Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 - hopefully someone will post a good NS for you to see in your area for a second opinion. Please don't give up hope and do seek out a pain specialist if you haven't already -- I know many in this group have had great results with pain meds if you get on the right one. I am getting close to my second year post surgery and on a positive note I can say I am as strong as pre-surgery again and no longer have that horrible aching pain in my legs. I still can't walk far or do a lot of bending, but if I keep those activities to a minimum I can keep my pain levels low. Am still considering a fusion to deal with the rest of my messed up spine. It was really only this last fall that I noticed improvements -- for 1 1/2 yrs after surgery I was way worse. I can now swim a km relatively pain free and attend pilates sessions. I remember feeling hopeless about my pain and it was not as bad as yours, but suddenly things turned a corner for me in the fall. I was pretty diligent with a lot of therapies but will never really know what worked -- laser therapy, nutritional therapy, physio, swimming, massage... Have you had a repeat MRI? When I had mine a year after surgery as my pain levels were not going down nothing really showed up any different from before. ps seems like a lot of our NS lack in the personality department and brush you off if they don't have answers. Dee To: tetheredspinalcord From: ilquackies@... Date: Mon, 11 Jan 2010 06:48:27 -0800 Subject: Re: One year post op Hello , I'm so sorry with what you are going thru your story brought tears to my eyes, I can only imagine what you are going thru and feeling right now, my thoughts and prayers that you find some relief, please start looking for another doctor, someone should be able to help you, I'm sorry... Sharon ________________________________ To: tetheredspinalcord Sent: Mon, January 11, 2010 8:49:14 AM Subject: One year post op Not for the light-hearted. ... The 1 year anniversary of my tethered cord release and correction of my diastematomyelia is tomorow, January 12th. As the day draws closer I'm getting more and more depressed. It was such a horrible experience, and the outcome has not been good for me. I am in so much pain! (Sorry for anyone that may be reading this pre-surgery) I'm trying to stay focused on the positive aspects of it. The surgery probably prevented me from having bowl and bladder issues in the future, and for that I am grateful. But this pain. The almost never ending pain. There has GOT to be someone that can help me reduce it, or at least explain why I am in so much more pain than before the surgery. My NS is an ass and only says that the surgery may have " poked the beehive. " WTF am I supposed to do with that kind of information? I live north of Phoenix. I know somewhere in this Metropolis there has got to be a Pain Specialist, a Physical Therapist, a Neurologist, SOMEONE, anyone that has any experience with spinal cord disorders. But I certainly haven't found them yet. And as tomorrow gets closer I am more tempted to grab our yellow pages, turn to " Doctors " and start with the " A " s until I find someone. I refuse to believe this is it for me. It just can't be. Phew, thanks for letting me vent. I'm so glad you are all here and I have a place to get my frustrations out to people that understand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Oh ! I'm so very very sorry! As you know, I understand and have been where you are. Don't give up! Just keep looking and you will find someone that can help...plus, well it keeps you busy so you are not just drowning in the pain. Yes, you would think there would have to be someone there as big as Phoenix is, but Thanks to the internet you are not restricted to Phoenix.    My heart and hope goes out to you, Subject: One year post op To: tetheredspinalcord Date: Monday, January 11, 2010, 7:49 AM  Not for the light-hearted. ... The 1 year anniversary of my tethered cord release and correction of my diastematomyelia is tomorow, January 12th. As the day draws closer I'm getting more and more depressed. It was such a horrible experience, and the outcome has not been good for me. I am in so much pain! (Sorry for anyone that may be reading this pre-surgery) I'm trying to stay focused on the positive aspects of it. The surgery probably prevented me from having bowl and bladder issues in the future, and for that I am grateful. But this pain. The almost never ending pain. There has GOT to be someone that can help me reduce it, or at least explain why I am in so much more pain than before the surgery. My NS is an ass and only says that the surgery may have " poked the beehive. " WTF am I supposed to do with that kind of information? I live north of Phoenix. I know somewhere in this Metropolis there has got to be a Pain Specialist, a Physical Therapist, a Neurologist, SOMEONE, anyone that has any experience with spinal cord disorders. But I certainly haven't found them yet. And as tomorrow gets closer I am more tempted to grab our yellow pages, turn to " Doctors " and start with the " A " s until I find someone. I refuse to believe this is it for me. It just can't be. Phew, thanks for letting me vent. I'm so glad you are all here and I have a place to get my frustrations out to people that understand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Oh my gosh, ...I would be totally sick and tired too. this is just awful. they may feel they know it is nerve pain and they are limited to tricking the nerves ie tens or treating the area in the brain that register the pain signals..the meds. I am surprised and disheartened for you that their is no one familiar with spinal cord disorders!! The only other thing I can think of is to look for a physical medicine specialist/physiatrist who treat spinal cord injuries frequently. Not much help but please keep on looking for the answer. The pain clinic at which I worked also did acupuncture but I think it was mostly for migraines perhaps? Randee In a message dated 1/12/2010 7:44:24 A.M. Central Standard Time, kbhansel@... writes: Randee, I've been through 3 pain specialists in the last two years. I can't seem to find one with experience spinal cord disorders or any kind, let alone our condition. I've been through all kinds of medicines and am currently taking percoset, oxycontin and neurontin (which is no way to live either, especially since they don't seem to help). I have definatley built up a resistance to the narcotics. Lyrica and Cymbalta make me very nausous. I have a tens unit but its ineffective. The biggest problem I have with the Pain Specialists is they don't seem to want to get to the root of the problem. They just try and treat the pain. It seems to me that if someone could help me figure out WHY there is pain then the Pain Specialist would be able to treat it better. In addition to the TSC surgery I have also had numerous SI joint inections, facet joint inections, Medial Branch block injections, Caudal Epidurals and a Radiofrequency nerve ablation. I'm sick and tired of them sticking needles in me without knowing exactly what they are dealing with! --- In _tetheredspinalcord@tetheredspintet_ (mailto:tetheredspinalcord ) , Randeejae@.., Ra > > Oh ..I hate that you have had this sort of outcome. and your NS is > an ass if he hasn't referred you to anyone to try to help you with your > pain. If no one in the group has names for you, you can call your local > hospital and ask for their pain specialists, or their dept of physical medicine, > or their dept of anesthesiology and ask if anyone specializes in chronic > pain treatment. What medicines have you tried? Have you been on an > antidepressant (for the pain relieving benefits) or drugs such as Lyrica? Have > they suggested a tens unit? There is lots to try. Randee > > > In a message dated 1/11/2010 7:54:48 A.M. Central Standard Time, > kbhansel@... writes: > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Randee, I've been through 3 pain specialists in the last two years. I can't seem to find one with experience spinal cord disorders or any kind, let alone our condition. I've been through all kinds of medicines and am currently taking percoset, oxycontin and neurontin (which is no way to live either, especially since they don't seem to help). I have definatley built up a resistance to the narcotics. Lyrica and Cymbalta make me very nausous. I have a tens unit but its ineffective. The biggest problem I have with the Pain Specialists is they don't seem to want to get to the root of the problem. They just try and treat the pain. It seems to me that if someone could help me figure out WHY there is pain then the Pain Specialist would be able to treat it better. In addition to the TSC surgery I have also had numerous SI joint inections, facet joint inections, Medial Branch block injections, Caudal Epidurals and a Radiofrequency nerve ablation. I'm sick and tired of them sticking needles in me without knowing exactly what they are dealing with! > > Oh ..I hate that you have had this sort of outcome. and your NS is > an ass if he hasn't referred you to anyone to try to help you with your > pain. If no one in the group has names for you, you can call your local > hospital and ask for their pain specialists, or their dept of physical medicine, > or their dept of anesthesiology and ask if anyone specializes in chronic > pain treatment. What medicines have you tried? Have you been on an > antidepressant (for the pain relieving benefits) or drugs such as Lyrica? Have > they suggested a tens unit? There is lots to try. Randee > > > In a message dated 1/11/2010 7:54:48 A.M. Central Standard Time, > kbhansel@... writes: > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Sharon, Thanks so much for your thoughts and prayers! I am a firm believer that they help I'm so sorry to have made you cry > > Hello , > > I'm so sorry with what you are going thru your story brought tears to my eyes, I can only imagine what you are going thru and feeling right now, my thoughts and prayers that you find some relief, please start looking for another doctor, someone should be able to help you, I'm sorry... > > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Dee, You are my hope! If you got better after a year and a half maybe I only have another 6 months to go Like you I am still trying everything possible. Besides all the procedures I posted in the message above I forgot to mention I am also going to PT, getting massages, etc etc. I feel so sorry that you are possibly facing another surgery. I can't imagine that I would ever be able to do it again. I was basically in a medically induced coma for 48 hours after my surgery because they could not control the pain. And the little I remember about the few days after that, I wish I didn't. I have had a follow up MRI but it didn't show anything. But then again, I have an almost uncanny way of attracting idiot doctors, so who knows what it showed. My original MRI report stated that I had a Diastematomyelia, but no sign of tetherd cord. Huh? Diastem is a form of TC! And personally, to me it looked as if the conus ended a little further down then the pre-op MRI. That doesn't seem likely, but it sure is what it looked like to me on the latest films. Thanks so much for your reply. You really do give me hope > > > - hopefully someone will post a good NS for you to see in your area for a second opinion. Please don't give up hope and do seek out a pain specialist if you haven't already -- I know many in this group have had great results with pain meds if you get on the right one. > > I am getting close to my second year post surgery and on a positive note I can say I am as strong as pre-surgery again and no longer have that horrible aching pain in my legs. I still can't walk far or do a lot of bending, but if I keep those activities to a minimum I can keep my pain levels low. Am still considering a fusion to deal with the rest of my messed up spine. > > It was really only this last fall that I noticed improvements -- for 1 1/2 yrs after surgery I was way worse. I can now swim a km relatively pain free and attend pilates sessions. I remember feeling hopeless about my pain and it was not as bad as yours, but suddenly things turned a corner for me in the fall. I was pretty diligent with a lot of therapies but will never really know what worked -- laser therapy, nutritional therapy, physio, swimming, massage... > > Have you had a repeat MRI? When I had mine a year after surgery as my pain levels were not going down nothing really showed up any different from before. > > ps seems like a lot of our NS lack in the personality department and brush you off if they don't have answers. > > Dee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 , So good to hear from you! How ar YOU? I hope you are doing good! Yep, absolutely keeping busy keeps my mind off the pain. Its just so damn frustrating! Thanks so much for your thoughts > > Oh ! I'm so very very sorry! As you know, I understand and have been where you are. Don't give up! Just keep looking and you will find someone that can help...plus, well it keeps you busy so you are not just drowning in the pain. Yes, you would think there would have to be someone there as big as Phoenix is, but Thanks to the internet you are not restricted to Phoenix.    My heart and hope goes out to you, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Dear , You may want to try a pain clinic based out of a medical school. The only successes I have had were either doctors who traveled from teaching hospitals and visited locally 1 day a week or drag myself 50 miles either way. But, in any event your NSG should have told you 1st, the surgery unlikely will cure any pain, and it very likely you would have some kind of nerve pain as a result. It may go away. Whether or not it does, you should be comfortable. Ask your NSG's nurse or PA for help finding a good pain clinic. M. > Not for the light-hearted.... > > The 1 year anniversary of my tethered cord release and correction of my diastematomyelia is tomorow, January 12th. As the day draws closer I'm getting more and more depressed. It was such a horrible experience, and the outcome has not been good for me. I am in so much pain! (Sorry for anyone that may be reading this pre-surgery) > > I'm trying to stay focused on the positive aspects of it. The surgery probably prevented me from having bowl and bladder issues in the future, and for that I am grateful. > > But this pain. The almost never ending pain. There has GOT to be someone that can help me reduce it, or at least explain why I am in so much more pain than before the surgery. My NS is an ass and only says that the surgery may have " poked the beehive. " WTF am I supposed to do with that kind of information? I live north of Phoenix. I know somewhere in this Metropolis there has got to be a Pain Specialist, a Physical Therapist, a Neurologist, SOMEONE, anyone that has any experience with spinal cord disorders. But I certainly haven't found them yet. And as tomorrow gets closer I am more tempted to grab our yellow pages, turn to " Doctors " and start with the " A " s until I find someone. I refuse to believe this is it for me. It just can't be. > > Phew, thanks for letting me vent. I'm so glad you are all here and I have a place to get my frustrations out to people that understand. > > > > > > ------------------------------------ > > NOT MEDICAL ADVICE. We Are Not Doctors. > Need help with list?Email Darlene: darlene_self@... or > : hollygolightly1916@... > Quote Link to comment Share on other sites More sharing options...
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