder your back hurts. At my heaviest, I was 180. By the time I saw this MD, I was about 160. Either way, I knew it was not my weight. I always wanted to go back to his office after I got my correct diagnosis of TC and diastematomyelia and ask him if he was still going to stick to his story. Or would he say it was my " weight " that was caused these defects. I swear I'll never understand some MDs and their rationale. The point is that you just have to keep your head up and find another MD. Since you know you have TC, you can find someone with experience dealing with TC. Jenn > From: tetheredspinalcord@ yahoogroups. com<tetheredspinalcord %40yahoogroups. com> > [mailto:tetheredspinalcord@ yahoogroups. com<tetheredspinalcord %40yahoogroups. com>] > On Behalf Of Wolfe > Sent: Tuesday, December 02, 2008 4:17 PM > To: tetheredspinalcord@ yahoogroups. com<tetheredspinalcord %40yahoogroups. com> > Subject: Re: Re: Need info > > looking for information on tethered spinal cord. I had an MRI about two > months ago and was told I had a tethered spinal cord with the conus > medullis > at the L4 level. The report stated that it was a birth defect and no other > abnormalities were noted. My Doctor has basically blown me off stating that > it is probably my weight causing all the pain that I am having. I am very > frustrated and can't seem to get any relief. Could this tethered cord be > causing all my pain or is it possible I am just crazy. My Doctor acts like > my pain is not real and at this point I am very frustrated anyone else > going > through this? > > . > > > Quote Link to comment Share on other sites More sharing options...
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