Guest guest Posted May 14, 2003 Report Share Posted May 14, 2003 Hi Emma and welcome to the group. I personally think that some upper body symptoms are caused by the tension produced by TC. Also with you having one leg longer and all the compensating, I'm sure that the muscles in your back and neck are out of balance. Get as much information as you can while you are waiting to see your doctor and go in with questions written down. Hope this helps. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2003 Report Share Posted May 14, 2003 Hi Emma and welcome to the group. I personally think that some upper body symptoms are caused by the tension produced by TC. Also with you having one leg longer and all the compensating, I'm sure that the muscles in your back and neck are out of balance. Get as much information as you can while you are waiting to see your doctor and go in with questions written down. Hope this helps. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2003 Report Share Posted May 14, 2003 Hi Emma and welcome to the group. I personally think that some upper body symptoms are caused by the tension produced by TC. Also with you having one leg longer and all the compensating, I'm sure that the muscles in your back and neck are out of balance. Get as much information as you can while you are waiting to see your doctor and go in with questions written down. Hope this helps. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Nina I will try that with some of my friends. It sounds like a good idea. I have a lot of very good friends but I think it is because we are so young that the find it more difficult to understand. Having TCS has made me grow up a lot more quickly and I sometimes feel like there is a huge gap between us. Things like having my operation on the day of the end of A-level party and having a hospital appointment on the results day when they were all at school together really brought that home to me. I went to the GP today and he perscribed me ZYDOL 50mg. Have you used this before? I forgot to mention that I have an allergy to codine so some of the drugs that were suggested wouldn't have been appropriate. You are right, it is terrible waiting for appointments! Particularly since you don't know what sort of deterioration is taking place in the mean time. My mum rang up about my MRI results again and apparently the scans are sitting there but haven't been read yet. Every day this week she has called and they keep saying it would be done today. I am so frustrated and upset!! The secretary has taken a note that it is important yet they still dont do what they say they will. Sometimes doctors etc can be so apathetic. It has been five weeks now and I can't get onto the waiting list until it has been sent to the consultant. Anyway thanks for the advice about dealing with other people. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Nina I will try that with some of my friends. It sounds like a good idea. I have a lot of very good friends but I think it is because we are so young that the find it more difficult to understand. Having TCS has made me grow up a lot more quickly and I sometimes feel like there is a huge gap between us. Things like having my operation on the day of the end of A-level party and having a hospital appointment on the results day when they were all at school together really brought that home to me. I went to the GP today and he perscribed me ZYDOL 50mg. Have you used this before? I forgot to mention that I have an allergy to codine so some of the drugs that were suggested wouldn't have been appropriate. You are right, it is terrible waiting for appointments! Particularly since you don't know what sort of deterioration is taking place in the mean time. My mum rang up about my MRI results again and apparently the scans are sitting there but haven't been read yet. Every day this week she has called and they keep saying it would be done today. I am so frustrated and upset!! The secretary has taken a note that it is important yet they still dont do what they say they will. Sometimes doctors etc can be so apathetic. It has been five weeks now and I can't get onto the waiting list until it has been sent to the consultant. Anyway thanks for the advice about dealing with other people. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Nina I will try that with some of my friends. It sounds like a good idea. I have a lot of very good friends but I think it is because we are so young that the find it more difficult to understand. Having TCS has made me grow up a lot more quickly and I sometimes feel like there is a huge gap between us. Things like having my operation on the day of the end of A-level party and having a hospital appointment on the results day when they were all at school together really brought that home to me. I went to the GP today and he perscribed me ZYDOL 50mg. Have you used this before? I forgot to mention that I have an allergy to codine so some of the drugs that were suggested wouldn't have been appropriate. You are right, it is terrible waiting for appointments! Particularly since you don't know what sort of deterioration is taking place in the mean time. My mum rang up about my MRI results again and apparently the scans are sitting there but haven't been read yet. Every day this week she has called and they keep saying it would be done today. I am so frustrated and upset!! The secretary has taken a note that it is important yet they still dont do what they say they will. Sometimes doctors etc can be so apathetic. It has been five weeks now and I can't get onto the waiting list until it has been sent to the consultant. Anyway thanks for the advice about dealing with other people. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Emma, I have experienced the same response/attitude from people about the ongoing condition i.e. " what's wrong now*!*? " At the Pain Management Programme Oct-Dec 2002, I expressed this issue, as it used to get me really distressed that " no-one understands me any more, I feel really alone with all this, no-one wants to listen " . Nick (clinical psychologist) suggested that I should try to educate people about the condition; not to lecture them about all that goes on, but when you get that type of response, to try to explain in layman's terms what it all feels like, and how you feel emotionally about it (not just physical pain and symptoms). You could try and soften the education by saying something like " I know you are not the medical professional in all this, but I would like to explain how *I* feel right now, to try and work out some of the complications of it all, and indeed try to make sense of it to myself too " . You might find your family just act as a sounding board, but may also have some pov from an outsiders position. I do find the GP's are OK for regular things i.e. infections, basic structural problems (slipped discs etc), but they are not so clued up about unusual issues. This is the job of your consultant. Try to get on good terms with his/her secretary. Try to contact a or Rosemary Batchelor at Asbah in borough (address on web), as they can give specific opinions about what they think might be going on with your ex-TC. I do hope your can see your consultant soon - it is not very nice hanging on for an appointment, is it? Best wishes Nina --- Begin Forwarded Message --- Date: Thu, 15 May 2003 12:58:03 EDT From: EmmaJoyHunter@... Subject: Re: New member Sender: EmmaJoyHunter@... To: tetheredspinalcord Reply-To: tetheredspinalcord Message-ID: Hi Thanks for your reply. It was particularly interesting to me because you are experiencing the same upper back problems. Sometimes I feel like my parents and doctor develop a sort of 'whats gone wrong with you now' attitude and I feel like they think I am making it up. It is such a strange condition sometimes you just dont know what wierd thing is going to happen to you next. I had a pair of insoles made but I found them extremely uncomfortable. They brought back my old hip and knee problems and I they would only fit into one pair of my shoes. After discussing it with my GP we concluded that to change from wearing them to not wearing them might and vice versa would cause more harm than good. I will mention the drug you suggested to the doctor tomorrow. All the best Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Emma, I have experienced the same response/attitude from people about the ongoing condition i.e. " what's wrong now*!*? " At the Pain Management Programme Oct-Dec 2002, I expressed this issue, as it used to get me really distressed that " no-one understands me any more, I feel really alone with all this, no-one wants to listen " . Nick (clinical psychologist) suggested that I should try to educate people about the condition; not to lecture them about all that goes on, but when you get that type of response, to try to explain in layman's terms what it all feels like, and how you feel emotionally about it (not just physical pain and symptoms). You could try and soften the education by saying something like " I know you are not the medical professional in all this, but I would like to explain how *I* feel right now, to try and work out some of the complications of it all, and indeed try to make sense of it to myself too " . You might find your family just act as a sounding board, but may also have some pov from an outsiders position. I do find the GP's are OK for regular things i.e. infections, basic structural problems (slipped discs etc), but they are not so clued up about unusual issues. This is the job of your consultant. Try to get on good terms with his/her secretary. Try to contact a or Rosemary Batchelor at Asbah in borough (address on web), as they can give specific opinions about what they think might be going on with your ex-TC. I do hope your can see your consultant soon - it is not very nice hanging on for an appointment, is it? Best wishes Nina --- Begin Forwarded Message --- Date: Thu, 15 May 2003 12:58:03 EDT From: EmmaJoyHunter@... Subject: Re: New member Sender: EmmaJoyHunter@... To: tetheredspinalcord Reply-To: tetheredspinalcord Message-ID: Hi Thanks for your reply. It was particularly interesting to me because you are experiencing the same upper back problems. Sometimes I feel like my parents and doctor develop a sort of 'whats gone wrong with you now' attitude and I feel like they think I am making it up. It is such a strange condition sometimes you just dont know what wierd thing is going to happen to you next. I had a pair of insoles made but I found them extremely uncomfortable. They brought back my old hip and knee problems and I they would only fit into one pair of my shoes. After discussing it with my GP we concluded that to change from wearing them to not wearing them might and vice versa would cause more harm than good. I will mention the drug you suggested to the doctor tomorrow. All the best Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Emma, I have experienced the same response/attitude from people about the ongoing condition i.e. " what's wrong now*!*? " At the Pain Management Programme Oct-Dec 2002, I expressed this issue, as it used to get me really distressed that " no-one understands me any more, I feel really alone with all this, no-one wants to listen " . Nick (clinical psychologist) suggested that I should try to educate people about the condition; not to lecture them about all that goes on, but when you get that type of response, to try to explain in layman's terms what it all feels like, and how you feel emotionally about it (not just physical pain and symptoms). You could try and soften the education by saying something like " I know you are not the medical professional in all this, but I would like to explain how *I* feel right now, to try and work out some of the complications of it all, and indeed try to make sense of it to myself too " . You might find your family just act as a sounding board, but may also have some pov from an outsiders position. I do find the GP's are OK for regular things i.e. infections, basic structural problems (slipped discs etc), but they are not so clued up about unusual issues. This is the job of your consultant. Try to get on good terms with his/her secretary. Try to contact a or Rosemary Batchelor at Asbah in borough (address on web), as they can give specific opinions about what they think might be going on with your ex-TC. I do hope your can see your consultant soon - it is not very nice hanging on for an appointment, is it? Best wishes Nina --- Begin Forwarded Message --- Date: Thu, 15 May 2003 12:58:03 EDT From: EmmaJoyHunter@... Subject: Re: New member Sender: EmmaJoyHunter@... To: tetheredspinalcord Reply-To: tetheredspinalcord Message-ID: Hi Thanks for your reply. It was particularly interesting to me because you are experiencing the same upper back problems. Sometimes I feel like my parents and doctor develop a sort of 'whats gone wrong with you now' attitude and I feel like they think I am making it up. It is such a strange condition sometimes you just dont know what wierd thing is going to happen to you next. I had a pair of insoles made but I found them extremely uncomfortable. They brought back my old hip and knee problems and I they would only fit into one pair of my shoes. After discussing it with my GP we concluded that to change from wearing them to not wearing them might and vice versa would cause more harm than good. I will mention the drug you suggested to the doctor tomorrow. All the best Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear all, can anyone help with the possible side effects of Zydol, also called tramadol hydrochloride or Ultram Emma, I haven't taken it (or any other drugs, really!) so can't advise. A possible sneaky way of getting anything done is actually going into the hospital and seeing your consultant's secretary, full waterworks!! (yes I *know* it is sneaky, but if they see how upset and frustrated you are, it may just help - not always though). Another way I got moved further up Ian's list was to write to him directly, outlining exactly what I was going through (waiting for an appt, and then the surgery to happen). It did work as my appointment was pulled forward, and indeed the surgery date was set in stone. Regards Nina --- Begin Forwarded Message --- Date: Fri, 16 May 2003 08:04:43 EDT From: EmmaJoyHunter@... Subject: Re: New member <fwd> Sender: EmmaJoyHunter@... To: tetheredspinalcord Reply-To: tetheredspinalcord Message-ID: Dear Nina I will try that with some of my friends. It sounds like a good idea. I have a lot of very good friends but I think it is because we are so young that the find it more difficult to understand. Having TCS has made me grow up a lot more quickly and I sometimes feel like there is a huge gap between us. Things like having my operation on the day of the end of A-level party and having a hospital appointment on the results day when they were all at school together really brought that home to me. I went to the GP today and he perscribed me ZYDOL 50mg. Have you used this before? I forgot to mention that I have an allergy to codine so some of the drugs that were suggested wouldn't have been appropriate. You are right, it is terrible waiting for appointments! Particularly since you don't know what sort of deterioration is taking place in the mean time. My mum rang up about my MRI results again and apparently the scans are sitting there but haven't been read yet. Every day this week she has called and they keep saying it would be done today. I am so frustrated and upset!! The secretary has taken a note that it is important yet they still dont do what they say they will. Sometimes doctors etc can be so apathetic. It has been five weeks now and I can't get onto the waiting list until it has been sent to the consultant. Anyway thanks for the advice about dealing with other people. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Nina, I take Ultram for fibromyalgia. It is a non-narcotic analgesic. Some side effects may include drowsiness, ataxia, etc. A good place to find out about meds is to go to www.webmd.com It is a site that has lots of good info about conditions, treatments, and drugs. Hope this helps. Penny Re: New member <fwd> Sender: EmmaJoyHunter@... To: tetheredspinalcord Reply-To: tetheredspinalcord Message-ID: Dear Nina I will try that with some of my friends. It sounds like a good idea. I have a lot of very good friends but I think it is because we are so young that the find it more difficult to understand. Having TCS has made me grow up a lot more quickly and I sometimes feel like there is a huge gap between us. Things like having my operation on the day of the end of A-level party and having a hospital appointment on the results day when they were all at school together really brought that home to me. I went to the GP today and he perscribed me ZYDOL 50mg. Have you used this before? I forgot to mention that I have an allergy to codine so some of the drugs that were suggested wouldn't have been appropriate. You are right, it is terrible waiting for appointments! Particularly since you don't know what sort of deterioration is taking place in the mean time. My mum rang up about my MRI results again and apparently the scans are sitting there but haven't been read yet. Every day this week she has called and they keep saying it would be done today. I am so frustrated and upset!! The secretary has taken a note that it is important yet they still dont do what they say they will. Sometimes doctors etc can be so apathetic. It has been five weeks now and I can't get onto the waiting list until it has been sent to the consultant. Anyway thanks for the advice about dealing with other people. Emma Quote Link to comment Share on other sites More sharing options...
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