Guest guest Report post Posted August 16, 2009 I pretty much know how you feel.If it wasnt for this little help site,I would also be alone.I dont think people appreciate just how painful this horrid condition is.I got diagnosed at 11 but received no treatment,Im now 29 and I know 60 year olds that can get about better than me,I feel ancient.I actually went out friday night for the 2nd time in twelve months a I needed to deperatly get out of sitting in this house 24/7,it was a big mistake.I had been able to get about fairly easy until I got home,within 5 minutes,I was in agony,the pain was horrendous,I ended up having to use my crutches around the house,I took to many painkillers and had my TENS machine on and it didnt make 1 iota of difference.It has put me off ever going out again.I had to rock myself to sleep crying & screaming...the worst thing though was having nobody here for me.I am also so p***** off with my local authorities as theyve said I can have a shower fitted for free-but there is a 3 year waiting list!!!! ________________________________ From: red74745 <red74745@...> Scoliosis Treatment Sent: Sunday, August 16, 2009 6:09:50 PM Subject: Re: hello I am fixed income so i can not do much, i just feel alone because i can not find anyone close to my age that going through this, I don't know what else is going to happen to me, i am over 50% so surgery is reality for me and its really scary. > > Hi, > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > Jeanne > > > hello > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 16, 2009 I am so sorry that you are feeling alone. I do understand what you are going through as I did not know anyone else who had scoliosis when I was 17. That's where these chat groups come in handy, you can find people who have dealt with, or are dealing with, the same condition as you. Tell me, what doctor have you seen about your curvature? Is this a scoliosis specialist or a regular orthopedic doctor? It is very important that you find a very good scoliosis specialist as there are many people out there who might give you the wrong advice or treatment. If you don't mind my asking, where are you located? There may be others in this group that you can get in touch with just for the emotional support. Others also may be able to direct you to a good surgeon in your area. Do you have family that can help you through this? Even though they cannot truly understand what this is like, they can be very supportive during this difficult process. Just hang in there, it will be okay. If you'd like to talk over the phone, please feel free to call me at 847-622-6865. Jeanne hello > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 16, 2009 I still can move and sit but hurt to move alot but i don't know what else is going to happen. I don't have TENS Machine i don't know what that is really, i don't need crutches yet. I live upstairs so it takes alot move up and down, just doing physical therapy which is hard at times, also somethings i use to do i can't anymore, which laying on my stomach watching tv , running around i can not do much anymore without pain now. > > > > Hi, > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > Jeanne > > > > > > hello > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 17, 2009 A TENS machine is a small electrical gadget that comes with stick on pads that you place around the area of pain,it sends a small electric current which helps to 'scramble' the pain signals from the brain to the area of pain,I find mine doesnt always help as the pain differs each day,the lump I have growing as a result of no action being taken when I was younger gives pain down the legs and a throbbing evil pain, but the scoliosis also gives as much pain but in a different way which often leaves me exhausted.It is a nightmare when you have been so independant all of your life and then you are faced with being unable to continue, but the key is not to be stubborn,if you need help,ask for it. A lot of simple things can be changed to help with more mundane duties. I hope you find some support in our group All the best with Peace,Light and Blessings ________________________________ From: red74745 <red74745@...> Scoliosis Treatment Sent: Monday, August 17, 2009 3:31:32 AM Subject: Re: hello I still can move and sit but hurt to move alot but i don't know what else is going to happen. I don't have TENS Machine i don't know what that is really, i don't need crutches yet. I live upstairs so it takes alot move up and down, just doing physical therapy which is hard at times, also somethings i use to do i can't anymore, which laying on my stomach watching tv , running around i can not do much anymore without pain now. > > > > Hi, > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > Jeanne > > > > > > hello > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 17, 2009 My regular doctor told me, i have not been look at anyone else yet, i am from Oklahoma, my mom has it but she move better and is less pain i am in. so i don't go to her about it . my doctor don't think its too serious right now, but i honestly don't know right now . > > > > Hi, > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > Jeanne > > > > > > hello > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 17, 2009 Why not turn to your mum?it may help let off steam and make you realise you are not on your own,its nice to have someone who knows exactly how you feel and how miserable you can get with it,even try a new activity together-swimming is a good way of helping to strengthen the muscles and the water takes the weight off while your doing it.One thing all of scoliosis sufferers know and that is most excersise is to painful.I started some gentle pilates (where they use a big inflated rubber ball) which helped a little. Another thing I would recommend as will some of the other people on here is to get some chondroitin which is a vitamin that helps with the joints,also good old cod liver oil.Most of all-and I know its hard-stay positive.Even when we are at our lowest and most pain,always remember there are people a lot worse off,I always see young children and teenagers who are fighting cancer and leukemia and it makes me realise just how lucky I am :-) I have no one to turn to at all.My mum passed away 10 years ago along with most of my family through one thing or another and my dad is very ill and having radiotherapy..I just wish I did have someone Keep smiling Peace,Love & Blessings ________________________________ From: red74745 <red74745@...> Scoliosis Treatment Sent: Monday, August 17, 2009 10:13:12 PM Subject: Re: hello My regular doctor told me, i have not been look at anyone else yet, i am from Oklahoma, my mom has it but she move better and is less pain i am in. so i don't go to her about it . my doctor don't think its too serious right now, but i honestly don't know right now . > > > > Hi, > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > Jeanne > > > > > > hello > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2009 You really do need to see a specialist as they are the only ones qualified to tell you exactly what is going on with your spine. Are you on Medicaid or do you have any insurance at all? Here are a couple website links you can go to for more information that might help you understand your condition. http://www.niams.nih.gov/Health_Info/Scoliosis/default.asp http://www.srs.org/about/contact/ The srs.org has a Find A Specialist link that is helpful in locating a scoliosis specialist in your area. You want to click on that heading and then click on Geographic and Specialty Search. Fill out the information with your info and it will give you the names of doctors nearest to your area. Here are some doctors that my search turned up for you: J. Devlin, MD OSSO Spine Center 3115 SW 89th Street Oklahoma City, OK 73159 Phone: (405) 250-2788 Fax: (405) 692-1632 Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile E. L'Heureux, Jr., MD, FACS Office of E. L'Heureux Jr., MD, FACS 1405 NW 150th Street Edmond, OK 73013-1305 Phone: (405) 844-5222 Fax: (405) 844-2166 Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile Preston J. , MD Warren Clinic Medical Building 6475 S. Yale Avenue, Suite 202 Tulsa, OK 74136 Phone: 918-494-4460 Fax: 918-494-4442 Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions Wienecke, MD Neuroscience Specialist 4120 W. Memorial Road, #300 Oklahoma City, OK 73120 Phone: (405) 748-3300 Fax: (405) 748-2922 Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions H. , MD Oklahoma Sports Science & Ortho 3115 SW 89th, Suite C Oklahoma City, OK 73159 Phone: (405) 424-5630 Fax: (405) 602-8326 Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile I hope this helps you find someone that can tell you what is happening with your spine and how best to treat it. You need to talk to them if you have no insurance as there may be something they can do. Best of Luck, Jeanne hello > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2009 I have Medicare and medicaid and i have to have a referral from the doctor and its have to be very serious, and have to have alot paperwork, and mine is at beginning and its hard going to my mom because her do not hurt as much, and so she don't talk about it , she have more medical issues to worry about. and i don't have ball to exercise on . but on my physical therapy i am learning to strengthen my back muscles. > > > > > > Hi, > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > Jeanne > > > > > > > > > hello > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 19, 2009 Scoliosis IS serious and you need to push your doctor to write you referral to a scoliosis specialist. You must fight for your rights and don't let them tell you they can't write a referral. They sent you to physical therapy, right? Talk to your physical therapist and see what he/she can tell you about getting your doctor to listen to you. Has your doctor done any x-rays? Did he tell you the degree of your curvature? He must give you his information. Keep pushing your doctor, don't give up. Jeanne hello > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 19, 2009 Yeah, my physical therapist keep calling my doctor, and they finally are getting x-rays and another opinion from a specialist. and mine therpist says my curve is at 80% > > > > > > > > Hi, > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > Jeanne > > > > > > > > > > > > hello > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2009 Dear Red hello, I am 44 & when my spine curved 2 80% I had 2 have a total spinal fusion. I really did'nt have a choice cuz it was effecting my breathing & no pain killers were working. They got my spine 2 a 20% after surgery. I was living in Neveda at the time but I had a very good spine care Dr. I did move back 2 Okla. After I recovered from my surgery, which I think was in a yr or 1 1/2 yrs I went back 2 work but within 6 mos the top screws popped lose & I was in alot of pain & had 2 find a dr 2 remove it. I was still in alot of pain so I had 2 quit my job & go on welfare & food stamps 2 help support my son. Within a yr my pain had gotten worse & went 2 the OU Med Center in Okla City & Dr. Puckett removed all of my hardware with a 50% chance of the pain being better. But unfortunetly it has'nt gotten better & I suffer daily even on a high dose pain med. But every1 is different. But u need 2 find a good Dr. I am on Medicaid & Medicare also & I was able 2 get my own Dr. without a referral. Cuz when ur on Medicare u can. I will be praying 4 u. God bless u. > > > > > > > > > > Hi, > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2009 that what scare me deeply, to be more pain than i am before, that having something metal in my back and be on meds that does not help the pain, to be more worse than i am now. > > > > > > > > > > > > Hi, > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 20, 2009 I'm sorry to hear of your experience. I also had trouble with my hardware: my rods broke 2 years after the surgery, and now, a year and a half after my 2 part revision/fusion to sacrum surgery, (I'm fused from T4-S1 now) the surgeon put my iliac screw in so deep, so as to prevent a protrusion, that it severed my iliac nerve. I've been in pain since the surgery and I take a pain cocktail daily so I can function. I go to school, 2 classes, and I take care of my dogs and my mother and sometimes my 10 yr old grandson. I'm 52 but feel 82. I'm soooo tired. I keep going, and I know I'm very fortunate because I bought a house before I was disabled and sold it for a great profit, moved to NM and bought a house where it's nice and sunny; no more snow and cold, but also had to leave most of my family behind. We all have to do what we can to get by. It sounds like you figured it out. Is there any way to be fixed? I'm going to get my screw out and hope for the best. I have to wait for 2 full years, but also was told that the sooner I get it out the better the chance of the nerve healing. I very well might have this pain forever though. I'm not happy about the surgeon doing such a stupid thing, thinking he was doing me a favor. What can we do? We're not asked what we want, they just do what they think is best and we suffer the consequences. ________________________________ From: sccroteau <s.ccroteau@...> Scoliosis Treatment Sent: Thursday, August 20, 2009 3:26:52 PM Subject: Re: hello  Dear Red hello, I am 44 & when my spine curved 2 80% I had 2 have a total spinal fusion. I really did'nt have a choice cuz it was effecting my breathing & no pain killers were working. They got my spine 2 a 20% after surgery. I was living in Neveda at the time but I had a very good spine care Dr. I did move back 2 Okla. After I recovered from my surgery, which I think was in a yr or 1 1/2 yrs I went back 2 work but within 6 mos the top screws popped lose & I was in alot of pain & had 2 find a dr 2 remove it. I was still in alot of pain so I had 2 quit my job & go on welfare & food stamps 2 help support my son. Within a yr my pain had gotten worse & went 2 the OU Med Center in Okla City & Dr. Puckett removed all of my hardware with a 50% chance of the pain being better. But unfortunetly it has'nt gotten better & I suffer daily even on a high dose pain med. But every1 is different. But u need 2 find a good Dr. I am on Medicaid & Medicare also & I was able 2 get my own Dr. without a referral. Cuz when ur on Medicare u can. I will be praying 4 u. God bless u. > > > > > > > > > > Hi, > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 21, 2009 Dear Red, u can call ur dr yourself. Tell him u will find a different dr if he won't help u cuz u really need 2 see a scoliosis specialist. Are u having alot of pain? I have went through therapy 3-4 times but it did'nt help. I wish I could afford a hot tub cuz atleast I know that I could have some pain relief while I am in it. I've tried all the rubs & I have a good back musagger. I also have artharitis in my right hip now & that's the hip that they had 2 scrape 2 fuse my spine. So may God bless us all. > > > > > > > > > > > > Hi, > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 22, 2009 I am in pain, some days alot and some days i am fine , but i don't know any doctor that deals with it. > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 22, 2009 do you have a dent where u were scraped? I have a silver dollar shaped indentation on my lower back, next to my spine that looks bad. Sometimes shows more than other times. And it hurts. Right below it, it hurts so bad I can't touch the spot. I get trigger point injections every couple of months. Are you fused to S1? I am, and I'm wondering if the painful spot is where the screw goes in. I've had 4 surgeries, and I have so many area of pain and also areas where I'm completely numb. I'm wondering if that indentation is where I was scraped. I know I had awful pain a couple weeks after my big surgery, and I was told it was from being scraped. Now they can use fake bone to avoid that problem. ________________________________ From: red74745 <red74745@...> Scoliosis Treatment Sent: Saturday, August 22, 2009 3:41:01 PM Subject: Re: hello  I am in pain, some days alot and some days i am fine , but i don't know any doctor that deals with it. > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2009 Hi, there, Red.  There is a study at a major university to check the DNA in blood of scoli patients who have no known cause for it (idiopathic). Darn. Can't remember where? Can anyone remember? Essentially, it's FREE DNA TESTING. Also, be sure to have a blood test for Charcot-Marie-Tooth Disease. It tests for 27 types of CMT, but there are 44 and counting. If you have any numbness in your feet, pins and needles, RLS, drop foot, ankle weakness, please seek further testing: an EMG and nerve conduction tests. Twenty-seven percent of scoli patients have CMT, a neuromuscular disease.  Lj From: red74745 <red74745@...> Subject: hello Scoliosis Treatment Date: Saturday, August 15, 2009, 3:57 AM  I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2009 Could you please provide more info about CMT. ?My son has had 2 surgeries for scoliosis at age 16 and 19. ?He now 24 and having problems that sound like what you have described with numbness in his feet, pins / needles, etc. ?Is there a treatment for CMT? hello Scoliosis Treatment Date: Saturday, August 15, 2009, 3:57 AM ? I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2009 I live in Arkansas. I don't know where you are from. But I have gone to a group of Spinal Surgeons that have been great. My 1st dr. was great and then I got the Scoliosis and he doesn't do that long of a surgery (all day for me). My dr. who is to operate I think is mad because I cancelled his first surgery because I had a 10 min. talk w/ him (that's it). I needed to ask and know him more I felt & my husband too. Two surgery to go for I had a sore on me from a long scar that thinned my tissue at the end and it pops up off and on. They or we cancelled. Then, I was to have surgery last week, Friday. I went in to get a PIC line Thursday it was put in and I waited til 12:00 or later and I was hurting so had and felt like I had the flu for 2 days. I asked if the nurse would call my doc. for a shot and he said no! My husband said that's it, I'm getting you out of here and home where you can be comfortable. From: red74745 <red74745@...> Subject: Re: hello Scoliosis Treatment Date: Saturday, August 22, 2009, 10:41 PM  I am in pain, some days alot and some days i am fine , but i don't know any doctor that deals with it. > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2009 Why did your son need two surgeries if you don't mind my asking? TIA, n ------- Original Message ------- From : KnightonND@...[mailto:KnightonND@...] Sent : 8/23/2009 1:25:54 PM To : Scoliosis Treatment Cc : Subject : RE: Re: hello Could you please provide more info about CMT. ?My son has had 2 surgeries for scoliosis at age 16 and 19. ?He now 24 and having problems that sound like what you have described with numbness in his feet, pins / needles, etc. ?Is there a treatment for CMT? -----Original Message----- Hi, there, Red. ? There is a study at a major university to check the DNA in blood of scoli patients who have no known cause for it?(idiopathic).? Darn.? Can't remember where?? Can anyone remember? Essentially, it's FREE DNA TESTING.? Also, be sure to have a blood test for Charcot-Marie-Tooth Disease.? It tests for 27 types of CMT, but there are 44 and counting.? If you have any numbness in your feet, pins and needles, RLS, drop foot, ankle weakness, please seek further testing:? an EMG and nerve conduction tests.? Twenty-seven percent of scoli patients have CMT, a neuromuscular disease. ? Lj Date: Saturday, August 15, 2009, 3:57 AM ? I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 25, 2009 I live in oklahoma in small town, i have no surgeries done on my back and to be honest, i don't want nothing down to my back iam so scared i am going to end up worse than i was, i don;t wan to be taking pain killers and nothing is better. i am going to get some x-rays and it goes from there. > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 25, 2009 Hi, there, the best place to look for information about CMT is the Charcot-Marie-Tooth Association. they have an excellent web site to search for information. The list of symptoms seems endless and I think I have all of them! hahahahaha The ones I listed in my list below are the most common. CMT is a cross between MS and ALS, and isn't usually fatal. The treatment given for CMT may be just making a patient with CMT aware to not overuse muscles, which damages them, makes them weaker. Leg braces, sleep studies, pain medication. Sometimes, a patient is sent to physical therapy or to a physiatrist, who is a doctor specializing in how the muscles and nerves work together.  Basically, what happens in a person with CMT, the covering over the nerves 'frays' and/or the nerves die, beginning in the feet, and he/she may be diagnosed with 'neuropathy.' That's a catch word for all kinds of nerve disorders. CMT is a specific type of neuropathy which is inherited.  This is a good beginning, but it's a tip of the iceberg, really. I hope you DON'T have CMT. It's just good to be aware that CMT is often a conglomerate of many problems that are most often medically treated individually. I have, for instance, besides scoliosis, ALS, asthma and sleep apnea. All part of CMT.  Please don't take no for an answer when you ask for a blood test for CMT, and if negative, ask for nerve conduction and EMG tests to make sure to rule it out. It's miserable if left untreated.  lj CMT2 From: red74745 <red74745hotmail (DOT) com> Subject: hello Scoliosis Treatment Date: Saturday, August 15, 2009, 3:57 AM ? I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2009 I just got mine x-rays and so worried what its going to revel . > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > > > > > I can understand your fear, I was 17 in 1977 when I had surgery to correct my scoliosis. My curve was around 50 degrees and they reduced it to 13. I have done very well for the 30 plus years since that surgery, got married, had three children, and have done pretty much everything I wanted. > > > > > > > > > > > > > > > > > > The good news for you is that experienced scoliosis surgeons have so much better technology and skills than they had thirty years ago. You need to go to the Scoliosis Research Society website and read everything you can about your condition. They also have a physician referral system to help you find some doctors that you can set up consults with. See at least three different doctors before making any decision. Make certain they do nothing but scoliosis work and ask to speak to previous patients. Before you go, make a list of questions to ask the doctor. Bring your parents, or someone you trust, with you to these meetings to help take notes as there will be too much information for you to digest yourself. Write it all down. > > > > > > > > > > > > > > > > > > Take a deep breath and try to relax. There is help out there for you and going to the SRS website is a great place to start getting that help. > > > > > > > > > > > > > > > > > > Jeanne > > > > > > > > > > > > > > > > > > > > > > > > > > > hello > > > > > > > > > > > > > > > > > > > > > > > > > > > I am very new I just found out about my condition, just about month now, and its still scary, I don't know what type I have, All I know its in my back in the lower back, at 80 degrees i am in physical therapy, and its hard work, and i am in my late 20's I feel very much alone. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 16, 2009 813 672-3419 H 813 786-0136 C At 05:06 PM 9/13/2009 +0000, you wrote: >Good afternoon Mr. : I've ordered and read most of " A call to >Immunics " , completed Lesson 1(taking the exam)and I can't get a signal to >save my life.(Initially a play on words, but perhaps accurate)I want to >learn to cure not only for myself,(as I have a health concern) but, for a >dear friend who has cancer. She was recently told she has a second tumor >since she has started chemo. I am certain you are always busy, but a small >point in the right direction would be most appreciated. > >Thank you and best regards, > > A. > >P.S. Yes, this did take some courage to write to you since I don't like to >admit I can't do something! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 27, 2009 Hi Carol, That's why we're here. And once you've been activated for a while, you'll want to help others with their journey toward hearing. Losing a sense, like hearing, is much like death. If you haven't read beth Kubler-Ross' book, " On Death and Dying " you should pick it up. It describes the stages of acceptance. And it's very similar to the process one goes through when a sense is lost as well. First step is Denial. Of course everyone is mumbling, I couldn't be deaf. Etc. Finally you get to the stage where you are. " Stuff happens, life goes on " But it is very frustrating to have an invisible disability. It's not like you're in a wheelchair, and people can SEE you have a problem. But we've all been there. Having people think your stuck up because you ignore them. I once had a field practice supervisor tell me that saying I was deaf was a " cop out line of Cr_p " How's that for understanding? And this was when I had NO hearing, prior to my first implant, and was relying on lipreading.!!! Check out all the details on all brands available. My choice has been Cochlear because of the backward compatability. Whatever advances they make, they make available for people who were implanted years ago. So the new Freedom 5 remote will be compatable with the older Freedom processor I have. I also like the ability to use either disposable or rechargeable batteries. Good luck. We're here to answer your questions. ____________________________________________________________ Top Career Training Start your new career with certification from the top online programs. http://thirdpartyoffers.juno.com/TGL2141/c?cp=gmTBAb06yK7YNMlIoy9ydwAAJ1CAYQG2fn\ ZWBLacCwlpBoaTAAQAAAAFAAAAAPLSzT0AAANSAAAAAAAAAAAAAAAAAAaDeQAAAAA= Quote Share this post Link to post Share on other sites
