Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Yes, I know that what you're saying is correct. I found out that my body just rejects whatever it seems to feel is not good for it. So far it's been on track, even though it gets irritating when I'd like to see improvement in my conditions. Oh well, it is what it is and I just have to deal with my body carefully. The one good thing is that I don't get emotionally involved with treatments of any kind. If it works, good, if not, I stop it. I can't tell you how many things I've stopped both allopathic and alternative. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > LOL, that's probably right. With me, the chemical sensitivities that I > have are really bad. My cardio recently gave me two perfectly natural > things l-carnitine and d-ribose.... In addition to the reported side effects, l-carnitine interferes with your thyroid meds. Did your cardio warn you about that? Since d-ribose is a sugar, diabetics need to avoid it. Both of these " natural " supplements have digestive upsets and diarrhea as known side effects. " Natural " does not mean harmless. There are lots of things in nature that would consider us " lunch. " Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 On 2/14/2011 5:50 PM, Roni Molin wrote: > So how is a patient who is going to get an MRI to know > which form has the lowest risk? Someone in Europe published a list with a risk assessment for each of the various compounds. Only a subset of these are used in the U.S. Your doctor should be able to explain the tradeoffs. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Thanks Chuck. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > So how is a patient who is going to get an MRI to know > which form has the lowest risk? Someone in Europe published a list with a risk assessment for each of the various compounds. Only a subset of these are used in the U.S. Your doctor should be able to explain the tradeoffs. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I found this article re: gadolium. http://www.mhra.gov.uk/Safetyinformation/DrugSafetyUpdate/CON087741 <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > So how is a patient who is going to get an MRI to know > which form has the lowest risk? Someone in Europe published a list with a risk assessment for each of the various compounds. Only a subset of these are used in the U.S. Your doctor should be able to explain the tradeoffs. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 On 2/14/2011 6:54 PM, Roni Molin wrote: > > I found this article re: gadolium. > > http://www.mhra.gov.uk/Safetyinformation/DrugSafetyUpdate/CON087741 That's the group: European Committee for Medicinal Products, and the list of gadolinium agents used over there. Of these nine, the U.S. FDA has only approved five: Magnevist, MultiHance, Omniscan, OptiMARK, and ProHance. Note that we have all three of the high risk category, and only one each of the medium and low risk. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I'm going to save the study and this post from you, just in case I ever need them to refer to as to what I should ask for. Thanks again. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > I found this article re: gadolium. > > http://www.mhra.gov.uk/Safetyinformation/DrugSafetyUpdate/CON087741 That's the group: European Committee for Medicinal Products, and the list of gadolinium agents used over there. Of these nine, the U.S. FDA has only approved five: Magnevist, MultiHance, Omniscan, OptiMARK, and ProHance. Note that we have all three of the high risk category, and only one each of the medium and low risk. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Chuck, Your Mom having had petite mal seizures then grand mal later in life is very much how I have seizures also. I had petite mal as an infant due to a high fever. At 17 years old, I had a major surgery that cured the seizures until 1996. Since then I have grand mals once in a while and I still have the petit mals often. > > > > > > I don't mean to go onto another subject. Concerning the MRI I know it is > > not always accurate because 15 years ago I had tests to see if I have > > epilepsy and the tests showed nothing resulting to it.... > > There are other things that can cause seizures besides overt structural > injuries that would show up on an MRI. My mom had petite mal attacks > subsequent to a car accident in her childhood. As she aged, these > eventually progressed to grand mal on occasion, but they could never > find a structural issue. Like her thyroid meds, the ones she took to > control the epilepsy were life long. > > Chuck > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 What else they use for seizures is EEG (ElectroEncopheloGram). The spelling may not be correct. That too, I have often experienced as inaccurate. > > Well, I hope I never need it, but will keep it in mind. Chuck, if I > > should have to go for an MRI for something, I know the gadolinim is not > > good. What else do they use if they want contrast and what do you think > > about it? > > As usual, it is a " risk, " rather than a definite harm. If you really > need the MRI, the benefit of the gadolinium contrast agent will almost > certainly outweigh the risk. > > Chuck > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I've had an EEG, and I'm curious, in what way was the test innacurate and how did you discover this innacuracy? <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: Louise <mtt5nf@...> Subject: Re: surgery hypothyroidism Date: Tuesday, February 15, 2011, 3:46 AM What else they use for seizures is EEG (ElectroEncopheloGram). The spelling may not be correct. That too, I have often experienced as inaccurate. > > Well, I hope I never need it, but will keep it in mind. Chuck, if I > > should have to go for an MRI for something, I know the gadolinim is not > > good. What else do they use if they want contrast and what do you think > > about it? > > As usual, it is a " risk, " rather than a definite harm. If you really > need the MRI, the benefit of the gadolinium contrast agent will almost > certainly outweigh the risk. > > Chuck > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 The report the Dr. read from the results of the EEG test did not always show on the report that I had many seizures each week. Often a day before the test the Dr. would prefer that I don't take my meds so that there would be a greater chance of a seizure happening during the test. The EEG has a light constantly flashing and the nurse would repeatedly say open your eyes, close your eyes, in the hopes that the flashing light would cause a seizure to happen, then, they will see accurately what kind of seizures I have. > > > Well, I hope I never need it, but will keep it in mind. Chuck, if I > > > should have to go for an MRI for something, I know the gadolinim is not > > > good. What else do they use if they want contrast and what do you think > > > about it? > > > > As usual, it is a " risk, " rather than a definite harm. If you really > > need the MRI, the benefit of the gadolinium contrast agent will almost > > certainly outweigh the risk. > > > > Chuck > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Louise, You wrote: > ...At 17 years old, I had a major surgery that cured the > seizures until 1996. Since then I have grand mals once in a while and I > still have the petit mals often. That can be a lot to contend with. Do you control it with meds? Somehow I have a hard time imagining a physician seriously suggesting you imagine having seizures, just because the MRI was blank. I think that is actually the more common outcome. And, when the instrument does find something, it is often inoperable. Are you sure he wasn't pulling your leg? Some people think they can be funny in very serious situations, as long as they are not the ones threatened. My doctor jokes with me all the time, but he actually has a great sense of humor. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Louise, You wrote: > What else they use for seizures is EEG (ElectroEncopheloGram). The > spelling may not be correct. That too, I have often experienced as > inaccurate. Yes, there are several characteristic types of brain waves that indicate either that you are prone to seizures or just had one. The limitation is that, like MRI, it is possible for you to have intermittent events with nothing that registers on the EEG until you have an active seizure. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 I think I understand. I have atrial fibrillation, and unless I'm in the middle of an attack there is nothing to see or feel. I don't think the tests are inacurate, I just think they are not picking up the seizures when they are happening. I think, if you don't live alone that I would have someone call an ambulance when you get a seizure so they can see it when it's happening. They have equipment on the ambulance. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: Louise <mtt5nf@...> Subject: Re: surgery hypothyroidism Date: Tuesday, February 15, 2011, 2:25 PM The report the Dr. read from the results of the EEG test did not always show on the report that I had many seizures each week. Often a day before the test the Dr. would prefer that I don't take my meds so that there would be a greater chance of a seizure happening during the test. The EEG has a light constantly flashing and the nurse would repeatedly say open your eyes, close your eyes, in the hopes that the flashing light would cause a seizure to happen, then, they will see accurately what kind of seizures I have. > > > Well, I hope I never need it, but will keep it in mind. Chuck, if I > > > should have to go for an MRI for something, I know the gadolinim is not > > > good. What else do they use if they want contrast and what do you think > > > about it? > > > > As usual, it is a " risk, " rather than a definite harm. If you really > > need the MRI, the benefit of the gadolinium contrast agent will almost > > certainly outweigh the risk. > > > > Chuck > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 I may have to have arch reconstruction (tendon transfer to rebalance foot) and/or Talo-Navicular Fusion surgery. I am in the information gathering phase right now and would appreciate any information or experience anyone may have had with or about these surgeries. I also would appreciate any information on surgeons who are experienced with these surgeries and with CMT especially. Thanks in advance for your help and comments. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 Dr. Sigvard Hansen & Crew http://seattletimes.nwsource.com/html/pacificnw/2008881714_pacificpfootdoc22.htm\ l  http://uwmedicine.washington.edu/Patient-Care/Our-Services/Medical-Services/Foot\ -and-Ankle/Pages/default.aspx From: Kay Hinds <mkkhinds@...> Subject: surgery Date: Thursday, March 31, 2011, 9:13 AM  I may have to have arch reconstruction (tendon transfer to rebalance foot) and/or Talo-Navicular Fusion surgery. I am in the information gathering phase right now and would appreciate any information or experience anyone may have had with or about these surgeries. I also would appreciate any information on surgeons who are experienced with these surgeries and with CMT especially. Thanks in advance for your help and comments. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2011 Report Share Posted April 1, 2011 Hi Kay, I am due in the next few weeks to undergo ttc fusion (tibiatalonavicularcalcaneous) to stabilize the foot, will let you know how it goes. This is the last resort I guess as AFOs are no longer able to support the ankle/foot. Take care Jill (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Hi, I don't know if anyone remembers but I sent messages here a few times that I'll be having surgery on a cyst on left side of my thyroid. 3 weeks ago I went for pre-op tests and filled out forms to agree to surgery. When I got home, I felt the left side of my thyroid and could not feel the cyst. It was 2.4cm in size so it could be easily found. I decided to go for a second opinion. Last week I went for another ultrasound. Just yesterday I saw the Dr. concerning the results of the ultrasound. He said to me, that he has excellent news, that the cyst have gone from 2.4 down to 1.3 and the chance of cancerous cells has gone from 70% down to 30%, therefore I do not need surgery. I am elated, soooo happy that I do not need to go through that. That taught me to always listen to my instincts no matter what anyone says. I thank everyone who has helped me understand hypothyroidism. Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Louise, You wrote: > ... He said to me, that he has excellent news, that the cyst have gone from 2.4 down to 1.3 and the chance of cancerous cells has gone from 70% down to 30%, therefore I do not need surgery. .. Excellent news. Congrats! Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 > > ... He said to me, that he has excellent news, that the cyst have gone from 2.4 down to 1.3 and the chance of cancerous cells has gone from 70% down to 30%, therefore I do not need surgery. .. > > Excellent news. Congrats! > > Chuck > Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Way to go girl! So happy for you. Roni From: " gumboyaya@... " <gumboyaya@...> hypothyroidism Sent: Thursday, May 19, 2011 12:35 PM Subject: Re: re: surgery Louise, You wrote: > ... He said to me, that he has excellent news, that the cyst have gone from 2.4 down to 1.3 and the chance of cancerous cells has gone from 70% down to 30%, therefore I do not need surgery. .. Excellent news. Congrats! Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 Yes, and there can be a fine line between " tons of experience! " and " assembly line. " I was talking with my pain management doctor about hip surgeons, and heh..while he didn't flat come out t and say that about a local surgeon who does do about 8 replacements a day..he sure did agree when I said it. I do realize a lot depends on where you live though. I live in an area with about a bhundred board certified orthopedic surgeons, so there are many choices. In a message dated 7/25/2011 12:41:15 A.M. Eastern Daylight Time, maryanne.waspe1@... writes: It gives me the heeby jeebies to think a surgeon would start a replacement, then go into another theatre, then go back again. I was an OR nurse for 10 years this is not good practice. A Surgeon on the Gold coast was doing the same thing until he ended up doing the wrong joint. that's one of the first questions I ask before I go for any surgery. -------Original Message------- From: Pat Stoeckle Date: 24/07/2011 9:00:28 PM Joint Replacement Subject: Re: [Norton AntiSpam] Two year anniversary , How long were you in the hospital? I had both knees done but at the same surgery. My surgeon did one and said he lets his team close up while he does another person's knee and then came back in to do the second one. I was in for 5 days total. He only does knees and hips...nothing else The nurses in their special unit of the hospital said he does about 8 or 9 patients in one day. I think he operates 2 days a week....but am not sure No machines are used, they start PT in the hospital the very next day after surgery. Most patients go directly home and have a few days of PT at home beginning immediately. Once they think you are ready, you switch to PT out of the home. Pat in Pennsylvania Bilateral TKR August 2010 ----- Original Message ----- From: Joint Replacement Sent: Sunday, July 24, 2011 1:47 AM Subject: [Norton AntiSpam] Two year anniversary Hi all, I celebrated my two year surgical anniversaries 7/16 (left knee) and 7/20 (right knee). I saw my OS for my two year post-op appointment yesterday, and he is very pleased with how I am doing. I had x-rays done at his office, and spent about 20 minutes with him. He said my knees look great, the x-rays looked good, and he's pleased with the range of motion I've got. I asked about kneeling, as he wanted me to continue with kneeling restrictions at my last appointment (a year ago). I am to continue to avoid kneeling if at all possible since the kneecap is the weakest part of the joint. If I do need to kneel, I am supposed to use thick, cushy pads and kneel for as short of a time as possible. I have lymphadema that pre-dates the surgeries. Prior to surgery, I wore knee high compression stockings seven days a week. I couldn't wear them for 10 days or so post surgery, and that combined with the swelling that happened as a result of the surgery, my lymphadema really got out of whack and slowed my recovery from the surgery. For the last nine months or so, I ve incorporated mid-thigh compression stockings 4-5 days per week and wear the knee high ones on alternating days. Yesterday, my surgeon said even my lymphadema is looking good. Life is good in my little corner of the world. [Non-text portions of this message have been removed] ------------------------------------ Be your own advocate! The best patient is an informed patient! Groups Links ----- No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1390 / Virus Database: 1518/3785 - Release Date: 07/24/11 [Non-text portions of this message have been removed] ------------------------------------ Be your own advocate! The best patient is an informed patient! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2011 Report Share Posted September 4, 2011 i am not sure but I think my doc stopped having me take any of those NSAID types of antiinflammatory meds starting at my 30 day post op point because that is when my anticoagulant therapy changes from coumadin to x no of weeks of a prescribed daily anticoagulant regimin involving aspirin. L > > Hi Sherry, > > I had my knee done 10/6/10 and my husband had his knee done 6/15/11. > > Once I got to the one month mark, I started to use naproxen again for pain. > I got off the Percocet so that I could drive again. My husband did also > because we were told that we had to wait 3-4 weeks to drive since we both > had surgery on our right knees. > > I am also on Lyrica which is similar to Neurontin for nerve pain because I > suffer from postpolio syndrome and have nerve damage to both of my hands and > one of my legs. > > Good luck to you > > Bev O > Aurora, Oh > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2011 Report Share Posted September 4, 2011 No, I would not take pain meds if I was not having pain. It just seems that it does not last long and does not control the sciatica. > > Hi sherry, It's best to take the pain meds on schedule. That way the pain doesn't get unmanageable. You will feel when you can cut back. It is very important to keep moving ant get your muscle strength back. I think I stayed on some sort of pain meds for four months. I did not get hooked. I don;t much see the point of pain medication if you have no pain. > Good luck and good therapy! > All the best, Joan > > > > ________________________________ > From: SherryH <sherryhh@...> > Joint Replacement > Sent: Saturday, September 3, 2011 10:49 PM > Subject: surgery > > >  > Both my knees were bad so when the Dr. marked the knee for the surgery, I told him if he got the wrong one, it wouldn't matter since they were both bad. He got a good laugh. I am on my 6th week post op but still have a lot of pain in my knee, thigh and hip. My sciatic nerve is also bothering me quite a bit. What do you find best for the pain? I have never worrried about getting " hooked " on pain meds. I am very careful and only take it when needed. I should take it as directed and that way the pain won't get so bad. Wishing you all pain free days and good healthy. SherryHH > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2011 Report Share Posted September 5, 2011 Thanks Gail, I guess I am just afraid I'll run out and won't have anything to take. I don't really know my surgeon and am not sure how he feels about pain. He could be one that wants you to bite a stick instead of take a pill. ha > > Hey Sherry, > > You need to take your pain meds as directed, you will heal faster if you > are not in pain. > Gayle CA > > > In a message dated 9/3/2011 9:03:02 P.M. Pacific Daylight Time, > sherryhh@... writes: > > Both my knees were bad so when the Dr. marked the knee for the surgery, I > told him if he got the wrong one, it wouldn't matter since they were both > bad. He got a good laugh. I am on my 6th week post op but still have a > lot of pain in my knee, thigh and hip. My sciatic nerve is also bothering me > quite a bit. What do you find best for the pain? I have never worrried > about getting " hooked " on pain meds. I am very careful and only take it > when needed. I should take it as directed and that way the pain won't get so > bad. Wishing you all pain free days and good healthy. SherryHH > > > > ------------------------------------ > > Be your own advocate! The best patient is an informed patient! > Groups Links > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 Sherry, Yes, i too know from experience that no two doctors are the same w hen it comes to writing prescriptions for pain or psychological reasons. I have had some that trust me beyond even my own belief and others that fret at 1/ 10th of that which the other had no concerns about. Did you look to see if you gave refills on your Rx? Dont worry if there are non refills showing. He just might be the kind of doc who likes to know when you need the refills and will refill your medication happily as necessary with just a phone call from yourr pharmacist bwhen you fear you are close to running out of the pills. L > > > > Hey Sherry, > > > > You need to take your pain meds as directed, you will heal faster if you > > are not in pain. > > Gayle CA > > > > > > In a message dated 9/3/2011 9:03:02 P.M. Pacific Daylight Time, > > sherryhh@ writes: > > > > Both my knees were bad so when the Dr. marked the knee for the surgery, I > > told him if he got the wrong one, it wouldn't matter since they were both > > bad. He got a good laugh. I am on my 6th week post op but still have a > > lot of pain in my knee, thigh and hip. My sciatic nerve is also bothering me > > quite a bit. What do you find best for the pain? I have never worrried > > about getting " hooked " on pain meds. I am very careful and only take it > > when needed. I should take it as directed and that way the pain won't get so > > bad. Wishing you all pain free days and good healthy. SherryHH > > > > > > > > ------------------------------------ > > > > Be your own advocate! The best patient is an informed patient! > > Groups Links > > > > > > > > > > > > > > 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.