Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 Hi Bernadette, Welcome to the group. I think I speak for every one of our members when I say that we have all experienced pretty much exactly the kinds of problems you are describing.....so that makes at least 600+ of us....you have found the right group! As you become familiar with the group you might want to utilize some of the information and links that are available on the main group site, particularly in the files and links section. You can read member stories and find tons of information. You also might want to try using the search feature on the group and try key words such as a doctors name you are considering, or even your state or area to see if anyone else lives near you or has had good luck with a particular doctor or related care. Finding the right doctor has been a trick for most of us. Very few of us were fortunate enough to find one of the handfuls of doctors that truely specializes in post harrington rod/scoliotic adults. Naturally finding someone who recognizes the big challenges we are AND who can deal with them appropriately often involves some travel. After all...since its unlikely you have ever met anyone else who is like you, medically, it stands to reason that you will have to look pretty hard to find a doctor who has experience in your problems. One of the first places we direct people to who are looking for care is to the Scoliosis Research Society's website. This group is made up of surgeons and affiliated medical professionals who even further specialize (usually) in either adults or children. If you go to their physician locator (www.srs.org) you can sort any way you wish....but is you search FL, for example, you can see who might be worth considering, at least from a geographic standpoint. Naturally you are looking for someone who deals with adults. Part of the requirement for membership in the organization is that the doctor must devote a signifigant portion of their practice to deformity. Thus, at least you likely wont get that " we cant do anything for you " answer...because these doctors will be well aware of the " state of the art " . It bears saying often on this group, just because someone wants to do surgery on you, you dont have to let them. You must do your own diligence and search for the right surgeon for you. One name that I think you can find information on here for the FL west coast is Dr Moreno. I think several members have consulted with him so he might be worth a consult. I hope others will chime in when you specify exactly where you are located. Other things to think about are other cities that might be possible for you to travel to for a consult...perhaps because you will be visiting friends or family anyway. Point being...the care you need may not be in your back yard...but most of us have managed to work our way around that problem! Please feel free to share more of your journey when you can. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 hi Bernadette,I was wondering if you could send me some information about applying for disability. I don't know if I'm going to apply at this time but some people think I should since I can't really work full time. I can still work but am worse some days and better others. I do worry about a full time job because I get vertigo a lot and it worries me to have to drive or be committed to anything. I get the vertigo from my neck and chiari malformation. I think the weakness in my legs and feet are from the rod and disc compression in my back.thanksericaFrom: Bernadette <spicejasmine@...> Sent: Sat, January 8, 2011 8:28:07 AMSubject: RE: [ ] 1970 Harrington Rod Hi a, This is one group I didn’t really want to join, I hate the fact I should be enjoying my life now that I am older and here I go again. My neck has a blow disc at C3 and one at T6 another at L4-5 So I am all the way down in trouble. The epidurals helped but it was for the pain, now I have same things you speak of, numbness in the feet, legs, hands, arms, along with pain in my back, and left leg. I don’t want any more fusions. I am fused from T5 to L4 and now I will probably have to have that fused because the at L4-5 I have instability, looks like the disc slid off to one side. I have a compressed nerve root there and that is what put me on disability at age 50. I do well most days, I only use Aleve or a muscle relaxer for pain. I am scared of the drugs and don’t want to be addicted to them. I am going to start looking for a Dr this week. I am on disability so I have to get authorizations from my PC. I did fall in April, and I fell on my left side of my hip and arm so maybe the fall did something to make this act up. Anyway, we are in the same boat, club or group and I hope we don’t have to say long. I will keep you posted, email me any time, am home most days. I do freelance art and started getting some work in magazines for publication. I like staying in for the most part. Thank you again, Bern From: [mailto: ] On Behalf Of erica rasmussen Sent: Friday, January 07, 2011 10:32 PM Subject: Re: [ ] 1970 Harrington Rod Hello, I'm sorry to hear of what you are going through. This is a good group to find people to talk to. I have had the harrington rod since 1978. I have had CAT Scans done that says that my lower vertebra in the lumbar spine are now being compressed. I have problems with my legs feeling heavy, weakness, weird feelings around my ankles, numbness off and on around my ankles. I also have weakness in my arms and numbness and tingling sometimes in my hands. Mostly the left side of my body. I also have degeneration in my discs in my neck. I have heard from talking to various doctors that the vertebrae in my lumbar spine could be affecting my legs and weakness but it wouldn't affect my arms this would come more from the neck area. If your problem is below the waist it wouldn't be affecting your arms. But I have another issue besides this to deal with. I have chiari malformation which can affect parts of your body all over, so this is where I become very complicated, it's hard to know where any of my problems are coming from. Some doctors say for me to fuse my neck to help my hands and arms while others say to definately don't do it. Some doctors say the problems with my spine are affecting the legs/feet but others say that the chiari can do that. So I feel like I never know. If you are having problems with your arms it makes me wonder where that is coming from. Have you had a full MRI of the cervical spine as well? Also if you get shots for pain management and they help the pain you might want to try acupuncture. I have used this for many years and it has helped in a lot of areas. Also I heard that feldenkrais and yoga helps also. I plan to do this but I never seem to, but I know I should. Welcome to the group erica From: Bernadette <spicejasmine@...> Sent: Fri, January 7, 2011 2:32:45 PM Subject: [ ] 1970 Harrington Rod Hi all, New to the group and wanted to ask if anyone has had pain and problems after getting fusions and Harrington Rod put in back in the late 60's to 70's? I had a double curve and in 1969 had the bottom curve corrected and fused and then they did the upper and put in the Harrington Rod with was new to Pittsburgh. I was one of the first in Children's to have one put in with Dr.son and Dr. Stone. I live in FL and now can't get anyone to even give me an appointment, they don't want to touch it. I did find a Dr. Bono with Gulf Coast Spinal near my home and have plans to see him. I now have 3 discs out, one bulged at L4-5. My rod looks good, but due to age, my fusions have some fractures and I have instability (?) nerve compression at L4-5. I live most days okay, but I am in pain. I just wonder about others here, if they can shed any light on long term with this disease? I am losing feeling in my hands, and arms, and left leg and foot. It comes and goes, and have pain in the left hip and thigh. I have done 9 rounds of epidurals, 3 sessions a yr for 3 years, which did help. I don't do any other pain mgtm. Thanks No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.872 / Virus Database: 271.1.1/3354 - Release Date: 01/07/11 02:34:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Hello a, as I wrote before I am in a position for applying for disability, this was the doctor's sugestion. Some days I feel better some others worse but the point is that there is no day without problem and pain. The doctor advised me that now I am 38 years old, if I still work full time what will happen after 20 years that I have to be strong for my family. The problem I don't know what happens in your situation is if you will loose your position or not and if they are allowed due to a disability to remove you from your position. I am happy to share your thougths. Thank you Stavroula From: erica rasmussen <toblueeyez@...> Sent: Mon, March 7, 2011 3:00:56 AMSubject: Re: [ ] 1970 Harrington Rod hi Bernadette,I was wondering if you could send me some information about applying for disability. I don't know if I'm going to apply at this time but some people think I should since I can't really work full time. I can still work but am worse some days and better others. I do worry about a full time job because I get vertigo a lot and it worries me to have to drive or be committed to anything. I get the vertigo from my neck and chiari malformation. I think the weakness in my legs and feet are from the rod and disc compression in my back.thankserica From: Bernadette <spicejasmine@...> Sent: Sat, January 8, 2011 8:28:07 AMSubject: RE: [ ] 1970 Harrington Rod Hi a, This is one group I didn’t really want to join, I hate the fact I should be enjoying my life now that I am older and here I go again. My neck has a blow disc at C3 and one at T6 another at L4-5 So I am all the way down in trouble. The epidurals helped but it was for the pain, now I have same things you speak of, numbness in the feet, legs, hands, arms, along with pain in my back, and left leg. I don’t want any more fusions. I am fused from T5 to L4 and now I will probably have to have that fused because the at L4-5 I have instability, looks like the disc slid off to one side. I have a compressed nerve root there and that is what put me on disability at age 50. I do well most days, I only use Aleve or a muscle relaxer for pain. I am scared of the drugs and don’t want to be addicted to them. I am going to start looking for a Dr this week. I am on disability so I have to get authorizations from my PC. I did fall in April, and I fell on my left side of my hip and arm so maybe the fall did something to make this act up. Anyway, we are in the same boat, club or group and I hope we don’t have to say long. I will keep you posted, email me any time, am home most days. I do freelance art and started getting some work in magazines for publication. I like staying in for the most part. Thank you again, Bern From: [mailto: ] On Behalf Of erica rasmussenSent: Friday, January 07, 2011 10:32 PM Subject: Re: [ ] 1970 Harrington Rod Hello,I'm sorry to hear of what you are going through. This is a good group to find people to talk to. I have had the harrington rod since 1978. I have had CAT Scans done that says that my lower vertebra in the lumbar spine are now being compressed. I have problems with my legs feeling heavy, weakness, weird feelings around my ankles, numbness off and on around my ankles. I also have weakness in my arms and numbness and tingling sometimes in my hands. Mostly the left side of my body. I also have degeneration in my discs in my neck. I have heard from talking to various doctors that the vertebrae in my lumbar spine could be affecting my legs and weakness but it wouldn't affect my arms this would come more from the neck area. If your problem is below the waist it wouldn't be affecting your arms. But I have another issue besides this to deal with. I have chiari malformation which can affect parts of your body all over, so this is where I become very complicated, it's hard to know where any of my problems are coming from. Some doctors say for me to fuse my neck to help my hands and arms while others say to definately don't do it. Some doctors say the problems with my spine are affecting the legs/feet but others say that the chiari can do that. So I feel like I never know. If you are having problems with your arms it makes me wonder where that is coming from. Have you had a full MRI of the cervical spine as well? Also if you get shots for pain management and they help the pain you might want to try acupuncture. I have used this for many years and it has helped in a lot of areas. Also I heard that feldenkrais and yoga helps also. I plan to do this but I never seem to, but I know I should.Welcome to the grouperica From: Bernadette <spicejasmine@...> Sent: Fri, January 7, 2011 2:32:45 PMSubject: [ ] 1970 Harrington Rod Hi all,New to the group and wanted to ask if anyone has had pain and problems after getting fusions and Harrington Rod put in back in the late 60's to 70's? I had a double curve and in 1969 had the bottom curve corrected and fused and then they did the upper and put in the Harrington Rod with was new to Pittsburgh. I was one of the first in Children's to have one put in with Dr.son and Dr. Stone. I live in FL and now can't get anyone to even give me an appointment, they don't want to touch it. I did find a Dr. Bono with Gulf Coast Spinal near my home and have plans to see him. I now have 3 discs out, one bulged at L4-5. My rod looks good, but due to age, my fusions have some fractures and I have instability (?) nerve compression at L4-5. I live most days okay, but I am in pain. I just wonder about others here, if they can shed any light on long term with this disease? I am losing feeling in my hands, and arms, and left leg and foot. It comes and goes, and have pain in the left hip and thigh. I have done 9 rounds of epidurals, 3 sessions a yr for 3 years, which did help. I don't do any other pain mgtm. Thanks No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 9.0.872 / Virus Database: 271.1.1/3354 - Release Date: 01/07/11 02:34:00 Quote Link to comment Share on other sites More sharing options...
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