Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Hello Irene TSH is short for Thyroid Stimulating Hormone. This is a hormone secreted by the pituitary gland when it recognises that your thyroid gland is not producing enough thyroxine (T4) or enough triiodothyronine (T3). The less T4 and T3 your thyroid is secreting the higher your TSH will be. The higher the T4 and T3 secretion will show your TSH to be very suppressed. It is best to have a TSH of 1.00 or less to feel healthy and this is where you should try to get it. All your blood, urine, saliva or whatever tests that you have had done through the NHS are yours by law. Your doctor or receptionist cannot refuse you them. If there is a lot you need, they may charge you for photocopying, but often your doctor will be happy to give you them off his computer screen. Always though, remember to get the reference range for each test done, as these differ with different laboratories throughout the UK. You are also entitled to all the information that is in your medical notes and you would need to write a letter to your GP or Head of practice to give them notice - and they can charge you for this service too. Most thyroid nodules/cysts are not cancers. In fact, only about 5/10% of thyroid nodules are malignant. The rest are fluid filled sacks or cysts, benign tumours that are not cancers, or outgrowths of otherwise basically normal thyroid tissue called colloid nodules. A small percentage of benign thyroid tumours are overactive - making too much thyroid hormone. These tumours are very unlikely to be cancers. What is the question you need an answer to about thyroxine? Luv - Sheila Hi , many thanks for the e-mail, it will not surprise you that I have no idea what TSH is but I am going to look through the archives. I did not know that I could ask for my test results? are most doctors/specialists happy to give them? Also if any one can let me know re the thyroxine or the possibility of the cyst turning into a tumor I would be most grateful. I can see I have a lot to learn Irene __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi Irene - your GP CANNOT refuse you access to your blood results, or access even to your medical records. The reason why you need your thyroid function tests are, quite frankly, nothing whatsoever to do with him and you would be in your place to tell him so if you were feeling bloody-minded, but don't do this, you need to see him another day. However, just write him a short letter, something along the lines of " Dear Dr *****, please will you let me have a copy of my last blood results and especially my thyroid function tests together with the laboratory reference range for each test. I am enclosing a stamped address envelope for your convenience. Your sincerely ****** " If he still refuses, then have a word with your Practice Manager. luv - Sheila I have phoned my GP re getting my results and it was like the third degree, why did I want them, when I explained why I wanted them I got a long winded reason why I should not use web sites ectra and he did not give them to me!. I am a bit stuck here as they are the only doctors for miles around. I have a gp appointment tomorrow and I will try again. I will have a look at the files now. many thanks for helping out a newbie Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 …and last year, PALS accepted TPA-UK into the circle as being a thyroid support web site and forum - we are now on their web site. Tis good that the NHS are beginning to recognise the value of such organisations as TPA. Luv - Sheila Hi Irene PALS ~ Patient Advice and Liaison Service via your PCT..... they can often resolve 'little' things like that without the doctor knowing who might have complained (?anon). best wishes Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi there Irene, many people don`t no that cancer is an autoimmune problem, so as you have this in your family , there is a good chance that you have an autoimmune problem as well. it could be hypo, or it could be some thing else,. the only way is an RT3 and TPOab tests.hope this helps you .angel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 You’re dealing with a lot; as most people in this group are. Because of my own ADD, I encourage you to keep yourself in PACE. I know Svetlana uses PACE a the beginning of each day and midday to help everyone stay focused and open to learning. I have found that when I’m in PACE, my own ADD fades because I have both sides of my system open for processing. It’s a huge help. Good journey. Joni in Minnesota From: [mailto: ] On Behalf Of sweetladyruck Sent: Sunday, February 22, 2009 8:00 PM Subject: New Member Hi Everyone, I am a new member who just finished the 16-hour Tactile Integration® Course taught by Svetlana in Kelowna BC. I took the course because I am the Mom of an almost 11 (in 3 days!) son who has Cerebral Palsy, ADHD, Behaviour Control problems, is Sensory Integration Dysfunctional, has Emotional Issues and also has a very advanced (genius) IQ. As for myself, I just am ADD, have Sensory Issues, Hormonal Imbalances and Clinical Depression. We have done sensory diets with Cole in the past (pre-kindergarden) and have worked with stroking in the facial area to aid with his speech. I am looking forward to a new part of our journey and am really excited to see where it will take us. . --- Get FREE High Speed Internet from USFamily.Net! --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 What type of thyroid medication are you taking. Your bone pain may be related to not getting enough thyroid hormone. It is quite common as most of us are put on Synthroid or Levoxyl or another t4 only medication. For thyroid cancer you need iodine. Large amounts of it. At least 50 mgs. I know because it saved my life from papillary thyroid cancer after 3 failed RAI's. Scanning repeatedly with RAI is insane. It requires that you come off your meds for 6 weeks and then scan and then go back on. It takes 3 mos or more to stabilize again. Did anyone take a thyroglobulin measurement pre-RAI on you? This is your cancer marker and can be used to monitor your thyroid cancer status. Please see my website at www.naturalthyroidchoices.com Read my full thyroid cancer story to see what I did to heal. new member Hello,I'm a new member and would like to get any advice on how to deal with emotional roller coaster while balancing between work and being sick.I have metastatic papillary carcinoma and had a total thyrodectomy with somelymph nodes on last September and had I 131 treatment on last December. It took almost 6 months for me to go back to work from the recovery. I'm going to have a second scan and treatment this summer. I have lost almost 40 Lbs and always feels tired and weak in general.I've experienced nerve pain and bone pain which I still didn't get a diagnosis from 2 neurologists yet. I'm exhausted to see doctor to doctor to look for the answer for the new symptoms. Since I started a new medication to relieve my pain which makes me drowsy, I'm experiencing difficulty on balancing work and being sick.. I have missed already so many days from work and I'm frustrated even though people at work has been supporting me great. I can't thank enough but when I feel I'm making everyone at work worry about me, I found out myself getting stress from the fact. I understand that the papillary cancer is treatable and I don't worry about the cancer itself but there are many other things are following up like family, friend, work, getting support, emotion, spirit,.... Living with cancer is very complicated process. If I can hear from people who has similar experience with me, it will be a great comfort. Thanks.-Hearyun Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 Hi ,Thanks for your advise. I'm taking levothyroxine 100mcg plus Cytomel 12.5 mg twice a day. My TSH on 2/09 was lower than 0.02 undetectable. Yes they did TG before and after. since I have TG antibody, Tg level which is very low doesn't guarantee I'm a cancer free. I am more frustrated with other pains and work with pain. I can't take Neurontin or Ultram during the day time because it makes me drowsy. My neurologist changed to Lyrica hoping less side effect. I'll read your website and contact you if more question. Thanks-HearyunFrom: ladybugsandbees <ladybugsandbees@...>iodine Sent: Friday, April 10, 2009 2:10:26 PMSubject: Re: new member What type of thyroid medication are you taking. Your bone pain may be related to not getting enough thyroid hormone. It is quite common as most of us are put on Synthroid or Levoxyl or another t4 only medication. For thyroid cancer you need iodine. Large amounts of it.. At least 50 mgs. I know because it saved my life from papillary thyroid cancer after 3 failed RAI's. Scanning repeatedly with RAI is insane. It requires that you come off your meds for 6 weeks and then scan and then go back on. It takes 3 mos or more to stabilize again. Did anyone take a thyroglobulin measurement pre-RAI on you? This is your cancer marker and can be used to monitor your thyroid cancer status. Please see my website at www..naturalthyroidc hoices.com Read my full thyroid cancer story to see what I did to heal. new member Hello,I'm a new member and would like to get any advice on how to deal with emotional roller coaster while balancing between work and being sick.I have metastatic papillary carcinoma and had a total thyrodectomy with somelymph nodes on last September and had I 131 treatment on last December. It took almost 6 months for me to go back to work from the recovery. I'm going to have a second scan and treatment this summer. I have lost almost 40 Lbs and always feels tired and weak in general.I've experienced nerve pain and bone pain which I still didn't get a diagnosis from 2 neurologists yet. I'm exhausted to see doctor to doctor to look for the answer for the new symptoms. Since I started a new medication to relieve my pain which makes me drowsy, I'm experiencing difficulty on balancing work and being sick.. I have missed already so many days from work and I'm frustrated even though people at work has been supporting me great. I can't thank enough but when I feel I'm making everyone at work worry about me, I found out myself getting stress from the fact. I understand that the papillary cancer is treatable and I don't worry about the cancer itself but there are many other things are following up like family, friend, work, getting support, emotion, spirit,.... Living with cancer is very complicated process. If I can hear from people who has similar experience with me, it will be a great comfort. Thanks.-Hearyun Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2009 Report Share Posted April 29, 2009 Dear , I am a little behind on checking my email and when I saw that you had joined the group I thought that I needed to make sure to congrats on joining the group. I am a single mother of two beautiful girls. I was originally diagnosed with Reiter's Syndrome and later with Ankylosing and then later it was Ankylosing with Fibro tendencys on top. But, now since I had a MRI done today it is looking that I may have more a Fibro issue than anything. I will tell you like anyone here can tell you, that it is very frustrating to have any of these conditions. For one thing, many of us have gone years with out being diagnosed and was told over and over that it was all in our heads, nothing was wrong with us, and so on. I know that personally since joining the group a couple of years ago if I remember correctly, I have greatly enjoyed reading the postings listed here because I don't feel so alone. Plus I am able to read about the newest treatments around. Finding this site has been a blessing indeed. Currently I am having a flare up. My doctor injected me four times in my lower back yesterday with what they call trigger shots which are steriod shots to the actual pin point of the pain. The last time that he did this, it worked. However, this time is hasn't so now it is more like I need time to rest and to recover. Kinda hard to do that when you are a student along with being a single parent. However, I am happy to report that I have decided that it is time for me to try to reapply for my disability again. I had a disability lawyer say that normally they do first time apps turn downs but currently that they are not turning down people on the first go this time. However, from what I was told it doesn't last very long so everyone out there that has applied before and got turned down, this may be the best time to reapply for those benefits. Your friend, Barbara > > Hey my name is Jennie. I am 27 years old and a mother of four beautiful children! I started having some joint pain last fall but put going to the Dr off until January. After some x-rays and blood work, I was sent to a Rheumy who then did more x-rays and blood work. I tested positive for the HLA-B27 antigen. I also had to do a lung function test which came back abnormal so I am seeing a lung specialist as well. My Rheumy didn't really give me a specific name for what have, just spondyloarthropathy. I am so glad to meet people who understand what I am feeling! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2009 Report Share Posted May 25, 2009 Well Hi there Sue and welcome, you are in for a right treat as you enjoy all the info here where you can ask questions and communicate with others who have walked the same path as yourself. Can I suggest you also have a look at the www.tpa-uk.org.uk were you will find even more 'goodies' as well as the files section. F > > Hi I'm Sue and I'm from South Yorkshire. I found this site through a Google search whilst I was looking for information about international postal charges imposed by Parcelforce on my package of Armour Thyroid from USA. This is the first time in two years that this has happened so I guess I was just lucky. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2009 Report Share Posted May 25, 2009 Yes indeed, welcome. The support and advice I have recieved here has been second to none its a fantastic group. People caring and contributing info, Enjoy reading all the info hon lotsa luv Dawnx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Hi Sheila I guess you could call me Suzie B if there are too many Sue's on here. Thanks for your warm welcome and I'll try to answer some of your questions. I take 2grains of Armour per day but my GP told me at my last review that my thyroid function was on the low side and I should increase my medication. I asked if he thought I should take a little Levothyroxine in addition to the Armour and he was horror struck. He said that there was no way he would take responsibility for that and that I should take either one or the other. He typically didn't elaborate but I suspect he was referring to T4 as this is all they test for. I know that T4 can be low if T3 is elevated but I daren't tell him that this is normal so I began to take 1 grain extra just at weekends but suffered from palpitations so stopped. My hair remains much thicker than it was when I was on Levothyroxine - I tend to use this along with tiredness as a general indicator. If my hair falls out and I'm shattered I must be low! I know this is a haphazard state of affairs but to be honest I daren't push it with my doctor for extra tests as he is quite uncooperative. Is anyone else scared of their GP? It is interesting that you mention adrenal matters because I have long thought that this may be a problem for me as I have suffered almost constant stress for many years now. To be quite honest I think this may have been instrumental in my developing thyroid disease and type II Diabetes. Is it expensive to get adrenal function checked and to treat it if this is found to be a problem? I doubt my GP would prescribe me anything even if I presented him with a private diagnosis. I realise that this is completely wrong to be so afraid of your GP but if I try to suggest anything to him he gets on his high horse and I end up feeling bad for mentioning it. He is definitely a control freak - he is the professional and what would a mere mortal like me know! Does anyone have any suggestions as to how to handle him? Also can anyone explain why I sweat such a lot? Does anyone else suffer with this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hi Suzie B There is a set amount of T4 and t3 in Armour, and it doesn't always work for everybody - like a size 5 shoe doesn't fit everybody. Some of us do need to take a little more T3 and others (like me) need a little more T4. I add 25 mcgs T4 to my Armour and find that if I don't take this T4 (even such a teeny amount) I start to get back some symptoms. Obviously, your GP knows little about Armour, so I would do the necessary reading and look after yourself. Your TFT's after using Armour Thyroid usually show a completely suppressed TSH, a Free T4 in the upper third of the reference range, the Free T3 at the top of the reference range. Obviously, your GP is not going to give you extra of the synthetics, so you might need to do the experiment yourself but having to buy extra thyroid hormone replacement because your GP doesn't know anything about it is a bit pathetic, and very unfair on you. You are probably suffering with low adrenal reserve or candida, or you could be low with your minerals and that is why you are unable to increase your Armour - so do get the minerals and vits checked through your GP. The 24 hour adrenal profile test costs £70 so try to beg, borrow or steal to get this done. it really is invaluable. You can treat any low adrenal reserve yourself and we have details of this in our files. Do you buy your Armour or does your doctor prescribe it for you? Don't be afraid of your GP - honestly, soon, you will know more about your condition that he does - and learn to be assertive. If you have any questions for him, write them down and don't budge until you get answers - your doctor is there to help you, not to cause you distress and/or problems. Luv - Sheila I realise that this is completely wrong to be so afraid of your GP but if I try to suggest anything to him he gets on his high horse and I end up feeling bad for mentioning it. He is definitely a control freak - he is the professional and what would a mere mortal like me know! Does anyone have any suggestions as to how to handle him? Also can anyone explain why I sweat such a lot? Does anyone else suffer with this? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.339 / Virus Database: 270.12.37/2130 - Release Date: 05/25/09 18:14:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 You get a lot more information about the actual results from Genova Diagnostics I have now found, that is why I recommend Genova over NPTech or Lab21 as they are now. Luv - Sheila You asked: Is it expensive to get adrenal function checked and to treat it if this is found to be a problem? £69 from; http://www.lab21.com/index.php for the salivary adrenal test £70 from Genova And Nutri Adrenal Extra is the most favoured treatment to begin with I think, not too expensive: http://www.yournutritionshop.co.uk/shopexd.asp?id=657 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 > > You get a lot more information about the actual results from Genova > Diagnostics I have now found, that is why I recommend Genova over NPTech or > Lab21 as they are now. > > > > Luv - Sheila > >I have the test kits now (urine T3/T4 and saliva for adrenal)which I will be sorting out early next week - I have been looking on the Genova website which is very informative and gives very comprehensive information, including a sample results report for each test - looking at even the example gave me confidence that it is a document I can take to my GP to read when I have the results and perhaps he will take note! The address of the website is here - http://www.genovadiagnostics.com/ After my tests are done I can finally start the supplements I have been given - Candizyme for candida; Livatone Plus Powder for my liver; Vitamin C Powder Bio-Acidophilus for the digestive system; and TNT (I was joking to the girls at work that I needed some dynamite to get my digestive system working and I couldn't believe it when this was recommended to me!! :-)) Mycotaki (not sure what that is for) Hopefully in a couple of weeks I will start feeling a wee bit better - I really am tired of feeling and looking so terrible at the moment! Anyhow as Sheila says I would definitely recommend Genova over the other two suppliers - and good luck to everybody! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 > > Hi all, My name is and I am a 22 year old female. I just got diagnosed with mild scoliosis last week that I guess was missed as a teenager. I remember my doctor thinking possible scoliosis as a teenager because I was having repeated ankle sprains and instability and had to brace my right ankle throughout my teenage years to prevent reinjury but I don't think it was severe enough to catch without a xray. Last November I sprained my left knee, left wrist, left hip, and mid thoracic back, and now have bursitis and piriformis syndrome(a form of sciatic)in my hip and chondromalacia in my left knee. I had an xray of my thoracic spine because I am still having pain and he said it shows some hardening and a mild scoliosis and he put me on ibuprofen 800mg 3x/day for two weeks and he wants me to go to physical therapy for a few weeks and come back and see him. He also said I have hypermobility syndrome. > > I am really struggling with all these diagnosis all at the same time. Does anyone else have all these together? I am also struggling with the pain from everything. The last seven months, I have been in so much pain I can't hardly sleep or do anything. > > Does anyone have any suggestions for the pain? Do you think all these things are possibly linked to the scoliosis or separate problems? > > Thanks in advance, > >hi,im diana,18.i have scoliosis too.i've had scoliosis for 3years nw. besides,i also have smthing called juvenile rheumatoid arthritis on 2 of my fingers which is bothering me much when i write.nw the lastest is my sprain right arm and my left leg is giving sm problem.whenever i walk,it tends to shift to the right,and its really hurting.i usually all these pains together,and its really bad.im sorry you have to go through all these. sometimes i cant sleep..i've got sm suggestions for you.its important that you go for your physio therapy.besides,try breathing exercises,relax and get a lot of rest.im sorry.bt im not sure if all of your pain is related to scoliosis or not.do take good care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 -Hi , Thanks for your reply. It is nice to hear from someone who is close to my age. I hope your sprain, left leg, and everything feels better soon. > >hi,im diana,18.i have scoliosis too.i've had scoliosis for 3years nw. besides,i also have smthing called juvenile rheumatoid arthritis on 2 of my fingers which is bothering me much when i write.nw the lastest is my sprain right arm and my left leg is giving sm problem.whenever i walk,it tends to shift to the right,and its really hurting.i usually all these pains together,and its really bad.im sorry you have to go through all these. > sometimes i cant sleep..i've got sm suggestions for you.its important that you go for your physio therapy.besides,try breathing exercises,relax and get a lot of rest.im sorry.bt im not sure if all of your pain is related to scoliosis or not.do take good care. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 You should go to a rheumatoidologist ________________________________ From: cntrygrlrak <cntrygrl86@...> Scoliosis Treatment Sent: Wednesday, June 10, 2009 7:20:19 PM Subject: Re: New Member -Hi , Thanks for your reply. It is nice to hear from someone who is close to my age. I hope your sprain, left leg, and everything feels better soon. > >hi,im diana,18.i have scoliosis too.i've had scoliosis for 3years nw. besides,i also have smthing called juvenile rheumatoid arthritis on 2 of my fingers which is bothering me much when i write.nw the lastest is my sprain right arm and my left leg is giving sm problem.whenever i walk,it tends to shift to the right,and its really hurting.i usually all these pains together,and its really bad.im sorry you have to go through all these. > sometimes i cant sleep..i've got sm suggestions for you.its important that you go for your physio therapy.besides, try breathing exercises,relax and get a lot of rest.im sorry.bt im not sure if all of your pain is related to scoliosis or not.do take good care. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 Hi, , A doctor never said I had hypermobility syndrome, but if one asked anyone around me from my 20's to 40, they would say I had an unending supply of energy, hyperenergetic some said. Syndrome? I don't know. lj CMT2 From: cntrygrlrak <cntrygrl86@...> Subject: New Member Scoliosis Treatment Date: Monday, June 8, 2009, 2:42 PM Hi all, My name is and I am a 22 year old female. I just got diagnosed with mild scoliosis last week that I guess was missed as a teenager. I remember my doctor thinking possible scoliosis as a teenager because I was having repeated ankle sprains and instability and had to brace my right ankle throughout my teenage years to prevent reinjury but I don't think it was severe enough to catch without a xray. Last November I sprained my left knee, left wrist, left hip, and mid thoracic back, and now have bursitis and piriformis syndrome(a form of sciatic)in my hip and chondromalacia in my left knee. I had an xray of my thoracic spine because I am still having pain and he said it shows some hardening and a mild scoliosis and he put me on ibuprofen 800mg 3x/day for two weeks and he wants me to go to physical therapy for a few weeks and come back and see him. He also said I have hypermobility syndrome. I am really struggling with all these diagnosis all at the same time. Does anyone else have all these together? I am also struggling with the pain from everything. The last seven months, I have been in so much pain I can't hardly sleep or do anything. Does anyone have any suggestions for the pain? Do you think all these things are possibly linked to the scoliosis or separate problems? Thanks in advance, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 Hi, again, , I have re-read your note... Over the years, several 'therapies' were tried to straighten my scoliosis. At 14yo, when it was discovered, an ortho put a plaster body cast on my trunk, which I wore for four months until it was cut off. Result: even shoulders, over the next four months, the curves returned as bad as they were before. Physical therapy. Result: made trunk muscles stronger, curves progressed slower, but they still progressed. Chiropractic. Result: straigtened the curves by about 10 to 15% at the end of two months of weekly treatments, curves returned soon after to the same degrees as before, still progressing. Physical therapy in a pool: strengthed strength of the trunk, arms and legs, progressed faster due to one exercise I did where I bent to each side for 30 sec. 10 reps for two years. I SHOULD have been doing bends twice as many INTO the curve (opposite direction from the biggest 'C'). 2002: anterior/posterior spinal fusion T2 to L5. Result: stopped progression, wonderful correction due to my excellent physical condition and flexibility. ONLY surgery will stop progression for sure. Lj CMT2 From: cntrygrlrak <cntrygrl86@...> Subject: New Member Scoliosis Treatment Date: Monday, June 8, 2009, 2:42 PM Hi all, My name is and I am a 22 year old female. I just got diagnosed with mild scoliosis last week that I guess was missed as a teenager. I remember my doctor thinking possible scoliosis as a teenager because I was having repeated ankle sprains and instability and had to brace my right ankle throughout my teenage years to prevent reinjury but I don't think it was severe enough to catch without a xray. Last November I sprained my left knee, left wrist, left hip, and mid thoracic back, and now have bursitis and piriformis syndrome(a form of sciatic)in my hip and chondromalacia in my left knee. I had an xray of my thoracic spine because I am still having pain and he said it shows some hardening and a mild scoliosis and he put me on ibuprofen 800mg 3x/day for two weeks and he wants me to go to physical therapy for a few weeks and come back and see him. He also said I have hypermobility syndrome. I am really struggling with all these diagnosis all at the same time. Does anyone else have all these together? I am also struggling with the pain from everything. The last seven months, I have been in so much pain I can't hardly sleep or do anything. Does anyone have any suggestions for the pain? Do you think all these things are possibly linked to the scoliosis or separate problems? Thanks in advance, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Thanks LJ CMT2, My doctor is not recommending any surgery or other treatment right now. The scoliosis is mild and I am past my growth spurt so he just wants to monitor it for now. I go back to see him at the end of the month. > >2002: anterior/posterior spinal fusion T2 to L5. > Result: stopped progression, wonderful correction due to my excellent physical condition and flexibility. ONLY surgery will stop progression for sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Hi, , Monitoring is good! I was monitored once a year after 20yo. Every time I had an chest xray for my lungs (which was often) I'd see alarm in their faces when they put the films up on those lighted xray windows and I would say, " That's ok. I know about it. I'm comfortable. " Then, they would nod and begin to talk about the reason I was in for the xray. lj CMT2 From: cntrygrlrak <cntrygrl86@...> Subject: Re: New Member Scoliosis Treatment Date: Sunday, June 14, 2009, 10:02 PM Thanks LJ CMT2, My doctor is not recommending any surgery or other treatment right now. The scoliosis is mild and I am past my growth spurt so he just wants to monitor it for now. I go back to see him at the end of the month. > >2002: anterior/posterior spinal fusion T2 to L5. > Result: stopped progression, wonderful correction due to my excellent physical condition and flexibility. ONLY surgery will stop progression for sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 Hi, Thanks so much for the welcome! I have been reading the posts, getting adjusted. I am happy for you getting a dog to help you! I have been keeping up with the possible meds which may be taken off the market. I wish people would realise we need them to get around as best as possible. I think we all need time to vent now and again!! I know my day will come! Thanks again for the welcome! Peace, Robin On Sat, Jul 11, 2009 at 4:50 PM, midwestscoli <barbara.stacey@...> wrote: Robin,Welcome to the group. This is a great place for scoliosis patients. You can ask questions and everyone is very helpful. Once in a while when I get particularly frustrated it's a good place to vent. Nobody else really understands what we live with every day. , I am keeping up with the news about the FDA possibly limiting the use of pain medications. It's scary. Next time I see Dr. Long I will ask her if she knows what's going on. -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Welcome to the group, Robin. We are glad to have you. Many of us have had flatback revision surgeries, some more successful than others. I can relate to all the symptoms you describe. By the time I got to surgery, I was forced to walk with my torso at a 90-degree angle to the groud. My life had essentially become unlivable, and the surgery gave my life back to me. If you have some time, you could browse through the message-archives at the Feisty website and find lots of information on people's surgical experiences. You could search for specific subjects using the search function at the site, although this is not the best and is working to improve it. Again, welcome. I hope you enjoy the group and perhaps get some useful information from exchanging posts with us. You -- and any other new members -- should also have received a longish document via email, introducing our group and explaining our rules and policies. Would you please let me know if this did not reach you? Best, > > Hi, > > Just joined the group and wanted to say Hi. > > I had 2 failed back surgeries as well as serious spasms....I was recently dx with flatback. My clothes don't fit, I find it hard to stand for 5 minutes at the most and have terrible spasms. I guess you can relate. Has anyone had corrective surgery and did it help?? > > Any info would be great! > > Peace, > > Robin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 A warm welcome to you, Tonya. we're glad to have you as a member. I hope you can find some useful information about revision surgeons. It sounds as if you are already knowledgeable about the importance of finding someone specifically qualified to perform flatback revision surgery. Congratulations on your conscientious research. The name " Horton " seems to ring a bell, but I don't know how much experience members may (or may not) have had with him. As you probably know, we do have a partial list of revision surgeons among the resources at our website. I am always hopeful that more members will post their experiences with particular doctors. Looking forward to having you in the group, > > Hi everyone- > > I recently discovered this group and I am excited about communicating with others who have similar problems. My original surgery was done by Dr. in 1983 at University Hospital in Augusta Georgia. I was diagnosed with flatback last fall. Since then, I have been researching flatback and revision surgery. I have an appointment for a consultation with Dr. Horton at Emory University on August 10th. I would love to hear from anyone who has had experience with Dr. Horton. There are limited revision specialists in this area of the country. > > Looking forward to being part of this group! > > Tonya > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Hi , Thanks so much for the welcome. I am wondering if the surgery helped everyone even it was just lessening the pain and spasms. I hope I am allowed to ask this. I did read the intro here and thanks for reminding me of the many files here. My torso is about 45 but it's getting worse quicker than it was. I can stand about 5 minutes before the spams become way too severe. My pain specialists don't really know what it is but are getting with my surgeon to learn. I am so glad your life is so much better. I look forward to hearing from you again. Thanks for the warm welcome! Much Peace, Robin On Mon, Jul 13, 2009 at 4:10 PM, Rasche <elizabethrgonzalez@...> wrote: Welcome to the group, Robin. We are glad to have you.Many of us have had flatback revision surgeries, some more successful than others. I can relate to all the symptoms you describe. By the time I got to surgery, I was forced to walk with my torso at a 90-degree angle to the groud. My life had essentially become unlivable, and the surgery gave my life back to me. If you have some time, you could browse through the message-archives at the Feisty website and find lots of information on people's surgical experiences. You could search for specific subjects using the search function at the site, although this is not the best and is working to improve it. Again, welcome. I hope you enjoy the group and perhaps get some useful information from exchanging posts with us. You -- and any other new members -- should also have received a longish document via email, introducing our group and explaining our rules and policies. Would you please let me know if this did not reach you? Best, > > Hi,> > Just joined the group and wanted to say Hi.> > I had 2 failed back surgeries as well as serious spasms....I was recently dx with flatback. My clothes don't fit, I find it hard to stand for 5 minutes at the most and have terrible spasms. I guess you can relate. Has anyone had corrective surgery and did it help?? > > Any info would be great!> > Peace,> > Robin> -- Live the life you have imagined!HD ThoreauThings do not change. We change. HD ThoreauThere is life after PTSD!!! Life is what you make of it!Waneeshee.......may the way be beautiful for you Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.