Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 Hi Cliff, be careful with Lupron, we need you here in our group. Click on http:www.Lupronvictims.com http:www.lupronvictims.com/prostca.html pelcka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 Hi Cliff I was just wanted to know where do you get the mushrooms. I would like to start my son on them but have now idea where to get them. Thanks >From: " Cliff Beckwith " <spinner@...> >Reply-cures for canceregroups ><Undisclosed Recipients> >Subject: Doctor's Appointment >Date: Fri, 15 Dec 2000 20:56:49 -0500 > >HI, > >Today I had an appointment with my Oncologist. > >The PSA is in a normal range, 1.7. I will have another in a month. On >August 21 it was 40 following a lot of stress. I had a Lupron shot on the >19 of Sept or thereabouts. > >At that time the count was 36 with Flax Oil the only treatment. I did at >that time begin a regimen of Agaricus Blazei Murill mushroom along with the >flax Oil. > >A month later the count was 7.9 and I had a second shot. Another PSA was >taken in 5 weeks [delay due to illness] and the count was 1.7. It could >well be still dropping but I won't know that for six weeks. > >The Oncologist wants to set up a body scan to determine if there is any >sign >of activity by this time. She is experimenting on me as much as possible. >I told her fine with me as long as Medicare pays for it. > >She is German and knows of Dr. Budwig's work but does not know her >personally. > >She has seen enough herself in the last two years to realize that this is >a >powerful weapon. > >I personally wish that some real experimentation could be done on humans >who >are willing in order that the uncertainty could be laid aside one way or >the >other of the effect of Flaxseed oil on PCa. As far as I am concerned, >there >is little uncertainty. > >It should not be terribly expensive to experiment on dogs. That is not the >same as people but in some ways it should be close. > >I speculated on what the result might have been had I known ten years ago >what I know now and started on about three tablespoons of Flaxseed Oil a >day >with cottage cheese [ with stage 4 PCa] and used Lupron about three months >and when the count got down to undetectable, which it did in 6 months and >probably sooner, [i did not have any PSA tests in between] quit the Lupron >and then when and if the PSA began to rise repeat the process of short >intermittent Lupron. > >The inclusion of Beta Glucan with high vitamin C in the mix might have >prevented the need for more Lupron. > >The Oncologist feels that that program from here on, even at 79, should >take > care of things. > >One man in our area was dxd with PCa, I don't remember his PSA, I know I >referred to him before, used Flax oil and Lupron for three months and then >quit the Lupron. I know that today his PSA is 0.1. > >For myself, I am satisfied. For others, what is done with the evidence >presented, as credible or uncredible as it may be to them, is totally up to >them. > >Cliff > > > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2002 Report Share Posted August 31, 2002 Beth Ann, I have had PA for nearly 13 years now. What I would do is just tell the doc how you feel, not only physically, but mentally, and how you feel the meds are working for you. It sounds like the doc is starting you off slow to see which of the " front line " meds work for you. I remember when I was first diagniosed I was put on a NSAID and they didn't do much for me, it was soon after I told the doc this that we moved to DMARD which worked better. Make sure that you tell the doc that your P is getting worse. All your questions sound excellent, but I personally wouldn't gage his care on how many other PA patients he cares for, but I would ask him/her about their knowledge of PA. I'm kinda leary of docs who feel that PA is just like RA. Good luck! > I wanted to get a little bit of input from some of you that have > been living with PA a little longer than I have. I have my > second rheumy appointment on the 6th of September. I would > like to know some of the things that I should be asking him. > When I went to him 2 months ago when he diagnosed me with PA, > he put me on an NSAID and Prilosac for the stomach upset. > Well, my pain has only subsided a little bit in my fingers, but > I have constant pain in my feet, toes, knees, neck, fingers. I > know that I should be put on some form of DMARD, but I don't > know how to approach this. Anyway, here is what I thought I > should ask him and maybe some of you could reply with other > things that you feel would be beneficial for me to ask also. I > was going to ask him how many patients he is treating with PA, > and if so, what treatment does he have them on. I wanted to > also know what kind of DMARD he feels I should be on, and then > I would like him to up the dose of NSAID that I am on and the > Prilosac, because I am nauseated everyday no matter what I eat. > My P seems to be getting worse also. Anyway, any advice would > be greatly appreciated. Thank you in advance. Beth Ann > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2002 Report Share Posted August 31, 2002 Beth Ann, I would suggest that you tell him essentially what you just put in your message to the forum. Let him know that the NSAIDS aren't working and that you need something stronger. When he asks how you're doing (he does ask, doesn't he?), tell him. In the case of your doctor, it isn't a rhetorical question like it is with acquaintances, etc - he actually needs to know. We tend to disparage our aches and pains just out of habit and second nature, so it's easy to do so without even realizing it. Actually, I just re-read your post and noticed that you've only had one appointment so far. It's common practice, and a good idea I think, to start with the safest treatments first and only escalate if necessary, so his putting you on NDAIDS for the first two months is probably what any other rheumy would have done. Be sure to take the NSAIDS with food, ideally *during* a meal rather than before or after. There is an NPF bulletin on Psoriatic Arthritis that describes the various symptoms and treatments that are commonly used at: https://www.psoriasis.org/pdf/booklet%20pdfs/psoriaticarth.pdf (If the link above wraps around to more than one line, be sure to copy/paste it back into a single line) You may need to sign up for a member name and password to view it. If you have any trouble, let me know and I'll email you a copy. You can also contact the NPF for a hardcopy version at 503-244-7404 or by email at getinfo#npfusa.org (Note: I used the # instead of the @ because normally doesn't display email addresses, so replace the # with an @). Typically, in my experience at least, the next thing he might have you try is either Sulfasalazine (unless you're allergic to sulfur) or an antimalarial like Plaquenil, because they are by far the safest types of DMARDS available. Unfortunately, there are also in my opinion the least effective as well. Also, I caution you that Plaquenil can cause horrendous psoriasis flare-ups in some people - like me for instance. Within three or four days of starting Plaquenil I broke out with little spots of psoriasis all over my body, and a couple of them have never gone away. Fortunately, most people don't seem to have this reaction. I would suggest however, that at least at first you be the patient and let the doctor be the doctor. Just describe your symptoms and let him pick what he thinks is best unless you have some specific reason to disagree. After you've tried a few different things and gotten to know the doctor a little better, you'll probably have a better idea how to proceed. NSAIDS act pretty quickly, but most other drugs take several weeks to show any appreciable effect so try not to be too impatient. Ask him for some pain medication if you need it for temporary relief. You might also ask for a Medrol Dose Pack (oral methylprednisolone taken as a tapered down dose for 6 days) to give you some temporary relief, but it's not something you can take very often because of its harmful side effects. It's absolutely wonderful stuff, and you WILL feel much better almost immediately, but don't get too used to it because the effect is fleeting. A while back, posted a brief history of her illness at: /message/21208 You might want to review it to see what drugs she progressed through. She recommended Zofran, and (I think) Nexium for the nausea. Best of luck, -- Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 On Wednesday, October 30, 2002, at 09:38 PM, purpleoranges2002 wrote: > Now I have to weigh up all the pros and cons and decide whether to > pursue buying the drug privately. Any comments are most welcome. I have to admire your doctor for presenting his case and advising you of options contrary to his opinion. I'm impressed that he took the time to prepare relevant material instead of dismissing you without discission. Could you please post up any material which you would like to talk about? I'm interested in the lupus cases, though Minocin for acne uses much higher doses than the AP. If you feel there is information missing from our web site, please let us know. Perhaps we should have a page documenting the negative arguments to cover all bases. Would it also be possible to go into the financial costing of Minocin vs Methotrexate? Was he comparing private purchase vs insurance subsidised costs? -- spwhite@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Lindy, The dosage of Minocin for acne is usually higher than what we use in AP. If you are very scared about the lupus-like side effects that are rare, but possible with Mino, you can try Doxycycline. Many people have done well on this drug. I personally have taken Minocin for the past 4 years for RA and am almost symptom free!!!!!! Take care, Ute t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Lindy Hi, All respect to your dr. but did he mention how well all of his Arthritic patients are on the standard toxic meds they give?? I do think we all have to make our own decisions on our health.I have a Cousin who went with all the standard and she can barely walk at all and has to be checked all the time for infections,of all kinds. I have done some of these when I was put on disability 15 yrs ago also and was very sick and getting worse. Now today I am close to normal except for fatigue. The difference is great and I feel good also. My question is if you are afraid on these mild Antibiotics how will you ever take what they give to you?? Not being smart but what they offer is toxic and very bad for the body. After 15 yrs. my blood is normal and my body is not deformed . Just My View, but whatever you choose I wish you luck dear from Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 Dear ette, Will insert comments below. Rosemary. Today I had my appointment with Dr. Whitman. I have been getting progressively worse. Dr. Whitman said if I didn't do something soon I would wind up in a wheelchair. I am going on Minocin every morning and Doxy every evening with the sulphur drug 2 x a day, too. Also, I am trying to get set up for clindamycin IV's. He feels I should go on Methotrexate or embrel immediately if the other things don't help soon. He really has me very worried since he's never been an alarmist type of doctor. >I can really understand your fear. I know that these heavy drugs do help people with accute symptoms, but personally, I would not want to put any more toxic drugs into my body. > I am sitting here and just shaking - I don't know what to do. My son wants me to go see Dr. Furman, who believes in juice fasts and a completely vegan diet and has had success with people with RA. I don't know which way to turn. > Vic and I have been on a Vegan diet with juices for the last 3 years. I have chronic Lyme disease and have been in a wheelchair and often use a walking frame. The diet has certainly kept me out of the wheelchair. It has made a big difference. It will not cure me, but it is sooooo worth doing. There have been many reports of RA going into remission on this diet. For more specific info go to www.hacres.com > Any suggestions? I am feeling terribly and I know things are really wrong inside my body. > > Thanks, > ette >ette, please check out the alternatives first before you commit to heavier drugs. It sounds to me like your poor body is already toxic enough. Let us know how you go, Regards, Rosemary. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Good luck, Laurie. You know you are in our thoughts and prayers. Know that once they find the source then they will be able to start action. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Bummer! But glad you are going to get some help! Will be praying for you...I have another friend who is having surgery this AM also! debby [ ] Doctor's appointment I had my appointment with the GI specialist this morning and he scheduled meto have surgery tomorrow at 10:00 to check for a where the bleeding iscoming from. He was a new Doctor, a partner of who I currently see for myAIH. He seemed very nice and very concerned. will keep you informed ofwhat happens. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Laurie, Good luck. I'll be thinking of you & hoping to hear from you soon that all is OK. Sounds like you are finally in good hands. Patty [ ] Doctor's appointment I had my appointment with the GI specialist this morning and he scheduled me to have surgery tomorrow at 10:00 to check for a where the bleeding is coming from. He was a new Doctor, a partner of who I currently see for my AIH. He seemed very nice and very concerned. will keep you informed of what happens. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Laurie ! My prayers will be with you as you undergo your procedure tomorrow proclaiming God's Presence so He may touch the hand of the doctor performing your procedure. " A PHYSICIAN TRIES HIS VERY BEST TO HELP YOU; THE GREAT PHYSICIAN ASSURES YOU THAT YOUR LIFE COULDN'T BE IN BETTER HANDS ! " Love Always, Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Laurie/Greg: So happy that you are getting the proper care. I will pray that the doctors will get in there, find the problem, fix it and get out. Then, Laurie, that your recovery is fast. Remember - what one heart cannot bear alone, a hundred loving hearts can bear with faith. We are all with you!! Love and prayers - gina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Laurie, Thank goodness soemone showed you some concern. You will be in my thoughts. Please keep us informed, you or Greg, as we will all be anxiously waiting your answers. Love, CArole K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Laurie.... the best of luck to you and God's Graces tomorrow...also sounds like you have a keeper in Greg. I shall pray for good things to happen. Please let us know. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2006 Report Share Posted December 18, 2006 What strikes me as odd is that if the plastic surgeons would remove implants before they rupture or leak, it would generate more business for them. I'm shocked that they haven't developed a time line, like remove and replace them every 3 to 5 years. Women might be healthy longer and the docs would be even wealthier. Kenda 12/18/06 1:07 PM > Everyone: Had a doctor's appt. this morning to start this whole > thing off. I was met with near hostility by the nurse practitioner > when I mentioned saline implants and mold. > > When I told her all of my symptoms matched nearly everything on the > list....the nurse practitioner immediately said it was " hocus > pocus " . But I brought to her attention that there is NO denying > what has been actually filmed and presented on t.v....the actual > operation extracting and pulling out moldy implants for people > having them in for several years, the documented evidence of the > leaky valves which cause the body fluids to go back and forth, > creating decay and colonization of mold and bacteria within the > implants. She just shook her head in disbelief and was actually > quite bitchy about it. > > What is this...are doctors who put these in afraid of getting sued > by their patients? After all, think about this. What doctor on the > planet doesn't keep saline in their medicine cabinets and KNOW it > must be kept at room temperatures and discarded after 2 years...not > 10 years and body temperatures. A doctor would never use a 10 year > old bottle of saline that has been sitting in the sun for that > length of time to wash somebody's eyes out! > > Seems the doctors should have put 2 and 2 together before they > approved saline, seems to me this should have come up in the backs > of their minds but they were greedy and wanted to get on with > performing those dollar making breast augs. > > Also seems as though they're all banning together to protect their > own kind from the rise of medical malpractice insurance. I mean, > this makes sense... > > Anyway, they drew blood and are testing my hormones and in the > meantime put me on non-synthetic, all-natural hormone replacement > for 2 weeks to see if my brain fog symptoms improve. I'm certain > some of my problems are hormone related, no doubt because I'm 49. > BUT, there's no denying my other symptoms which cannot possibly be > hormone related. I see the real doctor again in 2 weeks to see what > comes back on my blood work. Will keep you posted. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2006 Report Share Posted December 19, 2006 Run like hell from that doctor's office and find one that believes implants make you ill! Check our list. Lynda At 12:07 PM 12/18/2006, you wrote: >Everyone: Had a doctor's appt. this morning to start this whole >thing off. I was met with near hostility by the nurse practitioner >when I mentioned saline implants and mold. > >When I told her all of my symptoms matched nearly everything on the >list....the nurse practitioner immediately said it was " hocus >pocus " . But I brought to her attention that there is NO denying >what has been actually filmed and presented on t.v....the actual >operation extracting and pulling out moldy implants for people >having them in for several years, the documented evidence of the >leaky valves which cause the body fluids to go back and forth, >creating decay and colonization of mold and bacteria within the >implants. She just shook her head in disbelief and was actually >quite bitchy about it. > >What is this...are doctors who put these in afraid of getting sued >by their patients? After all, think about this. What doctor on the >planet doesn't keep saline in their medicine cabinets and KNOW it >must be kept at room temperatures and discarded after 2 years...not >10 years and body temperatures. A doctor would never use a 10 year >old bottle of saline that has been sitting in the sun for that >length of time to wash somebody's eyes out! > >Seems the doctors should have put 2 and 2 together before they >approved saline, seems to me this should have come up in the backs >of their minds but they were greedy and wanted to get on with >performing those dollar making breast augs. > >Also seems as though they're all banning together to protect their >own kind from the rise of medical malpractice insurance. I mean, >this makes sense... > >Anyway, they drew blood and are testing my hormones and in the >meantime put me on non-synthetic, all-natural hormone replacement >for 2 weeks to see if my brain fog symptoms improve. I'm certain >some of my problems are hormone related, no doubt because I'm 49. >BUT, there's no denying my other symptoms which cannot possibly be >hormone related. I see the real doctor again in 2 weeks to see what >comes back on my blood work. Will keep you posted. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Kenda, you make an excellent point on this.. --- In , Kenda Skaggs <skaggs@...> wrote: > > What strikes me as odd is that if the plastic surgeons would remove implants > before they rupture or leak, it would generate more business for them. I'm > shocked that they haven't developed a time line, like remove and replace > them every 3 to 5 years. Women might be healthy longer and the docs would > be even wealthier. > > Kenda > > > > 12/18/06 1:07 PM > > > Everyone: Had a doctor's appt. this morning to start this whole > > thing off. I was met with near hostility by the nurse practitioner > > when I mentioned saline implants and mold. > > > > When I told her all of my symptoms matched nearly everything on the > > list....the nurse practitioner immediately said it was " hocus > > pocus " . But I brought to her attention that there is NO denying > > what has been actually filmed and presented on t.v....the actual > > operation extracting and pulling out moldy implants for people > > having them in for several years, the documented evidence of the > > leaky valves which cause the body fluids to go back and forth, > > creating decay and colonization of mold and bacteria within the > > implants. She just shook her head in disbelief and was actually > > quite bitchy about it. > > > > What is this...are doctors who put these in afraid of getting sued > > by their patients? After all, think about this. What doctor on the > > planet doesn't keep saline in their medicine cabinets and KNOW it > > must be kept at room temperatures and discarded after 2 years...not > > 10 years and body temperatures. A doctor would never use a 10 year > > old bottle of saline that has been sitting in the sun for that > > length of time to wash somebody's eyes out! > > > > Seems the doctors should have put 2 and 2 together before they > > approved saline, seems to me this should have come up in the backs > > of their minds but they were greedy and wanted to get on with > > performing those dollar making breast augs. > > > > Also seems as though they're all banning together to protect their > > own kind from the rise of medical malpractice insurance. I mean, > > this makes sense... > > > > Anyway, they drew blood and are testing my hormones and in the > > meantime put me on non-synthetic, all-natural hormone replacement > > for 2 weeks to see if my brain fog symptoms improve. I'm certain > > some of my problems are hormone related, no doubt because I'm 49. > > BUT, there's no denying my other symptoms which cannot possibly be > > hormone related. I see the real doctor again in 2 weeks to see what > > comes back on my blood work. Will keep you posted. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 , None of us are medical people, least of all me...but I too would encourage you to get a second opinion at some point before you decide about surgery. It is true that there is continuing forward progress in just about every aspect of medicine. And this is elective surgery...so to the extent that you feel you can put it off, well...you will know when the time is right. A few things in your post do worry me a little. Most of the discussion we have had here on the subject of a " stand alone decompression/discectomy " vs. a full revision could be found if your search under " edie " , " kam " and most recently " ken " . If I can summarize what I think I have learned and seen and maybe it will inspire you to see what more you can find out. I think Kam had the clearest response on the idea of a " stand alone " procedure by DrLagrone. She said he was emphatically against it, and went further to say that it makes any further fusion, which would almost certainly be necessary, very difficult/challenging. I don't know the hows and whys of that statement...I am just relaying that info. My own situation before surgery was debating the possiblity of a stop gap surgery that would allow me to get through one more year of work...so I discussed the idea with DrRand and DrBoachie. Both said that while it was a possiblity, the recovery was almost as long at a revision and I would be at revision in a years time anyway. And as I understood it, during the period the spine would be unstable and so there was great liklihood that we could be at full blown revision in a very hastey way...instead of the more slow setting of a date and working all the arrangements out that most of us have enjoyed (yeah, right!). K.went this route and got a bit more than a year out of the decompression and Edie will maybe be two years by the time she has revision this April. But neither of them returned to a painfree period with good function between either. So please be a little skeptical that this is the route your want to go. I don't know anything about this disolving rod business...it sounds very futuristic. Do you want to be the first? No. The 10th? No. Maybe the 100th? I don't know. I would want a bit more longevity to the study before I signed up for that stuff. Every time they go in and monkey around our spines they create scar tissue and trauma. There are not a whole lot of " do-overs " available to us before we end up with chronic nerve pain! There has been some recent research on orthopods and total knee replacement. In fact, the State of Mass. dept of health has the studies up detailing that those surgeons that routinely do knee replacement, revisions knee replacment and double knee replacment procedures have far better outcomes than other surgeons. I recall the benchmark was 50 such surgeries in their specialty a year. Mass. now lists each surgeon and the # of each procedure they are reporting done. They also are making available to the public the numbers of procedures other surgeons have done in other high rish surgeries (heart and cancer mostly). Clearly, as a consumer, it is good to know that while we can't know exactly how many surgeries our docs have done...there is good reason to believe that the more they have done...the better the chance is that you will have a good outcome. 6- 10 such surgeries a year doesn't sound like many to me. And I am willing to bet they are revisions as in a follow on surgery, not revisons for fixed saggital imbalance, (flatback). Be sure when you talk to his patients that they are patients who are the same as you...adults with prior HR's and about the same age. I think you are wise to go ahead and get the epidural...just realize that with the exception of SB, noone in this group has had any signifigant reduction in pain for longer than a few weeks from the shots. But you have to try. You just have to exhaust all options...and who knows, they may work for your for awhile. I don't know about sky diving. DrRand said I could return to skiing...but I am just not allowed to fall. I don't think I would jump out of an airplane! I hope the epidurals work. Let us know when you get them scheduled. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 , I have a feeling your doc may do revision surgeries that are not revisions on patients who have had prior long fusions with a Harrington rod. You should be that specific when asking about his experience. The procedure he explained to you is just not the way the surgeons with the most experience do things. Please be careful and seek a second opinion. Good Luck. Bonnie [ ] Re: Doctor's appointment ,None of us are medical people, least of all me...but I too would encourage you to get a second opinion at some point before you decide about surgery. It is true that there is continuing forward progress in just about every aspect of medicine. And this is elective surgery...so to the extent that you feel you can put it off, well...you will know when the time is right.A few things in your post do worry me a little. Most of the discussion we have had here on the subject of a "stand alone decompression/discectomy" vs. a full revision could be found if your search under "edie" , "kam" and most recently "ken". If I can summarize what I think I have learned and seen and maybe it will inspire you to see what more you can find out.I think Kam had the clearest response on the idea of a "stand alone" procedure by DrLagrone. She said he was emphatically against it, and went further to say that it makes any further fusion, which would almost certainly be necessary, very difficult/challenging. I don't know the hows and whys of that statement...I am just relaying that info.My own situation before surgery was debating the possiblity of a stop gap surgery that would allow me to get through one more year of work...so I discussed the idea with DrRand and DrBoachie. Both said that while it was a possiblity, the recovery was almost as long at a revision and I would be at revision in a years time anyway. And as I understood it, during the period the spine would be unstable and so there was great liklihood that we could be at full blown revision in a very hastey way...instead of the more slow setting of a date and working all the arrangements out that most of us have enjoyed (yeah, right!). K.went this route and got a bit more than a year out of the decompression and Edie will maybe be two years by the time she has revision this April. But neither of them returned to a painfree period with good function between either. So please be a little skeptical that this is the route your want to go.I don't know anything about this disolving rod business...it sounds very futuristic. Do you want to be the first? No. The 10th? No. Maybe the 100th? I don't know. I would want a bit more longevity to the study before I signed up for that stuff. Every time they go in and monkey around our spines they create scar tissue and trauma. There are not a whole lot of "do-overs" available to us before we end up with chronic nerve pain!There has been some recent research on orthopods and total knee replacement. In fact, the State of Mass. dept of health has the studies up detailing that those surgeons that routinely do knee replacement, revisions knee replacment and double knee replacment procedures have far better outcomes than other surgeons. I recall the benchmark was 50 such surgeries in their specialty a year. Mass. now lists each surgeon and the # of each procedure they are reporting done. They also are making available to the public the numbers of procedures other surgeons have done in other high rish surgeries (heart and cancer mostly). Clearly, as a consumer, it is good to know that while we can't know exactly how many surgeries our docs have done...there is good reason to believe that the more they have done...the better the chance is that you will have a good outcome. 6-10 such surgeries a year doesn't sound like many to me. And I am willing to bet they are revisions as in a follow on surgery, not revisons for fixed saggital imbalance, (flatback). Be sure when you talk to his patients that they are patients who are the same as you...adults with prior HR's and about the same age.I think you are wise to go ahead and get the epidural...just realize that with the exception of SB, noone in this group has had any signifigant reduction in pain for longer than a few weeks from the shots. But you have to try. You just have to exhaust all options...and who knows, they may work for your for awhile.I don't know about sky diving. DrRand said I could return to skiing...but I am just not allowed to fall. I don't think I would jump out of an airplane!I hope the epidurals work. Let us know when you get them scheduled. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 I will take all your advice and think real hard. I just want the pain to go away and not let it control my life, it made so much sense when he was talking to me. Now I am not so sure, he did warn me that if I did not have the full fusion that I may have to go back in the future to have my back completely fused. I go for a consulation tomorrow 02/01 for the epidural block. Currently that is my only hope right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 I think you should clarify with him what he means when he talks about replacing your rods and correcting more of your curve - find out exactly what implications this will have for your lordosis and so your sagittal balance. Also, whether the decompression will be within or below the existing/new fusion. Basically, if he's talking about for example decompressing in the L3-4 region (if that's where the problem lies), and fusing you down a bit further than you currently are, say to L4 or L5 then *if* your remaining discs are stable and good, and *if* he has good reason to think he can get enough correction of your sagittal balance without going to the sacrum, that's not such a controversial plan. While most people here do end up being fused to the sacrum during revision surgery, it's not true of all of us. I'm not because they were able to get enough correction of both my sideways lean and my forward lean while only going to L4. They'd thoroughly assessed my lower discs before surgery, and now 4.5 years later they're still just fine. Yes, it meant another surgery eventually was likely because eventually the discs would give, but that's showing no signs of happening. Being me I just have to be odd, so I've gone and developed stenosis below the fusion, so unfortunately I'll have to have another surgery to decompress that, and to support the decompression it will almost certainly be necessary to fuse to the sacrum despite that the discs are still good. This has taken everyone by surprise though, and that's in a teaching hospital *lol* I don't know if you have any idea how the NHS works, but you're unlikely to see your own consultant at each appointment, so I've seen other surgeons in between times - some of them senior, some of them less so. A couple of the mid level guys, ones that put it this way, if I had a child needing a straightforward fusion I'd have no reason not to trust them fully, have been quite eager to tell me how I could have a laminectomy and foraminotomy to decompress. I can assure you Mr Webb when I saw him has not suggested this. He's a lot more cagey about the whole thing (and also diagnosed more or less on the spot exactly what one of the pains was from, and then getting me to bend around just confirmed it - I'd thought I had sacro-iliac pain, turns out it's referred pain from my L4-5 facet joint!!). If he suggests we should try just the decompression, and as long as he's got a plan to get me in asap for the fusion if it destabilises everything, then yes I'll give it a go, but I can't see doing it otherwise. But nevertheless, I'd clarify a few things with your surgeon to find out exactly what he means. I believe Carla Kay, who had the same surgeon as , is also not fused to the sacrum and I'm sure there's a couple of others of us around, but names elude me at the moment. All of that said, I think you'd do very well to get a second opinion if you are able to, just to put your mind at ease - particularly if something very similar is suggested, or you can understand why there are differences, it'll help with feeling good about going forward with it. Finally, on epidurals - they don't work for everyone, and they're certainly not a truly long term solution, but I'd always recommend trying it. I had one last year, and it was great - it actually did very little pain wise, but must have had quite a bit of effect even so as I was able to walk further, and much more upright, didn't have the dragging legs, stopped getting the foot drop and other neurological symptoms, and was able to survive a weekend at the Download rock festival - something I'd been dreading almost as much as looking forward to it. The pain per se may not have been less, but I was so much more comfortable in other ways and being able to be more active again for a while was great. And at the very least, getting anything out of it reassured me that decompression when I eventually have it, will help. titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 I'm not fused to the sacrum either - L5, so L5 and S1 are free, and much like you mentioned Titch, I was told that I may likely need another one down the road, but they stopped because L5 was okay at this point, and because of my age, they wanted to preserve my mobility and hips for as long as possible. Sorry to hear your stenosis has formed at L5 now though! Cena From: oojackapivvy@...Date: Thu, 1 Feb 2007 10:32:27 +0000Subject: Re: [ ] Re: Doctor's appointment I think you should clarify with him what he means when he talks about replacing your rods and correcting more of your curve - find out exactly what implications this will have for your lordosis and so your sagittal balance. Also, whether the decompression will be within or below the existing/new fusion. Basically, if he's talking about for example decompressing in the L3-4 region (if that's where the problem lies), and fusing you down a bit further than you currently are, say to L4 or L5 then *if* your remaining discs are stable and good, and *if* he has good reason to think he can get enough correction of your sagittal balance without going to the sacrum, that's not such a controversial plan. While most people here do end up being fused to the sacrum during revision surgery, it's not true of all of us. I'm not because they were able to get enough correction of both my sideways lean and my forward lean while only going to L4. They'd thoroughly assessed my lower discs before surgery, and now 4.5 years later they're still just fine. Yes, it meant another surgery eventually was likely because eventually the discs would give, but that's showing no signs of happening. Being me I just have to be odd, so I've gone and developed stenosis below the fusion, so unfortunately I'll have to have another surgery to decompress that, and to support the decompression it will almost certainly be necessary to fuse to the sacrum despite that the discs are still good. This has taken everyone by surprise though, and that's in a teaching hospital *lol* I don't know if you have any idea how the NHS works, but you're unlikely to see your own consultant at each appointment, so I've seen other surgeons in between times - some of them senior, some of them less so. A couple of the mid level guys, ones that put it this way, if I had a child needing a straightforward fusion I'd have no reason not to trust them fully, have been quite eager to tell me how I could have a laminectomy and foraminotomy to decompress. I can assure you Mr Webb when I saw him has not suggested this. He's a lot more cagey about the whole thing (and also diagnosed more or less on the spot exactly what one of the pains was from, and then getting me to bend around just confirmed it - I'd thought I had sacro-iliac pain, turns out it's referred pain from my L4-5 facet joint!!). If he suggests we should try just the decompression, and as long as he's got a plan to get me in asap for the fusion if it destabilises everything, then yes I'll give it a go, but I can't see doing it otherwise. But nevertheless, I'd clarify a few things with your surgeon to find out exactly what he means. I believe Carla Kay, who had the same surgeon as , is also not fused to the sacrum and I'm sure there's a couple of others of us around, but names elude me at the moment. All of that said, I think you'd do very well to get a second opinion if you are able to, just to put your mind at ease - particularly if something very similar is suggested, or you can understand why there are differences, it'll help with feeling good about going forward with it. Finally, on epidurals - they don't work for everyone, and they're certainly not a truly long term solution, but I'd always recommend trying it. I had one last year, and it was great - it actually did very little pain wise, but must have had quite a bit of effect even so as I was able to walk further, and much more upright, didn't have the dragging legs, stopped getting the foot drop and other neurological symptoms, and was able to survive a weekend at the Download rock festival - something I'd been dreading almost as much as looking forward to it. The pain per se may not have been less, but I was so much more comfortable in other ways and being able to be more active again for a while was great. And at the very least, getting anything out of it reassured me that decompression when I eventually have it, will help. titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone Live Search: New search found Try it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 , I wasn't aware of the surgeon you went to at INOVA. What was his/her name? You probably got the message from the folks on this forum that the doctors that do initial scoliosis surgeries may or may not be the person you want to do your revision. Dr. Lauerman at town feels that there aren't significant changes coming for revisions/fusions under long fusions in the next few years that will be worth waiting for. He may be more conservative than the doctor you saw. You may want to see him. Also consider Dr. Kebaish at Hopkins. Multiple opinions definetely help fill in the blanks. Both are in reasonable driving distance. I hope you get your pain under control first. Good luck. Annette in Arlington " Live Straight " > > Hi, > Just came back from doctor's appointment to talk about revision > surgery. He is a well known doctor for scolosis surgery at INOVA > fairfax hospital (he did my daughters) he does 6-10 revision > surgeries a year. He told me he wants me to get the epidural block > first, so we can see how long I can go with that he said its just a > band aid but if we can hold off on the surgery as long as possible > it would be a good idea because there is so much new experiments > happening right now for example disolving rods and the artificial > vertabres. He also talked about not fusing me all the way down to > the secrum but decomprising the area that is pressing against my > nerves (which of course is causing me the most pain) and also > correcting more of my curve and taking out the harrington rods and > replacing them with titanum rods. > He should me a pitcure of a lady that was hanging on his office wall > who was sking diving and she had the revision surgery. > So I guess now I pray the epidural works so I can be free of pain > and of course go talk to him some more and talk to some of his > patients who have had it done > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 His name is Dr Reing. He has been dealing with scoliosis for more the 25 years he use to do the Harrington rod surgeries and he said now he has having to do revision surgery on the very same people. I am going to have a second opinion I had written down Dr Lauerman name from the last time I talked to you. I know some people fell a full revision is the way to go, but I am only 39 and I want to keep my mobility for as long as possible that is why I am leaning towards not getting the full fusion done. It's just thinking aloud right now. I did go and have the epidural block done on Friday. I have a little bit of relief but the doctor said it could take about 4-5 days before I notice anything. So I pray for that right now. Quote Link to comment Share on other sites More sharing options...
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