Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Hi .... I am glad that you found this group....they are a huge help with many things....information...support...making friends from all over...and when you need to vent...this is the place...not only can you tell us how you feel and know that you are really being heard...but there are so many times that someone can tell you that they have been thru the same thing and therefore give you the strength to get thru it also... Your pred dose is low...have they ever tried going alternate days...10 one day and then a lower dose the next and then back to 10...some of the people here have done that and always very slowly reducing....taking months to maybe only come down a couple of mgs....the other med you are on I am not familar with...is there another name for it...do you live in the states....some of the people are from other countries and so the meds are sometimes called something else.... I know that chronic use of pred can cause diabetes........I know it is very important to monitor it very carefully....I wish you the best with this...it is tough when you have more than one thing to look after... Where do you live and what part of the hosp do you work in....I know being a nurse is a very demanding job... How bad are your playlets....years ago I went to my PCP and told them I needed a complete physical....and was worried about all the bruises...my legs and arms...one of the main doctors got involved...and asked me about abuse...well of course that was not the situation....so they did labs...my playlets were very low....30,000 and they right away sent me to a hematologist...I had to have a bone marrow test...and lots of more labs...they were afraid I had leukemia...boy was I scared...but it turned out fine....they said I had ITP...no real known cause and most of the time it gets better on its own...which in time it has ...although they are still only 120's...they are watched closely.... But it is not me who has any liver disease or anything else that I know of...it is my son...he is now 19...I have been here with this group and another one...(dealing with another liver disease...PSC...which my son also has.)...he has been sick since he was 9...and also has playlets that are very low....mainly because of his spleen...which now is better than last yr...last yr his spleen was huge...covered his entire abdomen...pushing on his liver and down below his naval and high enough to make breathing difficult...he spent 3 months the winter of 2001 in and out of the hosp...very sick...running temps of 105...turned out that his spleen was infacting because of lack of blood flow....we know of three large areas that have died off...very painful process... he also has the varcies from portal hypertension.... he also has other autoimmune diseases...Crohns,RA,Vasculitis and then of course all the lovely side effects...terrible dexa tests....you name it... You will find alot of support here...I hope to be able to get to know you better.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Hi Luanne, Thank you and all of you for the support and information I have already received. To answer some of your questions: One of the main reasons that my Prednisone dosage is so low is because I am very drug sensitive. This is an advatage when it comes to dosage but a disadvantage when it comes to being able to tolerate drugs. My theory is that because my liver function is comprimised, the drugs don't clear from my system. After about the 4th or 5th dose, I start developing side effects to the point that they become severe and I have to stop the drug. I have tried several tapering methods. It seems just one milligram less and I have a flair-up. Aldactone or Spiralactone is a diuretic. It helps with the fluid retention. My platelets run now less than 30,000. My spleen is very enlarged and evidently eating the good platelets as well as the old ones. There was also the possibility of auto-immune thrombocytopenia but that test was negative. The last time they tried giveing me platelets for a banding proceedure, I had a reaction to the second 6pack and my platelets went back down to 24,000 within an hour. I spiked a temp to 104 and we cancelled the proceedure. The doctors at the University of Washington tell me that banding isn't always reccomended for varicies. I live in Bellingham, Washington. I am doing in-home intensive care. One client with a stroke paralyzed from the neck down and on a ventilator and a 9mo old boy who was 24 weeks premature. They have a lot of courage and will to live and keep me inspired. It is always good to help others to keep me from feeling sorry for myself. Thank you all again for your support and caring. Blessings to you and yours... BBNLU@... wrote: Hi .... I am glad that you found this group....they are a huge help with many things....information...support...making friends from all over...and when you need to vent...this is the place...not only can you tell us how you feel and know that you are really being heard...but there are so many times that someone can tell you that they have been thru the same thing and therefore give you the strength to get thru it also... Your pred dose is low...have they ever tried going alternate days...10 one day and then a lower dose the next and then back to 10...some of the people here have done that and always very slowly reducing....taking months to maybe only come down a couple of mgs....the other med you are on I am not familar with...is there another name for it...do you live in the states....some of the people are from other countries and so the meds are sometimes called something else.... I know that chronic use of pred can cause diabetes........I know it is very important to monitor it very carefully....I wish you the best with this...it is tough when you have more than one thing to look after... Where do you live and what part of the hosp do you work in....I know being a nurse is a very demanding job... How bad are your playlets....years ago I went to my PCP and told them I needed a complete physical....and was worried about all the bruises...my legs and arms...one of the main doctors got involved...and asked me about abuse...well of course that was not the situation....so they did labs...my playlets were very low....30,000 and they right away sent me to a hematologist...I had to have a bone marrow test...and lots of more labs...they were afraid I had leukemia...boy was I scared...but it turned out fine....they said I had ITP...no real known cause and most of the time it gets better on its own...which in time it has ...although they are still only 120's...they are watched closely.... But it is not me who has any liver disease or anything else that I know of...it is my son...he is now 19...I have been here with this group and another one...(dealing with another liver disease...PSC...which my son also has.)...he has been sick since he was 9...and also has playlets that are very low....mainly because of his spleen...which now is better than last yr...last yr his spleen was huge...covered his entire abdomen...pushing on his liver and down below his naval and high enough to make breathing difficult...he spent 3 months the winter of 2001 in and out of the hosp...very sick...running temps of 105...turned out that his spleen was infacting because of lack of blood flow....we know of three large areas that have died off...very painful process... he also has the varcies from portal hypertension.... he also has other autoimmune diseases...Crohns,RA,Vasculitis and then of course all the lovely side effects...terrible dexa tests....you name it... You will find alot of support here...I hope to be able to get to know you better.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 What exactly is drug sensitive? Could it be that I am drug sensitive since I have taken so many different meds to help check this AIH? And, could that be the reason why I cannot tolerate the regular sedation that most people have for the endoscopies and stuff? Just curious.. debby Re: [ ] ...New Member Hi Luanne, Thank you and all of you for the support and information I have already received. To answer some of your questions: One of the main reasons that my Prednisone dosage is so low is because I am very drug sensitive. This is an advatage when it comes to dosage but a disadvantage when it comes to being able to tolerate drugs. My theory is that because my liver function is comprimised, the drugs don't clear from my system. After about the 4th or 5th dose, I start developing side effects to the point that they become severe and I have to stop the drug. I have tried several tapering methods. It seems just one milligram less and I have a flair-up. Aldactone or Spiralactone is a diuretic. It helps with the fluid retention. My platelets run now less than 30,000. My spleen is very enlarged and evidently eating the good platelets as well as the old ones. There was also the possibility of auto-immune thrombocytopenia but that test was negative. The last time they tried giveing me platelets for a banding proceedure, I had a reaction to the second 6pack and my platelets went back down to 24,000 within an hour. I spiked a temp to 104 and we cancelled the proceedure. The doctors at the University of Washington tell me that banding isn't always reccomended for varicies. I live in Bellingham, Washington. I am doing in-home intensive care. One client with a stroke paralyzed from the neck down and on a ventilator and a 9mo old boy who was 24 weeks premature. They have a lot of courage and will to live and keep me inspired. It is always good to help others to keep me from feeling sorry for myself. Thank you all again for your support and caring. Blessings to you and yours... BBNLU@... wrote: Hi .... I am glad that you found this group....they are a huge help with many things....information...support...making friends from all over...and when you need to vent...this is the place...not only can you tell us how you feel and know that you are really being heard...but there are so many times that someone can tell you that they have been thru the same thing and therefore give you the strength to get thru it also... Your pred dose is low...have they ever tried going alternate days...10 one day and then a lower dose the next and then back to 10...some of the people here have done that and always very slowly reducing....taking months to maybe only come down a couple of mgs....the other med you are on I am not familar with...is there another name for it...do you live in the states....some of the people are from other countries and so the meds are sometimes called something else.... I know that chronic use of pred can cause diabetes........I know it is very important to monitor it very carefully....I wish you the best with this...it is tough when you have more than one thing to look after... Where do you live and what part of the hosp do you work in....I know being a nurse is a very demanding job... How bad are your playlets....years ago I went to my PCP and told them I needed a complete physical....and was worried about all the bruises...my legs and arms...one of the main doctors got involved...and asked me about abuse...well of course that was not the situation....so they did labs...my playlets were very low....30,000 and they right away sent me to a hematologist...I had to have a bone marrow test...and lots of more labs...they were afraid I had leukemia...boy was I scared...but it turned out fine....they said I had ITP...no real known cause and most of the time it gets better on its own...which in time it has ...although they are still only 120's...they are watched closely.... But it is not me who has any liver disease or anything else that I know of...it is my son...he is now 19...I have been here with this group and another one...(dealing with another liver disease...PSC...which my son also has.)...he has been sick since he was 9...and also has playlets that are very low....mainly because of his spleen...which now is better than last yr...last yr his spleen was huge...covered his entire abdomen...pushing on his liver and down below his naval and high enough to make breathing difficult...he spent 3 months the winter of 2001 in and out of the hosp...very sick...running temps of 105...turned out that his spleen was infacting because of lack of blood flow....we know of three large areas that have died off...very painful process... he also has the varcies from portal hypertension.... he also has other autoimmune diseases...Crohns,RA,Vasculitis and then of course all the lovely side effects...terrible dexa tests....you name it... You will find alot of support here...I hope to be able to get to know you better.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 , It is because of outcomes like you and I and others here have had, that I am so passionate about this. How do you know if no one tells you? No one told me. I didn't know...but I do now! I so want to help people avoid the pitfalls of routine back surgery. Like you also said, sometimes you DO need surgery. My last fusion was absolutely necessary...but maybe I wouldn't have had to have six surgeries and I lifetime of chronic pain, if someone had helped me make an informed decision when I had my first surgery. Hope you are well today! Three days of rain coming up here..ugh. I'll be curled up in the fetal position! --- From: Dianne <dianne12315> Subject: New Member spinedisorderssuppo rtgroup@gro ups.com Date: Wednesday, April 1, 2009, 5:43 PM Hi Everyone, I'm new to the group but not to neck or back pain. I've had ongoing neck problems for the past 20+ years. In the beginning of Feb 2009 I was sitting here playing Solitaire on my computer when I felt this intense pain between my shoulder blades. I didn't think too much of it and figured it would feel better by the next day. Unfortunately it didn't and got so bad I finally resorted to goingto my doctor. He gave me 4 shots of cortisone in my neck/shoulder blade (right side) but it didn't help. A few days later I went back because of the intense pain and he sent me for an MRI. The MRI showed I have a " moderate herniation at C6-7 level. " By now the pain is going down my arm and my thumb, index and middle fingers are tingling at times. My regular MD didn't feel it was necessary to send me to an orthopedic so he ordered Lortabs 10mg which did next to nothing for me. I started seeing a Chiropractor who started using the Tens Unit(?) and heat. This kind of felt good but as soon as I was back in my car the pain returned. I called him the next day and then Spinal Decompression was started. I found this to be very painful but he was persistent and said it would help as long as I stuck with it. After 5 visits I called my orthopedic md and he told me that nothing was going to work and he was more than 99% sure I was going to need surgery. Not what I wanted to hear. He did start me on the Medrol Pack and I got some relief from the sterioids. Once they finished I called the Neurosurgeon and got an appointment right away. As soon as he examined me he said I needed surgery because my triceps muscle was not as it should be and he was even more convinced once he looked at my MRI. He showed me the herniation and showed where it was pressing on my spinal cord and nerves. The pain I have been in for the past 6 - 8 weeks is like nothing else I've ever felt. Having my gall bladder out was a picnic compared to this. I'm having surgery on April 7 and from what he told me I will also have screws in my neck when he is done. I know the name of the procedure he is doing but right now it has slipped my mind. He also says I will be back to work (lifting, pulling etc) in a week. I am wondering if anyone here has an encouraging words for me since all my friends are telling me to think twice. I'm not so sure I can forego this surgery. The pain is to the point where I want it gone. Thank you in advance. Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 , You have said a mouthful, like 20 years of experience, in just a paragraph, and a sentence. If I had more information back when I had my first spine surgery experience, even though it was an emergency situation, I would have done things a whole lot different. Being able to help others with that experience is little com-paired to the first hand experience of a scrub-in nurse on these type of surgeries, that and being a spine patient also is quite a bit more. We do all appreciate the advice/knowledge of your experience's believe me, you have a lot more answers than I. And that last sentence tells more than you know, only a spine disorder patient can appreciate the horror of an oncoming storm. lol That being said, I will be having some questions of my own coming up soon, as my PM wants me to see a ortho soon, now that he has read the results of my CT scan from last month. I am not looking forward to this, for one he would not go into detail with me until I see the ortho., but I do know I have spurs, and in the words of a MRI reading I had done in late 07, it did not look good. No wonder I have been having so much pain in my neck.(no pun intended) Have a good day, and I hope your pain is less during this storm. God bless you . Bama, The dog has seldom been successful in pulling man up to its level of sagacity, but man has frequently dragged the dog down to his. Thurber ________________________________ From: Babbitt <tpowell1977@...> spinal problems@... Sent: Wednesday, April 1, 2009 8:06:59 PM Subject: Re: ...New Member , It is because of outcomes like you and I and others here have had, that I am so passionate about this. How do you know if no one tells you? No one told me. I didn't know....but I do now! I so want to help people avoid the pitfalls of routine back surgery. Like you also said, sometimes you DO need surgery. My last fusion was absolutely necessary... but maybe I wouldn't have had to have six surgeries and I lifetime of chronic pain, if someone had helped me make an informed decision when I had my first surgery. Hope you are well today! Three days of rain coming up here..ugh. I'll be curled up in the fetal position! --- From: Dianne <dianne12315> Subject: New Member spinedisorderssuppo rtgroup@gro ups.com Date: Wednesday, April 1, 2009, 5:43 PM Hi Everyone, I'm new to the group but not to neck or back pain. I've had ongoing neck problems for the past 20+ years. In the beginning of Feb 2009 I was sitting here playing Solitaire on my computer when I felt this intense pain between my shoulder blades. I didn't think too much of it and figured it would feel better by the next day. Unfortunately it didn't and got so bad I finally resorted to goingto my doctor. He gave me 4 shots of cortisone in my neck/shoulder blade (right side) but it didn't help. A few days later I went back because of the intense pain and he sent me for an MRI. The MRI showed I have a " moderate herniation at C6-7 level. " By now the pain is going down my arm and my thumb, index and middle fingers are tingling at times. My regular MD didn't feel it was necessary to send me to an orthopedic so he ordered Lortabs 10mg which did next to nothing for me. I started seeing a Chiropractor who started using the Tens Unit(?) and heat. This kind of felt good but as soon as I was back in my car the pain returned. I called him the next day and then Spinal Decompression was started. I found this to be very painful but he was persistent and said it would help as long as I stuck with it. After 5 visits I called my orthopedic md and he told me that nothing was going to work and he was more than 99% sure I was going to need surgery. Not what I wanted to hear. He did start me on the Medrol Pack and I got some relief from the sterioids. Once they finished I called the Neurosurgeon and got an appointment right away. As soon as he examined me he said I needed surgery because my triceps muscle was not as it should be and he was even more convinced once he looked at my MRI. He showed me the herniation and showed where it was pressing on my spinal cord and nerves. The pain I have been in for the past 6 - 8 weeks is like nothing else I've ever felt. Having my gall bladder out was a picnic compared to this. I'm having surgery on April 7 and from what he told me I will also have screws in my neck when he is done. I know the name of the procedure he is doing but right now it has slipped my mind. He also says I will be back to work (lifting, pulling etc) in a week. I am wondering if anyone here has an encouraging words for me since all my friends are telling me to think twice.. I'm not so sure I can forego this surgery. The pain is to the point where I want it gone. Thank you in advance. Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 And also you . I am humbly grateful for your thanks, I get a little embarrassed on here with gloating thanks and praise... I only want to help... I hope your appointment goes well. Bone spurs are terrible things and no, they just don't get smaller...they get bigger... --- in RI From: Dianne <dianne12315> Subject: New Member spinedisorderssuppo rtgroup@gro ups.com Date: Wednesday, April 1, 2009, 5:43 PM Hi Everyone, I'm new to the group but not to neck or back pain. I've had ongoing neck problems for the past 20+ years. In the beginning of Feb 2009 I was sitting here playing Solitaire on my computer when I felt this intense pain between my shoulder blades. I didn't think too much of it and figured it would feel better by the next day. Unfortunately it didn't and got so bad I finally resorted to goingto my doctor. He gave me 4 shots of cortisone in my neck/shoulder blade (right side) but it didn't help. A few days later I went back because of the intense pain and he sent me for an MRI. The MRI showed I have a " moderate herniation at C6-7 level. " By now the pain is going down my arm and my thumb, index and middle fingers are tingling at times. My regular MD didn't feel it was necessary to send me to an orthopedic so he ordered Lortabs 10mg which did next to nothing for me. I started seeing a Chiropractor who started using the Tens Unit(?) and heat. This kind of felt good but as soon as I was back in my car the pain returned. I called him the next day and then Spinal Decompression was started. I found this to be very painful but he was persistent and said it would help as long as I stuck with it. After 5 visits I called my orthopedic md and he told me that nothing was going to work and he was more than 99% sure I was going to need surgery. Not what I wanted to hear. He did start me on the Medrol Pack and I got some relief from the sterioids. Once they finished I called the Neurosurgeon and got an appointment right away. As soon as he examined me he said I needed surgery because my triceps muscle was not as it should be and he was even more convinced once he looked at my MRI. He showed me the herniation and showed where it was pressing on my spinal cord and nerves. The pain I have been in for the past 6 - 8 weeks is like nothing else I've ever felt. Having my gall bladder out was a picnic compared to this. I'm having surgery on April 7 and from what he told me I will also have screws in my neck when he is done. I know the name of the procedure he is doing but right now it has slipped my mind. He also says I will be back to work (lifting, pulling etc) in a week. I am wondering if anyone here has an encouraging words for me since all my friends are telling me to think twice.. I'm not so sure I can forego this surgery. The pain is to the point where I want it gone. Thank you in advance. Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Thanks, that was one of my questions. Bama, The dog has seldom been successful in pulling man up to its level of sagacity, but man has frequently dragged the dog down to his. Thurber ________________________________ From: Babbitt <tpowell1977@...> spinal problems Sent: Thursday, April 2, 2009 6:08:38 AM Subject: Re: ....New Member And also you . I am humbly grateful for your thanks, I get a little embarrassed on here with gloating thanks and praise... I only want to help... I hope your appointment goes well. Bone spurs are terrible things and no, they just don't get smaller...they get bigger... --- in RI From: Dianne <dianne12315> Subject: New Member spinedisorderssuppo rtgroup@gro ups.com Date: Wednesday, April 1, 2009, 5:43 PM Hi Everyone, I'm new to the group but not to neck or back pain. I've had ongoing neck problems for the past 20+ years. In the beginning of Feb 2009 I was sitting here playing Solitaire on my computer when I felt this intense pain between my shoulder blades. I didn't think too much of it and figured it would feel better by the next day. Unfortunately it didn't and got so bad I finally resorted to goingto my doctor. He gave me 4 shots of cortisone in my neck/shoulder blade (right side) but it didn't help. A few days later I went back because of the intense pain and he sent me for an MRI. The MRI showed I have a " moderate herniation at C6-7 level. " By now the pain is going down my arm and my thumb, index and middle fingers are tingling at times. My regular MD didn't feel it was necessary to send me to an orthopedic so he ordered Lortabs 10mg which did next to nothing for me. I started seeing a Chiropractor who started using the Tens Unit(?) and heat. This kind of felt good but as soon as I was back in my car the pain returned. I called him the next day and then Spinal Decompression was started. I found this to be very painful but he was persistent and said it would help as long as I stuck with it. After 5 visits I called my orthopedic md and he told me that nothing was going to work and he was more than 99% sure I was going to need surgery. Not what I wanted to hear. He did start me on the Medrol Pack and I got some relief from the sterioids. Once they finished I called the Neurosurgeon and got an appointment right away. As soon as he examined me he said I needed surgery because my triceps muscle was not as it should be and he was even more convinced once he looked at my MRI. He showed me the herniation and showed where it was pressing on my spinal cord and nerves. The pain I have been in for the past 6 - 8 weeks is like nothing else I've ever felt. Having my gall bladder out was a picnic compared to this. I'm having surgery on April 7 and from what he told me I will also have screws in my neck when he is done. I know the name of the procedure he is doing but right now it has slipped my mind. He also says I will be back to work (lifting, pulling etc) in a week. I am wondering if anyone here has an encouraging words for me since all my friends are telling me to think twice.. I'm not so sure I can forego this surgery. The pain is to the point where I want it gone. Thank you in advance. Dianne Quote Link to comment Share on other sites More sharing options...
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