Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Dear , Since you are new to the group and mentioned having 'Harringtons " , it might be worthwhile for you to explore the subject of flatback syndrome connected with Harringtons. It may not be your case but you should know about it. The readings should help you identify if you have the symptoms. It would be dxd by a scoliosis specialist not a general orthopedic surgeon. The muscle tightness might be helped by muscle relaxers. There are many kinds. Of course they might put you to sleep so nighttime might be the best time to use. Also a good body therapist can help with tight muscles. Myofascial release and strain/counterstrain techniques have helped me tremendously. As always it depends on the talent of the practioner. I would ask around for recommendations and interview the therapist prior to any touching. Acupuncture has helped some scoliotics, too. Good luck. Jolene **************The year's hottest artists on the red carpet at the Grammy Awards. Go to AOL Music. (http://music.aol.com/grammys?NCID=aolcmp00300000002565) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 , We have the same area of coverage T3-L1. My curve is currently 52, but was 77+ prior to surgery in 1977 at age 11. I know of the pain perspective from which you speak & the quality of life you are experiencing..or rather, NOT experiencing at this point. It can be depressing at times. I was in a support group thru my church just a little over a decade ago. The corresponding workbook is called: How to Deal with The Losses of Life. Little did I know that shortly after that experience I would be in a car accident that would radically alter my life from one of bad pain to excruciating pain. While the book & counselling helped from a mental perspective, the biggest boost was to get in a pain clinic & get some appropriate medical support. I have the degeneration that you list as well as do many others on the list. You are in the company of many supportive, informed, in pain people... ~Moonbeam ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Jolene, Thank you for the suggestions. I do have a scoliosis specialist and he has not indicated that I have flat back, so I don't think I do but I will look into it anyway. I do regularly receive acupuncture and it does help, but I've not tried the strain/counterstrain - will look into this as well. Thanks for your support. Buttonjo@... wrote: Dear , Since you are new to the group and mentioned having 'Harringtons " , it might be worthwhile for you to explore the subject of flatback syndrome connected with Harringtons. It may not be your case but you should know about it. The readings should help you identify if you have the symptoms. It would be dxd by a scoliosis specialist not a general orthopedic surgeon. The muscle tightness might be helped by muscle relaxers. There are many kinds. Of course they might put you to sleep so nighttime might be the best time to use. Also a good body therapist can help with tight muscles. Myofascial release and strain/counterstrain techniques have helped me tremendously. As always it depends on the talent of the practioner. I would ask around for recommendations and interview the therapist prior to any touching. Acupuncture has helped some scoliotics, too. Good luck. Jolene **************The year's hottest artists on the red carpet at the Grammy Awards. Go to AOL Music. (http://music.aol.com/grammys?NCID=aolcmp00300000002565) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Dear Moonbeam, Thank you for your reply. I don't know what my curvature was prior to surgery, only that I was a borderline case. The surgeon ( Kostuik) told my parents that if I was his daughter, he would want me to have the surgery - what else would you expect a surgeon to say!?! And, I can't recall what my curve is at present. I feel that I'm in good company with this group. Warm regards, L Howell <moonbeamblessings@...> wrote: , We have the same area of coverage T3-L1. My curve is currently 52, but was 77+ prior to surgery in 1977 at age 11. I know of the pain perspective from which you speak & the quality of life you are experiencing..or rather, NOT experiencing at this point. It can be depressing at times. I was in a support group thru my church just a little over a decade ago. The corresponding workbook is called: How to Deal with The Losses of Life. Little did I know that shortly after that experience I would be in a car accident that would radically alter my life from one of bad pain to excruciating pain. While the book & counselling helped from a mental perspective, the biggest boost was to get in a pain clinic & get some appropriate medical support. I have the degeneration that you list as well as do many others on the list. You are in the company of many supportive, informed, in pain people... ~Moonbeam __________________________________________________________ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping --------------------------------- Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Do you have the disk disease because Harrington Rods were used or will this happen to anyone who has a spinal fusion from T3-L1 as an adolescent when they get older? --- L M <mariconda_l@...> wrote: > Hello, > > I'm new to this group and would really appreciate > some advice from people who've been there before me. > > I had a spinal fusion at age 16 from T3-L1 - > Harrington rods. I am now 48 and have degenerative > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, L3-4, > L4-5. I have excruciating muscle tightness mainly > in my back, neck and shoulders, but also in other > parts of my body to a lesser degree. I presently > don't take any prescription meds but think that > maybe I should start taking prescription muscle > relaxants. I have tried many different forms of > physical therapy. > > I am feeling very depressed. My quality of life > seems to suck the big one!! Any suggestions would > be greatly appreciated. Many thanks, > > > (from Ontario) > > > --------------------------------- > Looking for the perfect gift? Give the gift of > Flickr! > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Degenerating disks can happen to anyone as they age and usually does to some degree. But as scoliotic people with fusions at any age our discs are under greater pressure for degeneration because above and below the fusion take the extra brunt from the immobile fused section. Harrington rods can add extra problems beyond degeneration including flatback because they were straight rods ignoring the natural curves at the top and bottom of a normal spine. And, no, not all surgeons are aware of the existence of flatback...it has been recognized only as a condition for about 10-15 years but been around longer...ignored before that. Even now some doctors aren't up on it (or refuse to see it because of ego?) Jolene **************The year's hottest artists on the red carpet at the Grammy Awards. Go to AOL Music. (http://music.aol.com/grammys?NCID=aolcmp00300000002565) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 I believe it's because of the spinal fusion - I think it's just a matter of physics, when 11 of your 24 vertebrae are immobile, the others are going to wear out faster. The sad reality. Gail Merri <p0etiss@...> wrote: Do you have the disk disease because Harrington Rods were used or will this happen to anyone who has a spinal fusion from T3-L1 as an adolescent when they get older? --- L M <mariconda_l@...> wrote: > Hello, > > I'm new to this group and would really appreciate > some advice from people who've been there before me. > > I had a spinal fusion at age 16 from T3-L1 - > Harrington rods. I am now 48 and have degenerative > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, L3-4, > L4-5. I have excruciating muscle tightness mainly > in my back, neck and shoulders, but also in other > parts of my body to a lesser degree. I presently > don't take any prescription meds but think that > maybe I should start taking prescription muscle > relaxants. I have tried many different forms of > physical therapy. > > I am feeling very depressed. My quality of life > seems to suck the big one!! Any suggestions would > be greatly appreciated. Many thanks, > > > (from Ontario) > > > --------------------------------- > Looking for the perfect gift? Give the gift of > Flickr! > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ --------------------------------- All new - --------------------------------- Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 The disc disease is from the weight, immobility & strain above the area in my case-leaving all the pressure being upheld by the remaining discs. It would've occured no matter what type of rod was used. ~Moonbeam ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Gail, You are right to ask questions about this. From what I have read fusions can indeed cause additional wear at others levels. I don't think there is any dispute about that. However, uncorrected scoliosis causes a tremendous amount of wear & tear also. My scoliosis is congential. I have facet hypertrophy which has caused stenosis. I have a vertabrae that has slipped sideways 1.5cm. In addition, I have a good deal of disk degeneration on multiple levels. It is from the uncorrected, actually uncorrectable, curve. Whether there will be a better long term outcome with a fusion is such a tough call, isn't it? --- Gail Merri <p0etiss@...> wrote: > > Do you have the disk disease because Harrington Rods > were used or will this happen to anyone who has a > spinal fusion from T3-L1 as an adolescent when they > get older? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Yes it is a tough call. I am sorry to hear all you are contending with. I appreciate the information and wish you the best. --- kudzupets <laura@...> wrote: > Gail, > > You are right to ask questions about this. From what > I have read > fusions can indeed cause additional wear at others > levels. I don't > think there is any dispute about that. However, > uncorrected scoliosis > causes a tremendous amount of wear & tear also. > > My scoliosis is congential. I have facet hypertrophy > which has caused > stenosis. I have a vertabrae that has slipped > sideways 1.5cm. In > addition, I have a good deal of disk degeneration on > multiple levels. > It is from the uncorrected, actually uncorrectable, > curve. > > Whether there will be a better long term outcome > with a fusion is such > a tough call, isn't it? > > > > --- Gail Merri <p0etiss@...> wrote: > > > > Do you have the disk disease because Harrington > Rods > > were used or will this happen to anyone who has a > > spinal fusion from T3-L1 as an adolescent when > they > > get older? > > ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Do you think not having the fusion is worse or better? This is really awful either way I think. --- L M <mariconda_l@...> wrote: > I believe it's because of the spinal fusion - I > think it's just a matter of physics, when 11 of your > 24 vertebrae are immobile, the others are going to > wear out faster. The sad reality. > > > Gail Merri <p0etiss@...> wrote: > Do you have the disk disease because > Harrington Rods > were used or will this happen to anyone who has a > spinal fusion from T3-L1 as an adolescent when they > get older? > --- L M <mariconda_l@...> wrote: > > > Hello, > > > > I'm new to this group and would really appreciate > > some advice from people who've been there before > me. > > > > I had a spinal fusion at age 16 from T3-L1 - > > Harrington rods. I am now 48 and have > degenerative > > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, > L3-4, > > L4-5. I have excruciating muscle tightness > mainly > > in my back, neck and shoulders, but also in other > > parts of my body to a lesser degree. I presently > > don't take any prescription meds but think that > > maybe I should start taking prescription muscle > > relaxants. I have tried many different forms of > > physical therapy. > > > > I am feeling very depressed. My quality of life > > seems to suck the big one!! Any suggestions > would > > be greatly appreciated. Many thanks, > > > > > > (from Ontario) > > > > > > --------------------------------- > > Looking for the perfect gift? Give the gift of > > Flickr! > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > --------------------------------- > All new - > --------------------------------- > Get a sneak peak at messages with a handy reading > pane. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 In my case, I more often think I would have been better off not having the fusion. But, of course, I'll never know for sure. One thing that I feel quite bitter about (and yes I do feel bitter, but am trying to get beyond this) is that I have no information about my curvature pre-surgery -- I have no photographs of what my back looked like, don't know what the degree of curvature was, don't know if I grew taller -- my parents never obtained this information -- in fact, my mom disconnected totally from the whole surgery thing -- was not involved at all (ergo, one of the reasons why I'm bitter). By the time I clued in and tried to get copies of my medical records, they had all been destroyed. So, the only thing that I can remember is the surgeon saying that I was a borderline case. I am also a big believer in complementary medicine, energy healing in particular. I regret that I didn't have an opportunity to use this before bringing in the big invasive guns - surgery. As you can probably tell from the tone of my post, I have many mixed feelings about my surgery. I am sure that for many people who were beyond " borderline " that surgery truly was the only option but in my case, I just don't know. I also recollect the surgeon saying that I would lead a normal life, not informing us of potential and likely problems down the road. Well, what I am going through and I'm sure many others on this forum is not " normal " ! Anyway, thanks for listening to me rant. Do others have similar feelings and misgivings? (from Ontario) Gail Merri <p0etiss@...> wrote: Do you think not having the fusion is worse or better? This is really awful either way I think. --- L M <mariconda_l@...> wrote: > I believe it's because of the spinal fusion - I > think it's just a matter of physics, when 11 of your > 24 vertebrae are immobile, the others are going to > wear out faster. The sad reality. > > > Gail Merri <p0etiss@...> wrote: > Do you have the disk disease because > Harrington Rods > were used or will this happen to anyone who has a > spinal fusion from T3-L1 as an adolescent when they > get older? > --- L M <mariconda_l@...> wrote: > > > Hello, > > > > I'm new to this group and would really appreciate > > some advice from people who've been there before > me. > > > > I had a spinal fusion at age 16 from T3-L1 - > > Harrington rods. I am now 48 and have > degenerative > > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, > L3-4, > > L4-5. I have excruciating muscle tightness > mainly > > in my back, neck and shoulders, but also in other > > parts of my body to a lesser degree. I presently > > don't take any prescription meds but think that > > maybe I should start taking prescription muscle > > relaxants. I have tried many different forms of > > physical therapy. > > > > I am feeling very depressed. My quality of life > > seems to suck the big one!! Any suggestions > would > > be greatly appreciated. Many thanks, > > > > > > (from Ontario) > > > > > > --------------------------------- > > Looking for the perfect gift? Give the gift of > > Flickr! > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > --------------------------------- > All new - > --------------------------------- > Get a sneak peak at messages with a handy reading > pane. > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping --------------------------------- Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Fusion comes with the territory of scoliosis correction. I'd much rather live with my degree of correction even with the pain...than live with my curve uncorrected & continuing its progression. ~Moonbeam ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Hi, , I have had what has been called a 'significant curve' and 'relatively minor' since I was 13 or so. It's about 25 to 30 degrees and thoracic only so not too bad, but it started to cause pain in my thirties. I never had the surgery - in my day, it was 'watch and wait' - and probably the curve is not bad enough. That said, I've had episodes of back sprain and strain that were quite painful. Thirty years ago, I was sent to a PT who got me doing exercises every morning and night, and what a godsend it has been. Some of the exercises were yoga and I began to take classes. I still get side aches but stretching out the concave side in yoga is such a relief. I found a book and DVD - Yoga for Scoliosis - by Elise that is great, nothing too strenuous but it really helped me. You can modify yoga poses specifically to derotate your spine and to lengthen your concave side....I could go on and on but what I want to say is, give gentle yoga, especially Iyengar method, a try. I am 61. Best wishes, W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 does anyone know anything about rolfing? --- L M <mariconda_l@...> wrote: > In my case, I more often think I would have been > better off not having the fusion. But, of course, > I'll never know for sure. One thing that I feel > quite bitter about (and yes I do feel bitter, but am > trying to get beyond this) is that I have no > information about my curvature pre-surgery -- I have > no photographs of what my back looked like, don't > know what the degree of curvature was, don't know if > I grew taller -- my parents never obtained this > information -- in fact, my mom disconnected totally > from the whole surgery thing -- was not involved at > all (ergo, one of the reasons why I'm bitter). By > the time I clued in and tried to get copies of my > medical records, they had all been destroyed. So, > the only thing that I can remember is the surgeon > saying that I was a borderline case. > > I am also a big believer in complementary medicine, > energy healing in particular. I regret that I > didn't have an opportunity to use this before > bringing in the big invasive guns - surgery. As you > can probably tell from the tone of my post, I have > many mixed feelings about my surgery. I am sure > that for many people who were beyond " borderline " > that surgery truly was the only option but in my > case, I just don't know. I also recollect the > surgeon saying that I would lead a normal life, not > informing us of potential and likely problems down > the road. Well, what I am going through and I'm > sure many others on this forum is not " normal " ! > > Anyway, thanks for listening to me rant. Do others > have similar feelings and misgivings? > > > (from Ontario) > > Gail Merri <p0etiss@...> wrote: > Do you think not having the fusion is > worse or better? > This is really awful either way I think. > --- L M <mariconda_l@...> wrote: > > > I believe it's because of the spinal fusion - I > > think it's just a matter of physics, when 11 of > your > > 24 vertebrae are immobile, the others are going > to > > wear out faster. The sad reality. > > > > > > Gail Merri <p0etiss@...> wrote: > > > Do you have the disk disease > because > > Harrington Rods > > were used or will this happen to anyone who has > a > > spinal fusion from T3-L1 as an adolescent when > they > > get older? > > --- L M <mariconda_l@...> wrote: > > > > > Hello, > > > > > > I'm new to this group and would really > appreciate > > > some advice from people who've been there > before > > me. > > > > > > I had a spinal fusion at age 16 from T3-L1 - > > > Harrington rods. I am now 48 and have > > degenerative > > > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, > > L3-4, > > > L4-5. I have excruciating muscle tightness > > mainly > > > in my back, neck and shoulders, but also in > other > > > parts of my body to a lesser degree. I > presently > > > don't take any prescription meds but think > that > > > maybe I should start taking prescription > muscle > > > relaxants. I have tried many different forms > of > > > physical therapy. > > > > > > I am feeling very depressed. My quality of > life > > > seems to suck the big one!! Any suggestions > > would > > > be greatly appreciated. Many thanks, > > > > > > > > > (from Ontario) > > > > > > > > > --------------------------------- > > > Looking for the perfect gift? Give the gift of > > > Flickr! > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > __________________________________________________________ > > Be a better friend, newshound, and > > know-it-all with Mobile. Try it now. > > > > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > > > > > > > > > --------------------------------- > > All new - > > --------------------------------- > > Get a sneak peak at messages with a handy reading > > pane. > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________________ > Looking for last minute shopping deals? > Find them fast with Search. > http://tools.search./newsearch/category.php?category=shopping > > > > > > > --------------------------------- > Looking for the perfect gift? Give the gift of > Flickr! > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 Hi W, Thank you for your reply, I really appreciate it. I will definitely look up the Yoga for Scoliosis book and DVD - had not heard of it before you mentioned it. I'm glad that you are able to cope without having had surgery. I wish they had taken a " wait and see " approach with me, but, oh well, it is what it is. Warm regards, (from Ontario) <lmciulik@...> wrote: Hi, , I have had what has been called a 'significant curve' and 'relatively minor' since I was 13 or so. It's about 25 to 30 degrees and thoracic only so not too bad, but it started to cause pain in my thirties. I never had the surgery - in my day, it was 'watch and wait' - and probably the curve is not bad enough. That said, I've had episodes of back sprain and strain that were quite painful. Thirty years ago, I was sent to a PT who got me doing exercises every morning and night, and what a godsend it has been. Some of the exercises were yoga and I began to take classes. I still get side aches but stretching out the concave side in yoga is such a relief. I found a book and DVD - Yoga for Scoliosis - by Elise that is great, nothing too strenuous but it really helped me. You can modify yoga poses specifically to derotate your spine and to lengthen your concave side....I could go on and on but what I want to say is, give gentle yoga, especially Iyengar method, a try. I am 61. Best wishes, W --------------------------------- Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 > > Degenerating disks can happen to anyone as they age and usually does to some > degree. But as scoliotic people with fusions at any age our discs are under > greater pressure for degeneration because above and below the fusion take > the extra brunt from the immobile fused section. Harrington rods can add extra > problems beyond degeneration including flatback because they were straight > rods ignoring the natural curves at the top and bottom of a normal spine. > And, no, not all surgeons are aware of the existence of flatback...it has been > recognized only as a condition for about 10-15 years but been around > longer...ignored before that. Even now some doctors aren't up on it (or refuse to see > it because of ego?) > Jolene > > > > **************The year's hottest artists on the red carpet at the Grammy > Awards. Go to AOL Music. > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 , Thanks. I don't think they have had anti-fungals. But that was kind of my thought, too. Maybe they are needed. At this point, I hesitate to suggest anything. What this person is reminding me of, is when the doctors put my daughter with CF/ABPA on steroids when she was about 9 years old. She turned into a person we had never seen before or since. Quick to anger, irrational, teary, etc. Sharon K In a message dated 10/5/2008 8:31:34 P.M. Pacific Daylight Time, brianc8452@... writes: As EE suggests, you could check with this person to see if they have tried CSM or an antifungal. I didn't have any improvement in the cognitive problems until I took Lamisil. Another option would be to try to reach a close friend or relative of this person to let them know what's going on because they would be in a better position to evaluate whether this is a serious problem or just a temporary lapse in judgment. ----- Original Message ---- From: " snk1955@... " <snk1955@...> Sent: Sunday, October 5, 2008 5:10:00 PM Subject: [] Need some advice Dear All, For several months now, I have been trying to help a very sick mold victim find their way. The last month or so, emails I have received from this person have been increasingly erratic and frequently aggitated. As an example, this past week they told me they gave a referral " on my behalf " of an expert witness to someone. First of all, I would never refer the name of just one expert. That is not something I do. And the name they provided " on my behalf " would not be one I would most likely include among others (unless it was an insurance company who was asking). Now they tell me that they never gave such a referral on my behalf. Made the whole thing up, they say. I am deeply concerned. This is not a stupid person who, as far as I know, has ever acted like this in the past. I feel like I am witnessing an increasing problem of...maybe a blood-brain barrier breach? Any suggestions from anyone on how to deal with this? I am worried about this person and at the same time, I am concerned about being illogically and repeatedly attacked when I question them on what they are doing. It seems like paranoia is setting in or something. I am currently limiting contact. But not sure that is the correct thing to do. What a nasty issue this is from so many aspects. I am stumped. I have never seen anything quite like this. Does anyone have any suggestions? Thanks, Sharon Noonan Kramer Sharon Noonan Kramer **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Jeanine, Took your advice. Sent them an email requesting that they show our email correspondences of the past couple of days to someone close to them. At this point, I think that is all I can really do. It is no wonder we have such a difficult time being heard. This person is semi-freaking me out and I do know a thing or two about what the might be experiencing. It is so sad. When mold victims are at their worst and need their most help, is the same time they have such difficulty communicating effectively. Thanks, Sharon K. In a message dated 10/5/2008 8:54:25 P.M. Pacific Daylight Time, jeaninem660@... writes: the only thing I know to do is try to explain to them what may be happening to them that they might not even reconize it happening, but it can work that way. no dought worse with some than others. maybe explain that the position you are in requires straight facts and they should keep notes to help them remember for both your sakes. it can be sneaky about it and if they haven't realized their suffering these problems you might have to handle with special care. it just depends, with my first exposure I didn't realize I was not funtioning mentally well except for boughts of depression, but I really wasn't putting things together, after second exposure I thought I had lost my mind completely and though I didn't reaconize everything weird about that I did reconize some, enough. a few times I knew what had just came out of my mouth had nothing to do with the question asked. it freaked me out when I reconized it myself. maybe start by asking them if they have noticed any problems with their thought process,moods,their t maybe explain that if they have become chemically reactive that they wont get much grip on funtions until they start advoiding all these things. > > Dear All, > > For several months now, I have been trying to help a very sick mold victim > find their way. The last month or so, emails I have received from this person > have been increasingly erratic and frequently aggitated. > > As an example, this past week they told me they gave a referral " on my > behalf " of an expert witness to someone. First of all, I would never refer the > name of just one expert. That is not something I do. And the name they > provided " on my behalf " would not be one I would most likely include among others > (unless it was an insurance company who was asking). Now they tell me that > they never gave such a referral on my behalf. Made the whole thing up, they say. > > I am deeply concerned. This is not a stupid person who, as far as I know, > has ever acted like this in the past. I feel like I am witnessing an > increasing problem of...maybe a blood-brain barrier breach? > > Any suggestions from anyone on how to deal with this? I am worried about > this person and at the same time, I am concerned about being illogically and > repeatedly attacked when I question them on what they are doing. It seems like > paranoia is setting in or something. I am currently limiting contact. But > not sure that is the correct thing to do. > > What a nasty issue this is from so many aspects. I am stumped. I have never > seen anything quite like this. Does anyone have any suggestions? > > Thanks, > > Sharon Noonan Kramer Sharon Noonan Kramer **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 Hi Sharon, Have the people you mentioned tried anti fungals or csm yet? Not saying that is the only treatment that would work but its in my opinion a good and smart course of treatment. they help alot with regaining some normal cognitive health back. E From: snk1955@... <snk1955@...> Subject: [] Need some advice Date: Sunday, October 5, 2008, 5:10 PM Dear All, For several months now, I have been trying to help a very sick mold victim find their way. The last month or so, emails I have received from this person have been increasingly erratic and frequently aggitated. As an example, this past week they told me they gave a referral " on my behalf " of an expert witness to someone. First of all, I would never refer the name of just one expert. That is not something I do. And the name they provided " on my behalf " would not be one I would most likely include among others (unless it was an insurance company who was asking). Now they tell me that they never gave such a referral on my behalf. Made the whole thing up, they say. I am deeply concerned. This is not a stupid person who, as far as I know, has ever acted like this in the past. I feel like I am witnessing an increasing problem of...maybe a blood-brain barrier breach? Any suggestions from anyone on how to deal with this? I am worried about this person and at the same time, I am concerned about being illogically and repeatedly attacked when I question them on what they are doing. It seems like paranoia is setting in or something. I am currently limiting contact. But not sure that is the correct thing to do. What a nasty issue this is from so many aspects. I am stumped. I have never seen anything quite like this. Does anyone have any suggestions? Thanks, Sharon Noonan Kramer ************ **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local. mapquest. com/?ncid= emlcntnew0000000 1) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 the only thing I know to do is try to explain to them what may be happening to them that they might not even reconize it happening, but it can work that way. no dought worse with some than others. maybe explain that the position you are in requires straight facts and they should keep notes to help them remember for both your sakes. it can be sneaky about it and if they haven't realized their suffering these problems you might have to handle with special care. it just depends, with my first exposure I didn't realize I was not funtioning mentally well except for boughts of depression, but I really wasn't putting things together, after second exposure I thought I had lost my mind completely and though I didn't reaconize everything weird about that I did reconize some, enough. a few times I knew what had just came out of my mouth had nothing to do with the question asked. it freaked me out when I reconized it myself. maybe start by asking them if they have noticed any problems with their thought process,moods,ect. ? maybe explain that if they have become chemically reactive that they wont get much grip on funtions until they start advoiding all these things. > > Dear All, > > For several months now, I have been trying to help a very sick mold victim > find their way. The last month or so, emails I have received from this person > have been increasingly erratic and frequently aggitated. > > As an example, this past week they told me they gave a referral " on my > behalf " of an expert witness to someone. First of all, I would never refer the > name of just one expert. That is not something I do. And the name they > provided " on my behalf " would not be one I would most likely include among others > (unless it was an insurance company who was asking). Now they tell me that > they never gave such a referral on my behalf. Made the whole thing up, they say. > > I am deeply concerned. This is not a stupid person who, as far as I know, > has ever acted like this in the past. I feel like I am witnessing an > increasing problem of...maybe a blood-brain barrier breach? > > Any suggestions from anyone on how to deal with this? I am worried about > this person and at the same time, I am concerned about being illogically and > repeatedly attacked when I question them on what they are doing. It seems like > paranoia is setting in or something. I am currently limiting contact. But > not sure that is the correct thing to do. > > What a nasty issue this is from so many aspects. I am stumped. I have never > seen anything quite like this. Does anyone have any suggestions? > > Thanks, > > Sharon Noonan Kramer > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out! > (http://local.mapquest.com/?ncid=emlcntnew00000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2008 Report Share Posted October 5, 2008 As EE suggests, you could check with this person to see if they have tried CSM or an antifungal. I didn't have any improvement in the cognitive problems until I took Lamisil. Another option would be to try to reach a close friend or relative of this person to let them know what's going on because they would be in a better position to evaluate whether this is a serious problem or just a temporary lapse in judgment. [] Need some advice Dear All, For several months now, I have been trying to help a very sick mold victim find their way. The last month or so, emails I have received from this person have been increasingly erratic and frequently aggitated. As an example, this past week they told me they gave a referral " on my behalf " of an expert witness to someone. First of all, I would never refer the name of just one expert. That is not something I do. And the name they provided " on my behalf " would not be one I would most likely include among others (unless it was an insurance company who was asking). Now they tell me that they never gave such a referral on my behalf. Made the whole thing up, they say. I am deeply concerned. This is not a stupid person who, as far as I know, has ever acted like this in the past. I feel like I am witnessing an increasing problem of...maybe a blood-brain barrier breach? Any suggestions from anyone on how to deal with this? I am worried about this person and at the same time, I am concerned about being illogically and repeatedly attacked when I question them on what they are doing. It seems like paranoia is setting in or something. I am currently limiting contact. But not sure that is the correct thing to do. What a nasty issue this is from so many aspects. I am stumped. I have never seen anything quite like this. Does anyone have any suggestions? Thanks, Sharon Noonan Kramer ************ **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local. mapquest. com/?ncid= emlcntnew0000000 1) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 >Just speaking from personal experience, it is very possible her brain functioning is less than perfect. She culd be getting brain fog in massive amounts-I had it and sometimes I just sat on my bed for an hour because to summon up the functions necessary for me to actually do something was so far out of reach for me that I just sat. It was horrifying when it happened-I used to be a smart person. Assume she is impaired right now and don't get angry-it's not her fault! But she does need more help now making decisions-it's what I lacked when it was time for me to remediate the mold in my house. I was responsible for the decision-making. Yeah I can hear everyone laughing! How was I supposed to decide anything if I couldn't get off the bed! The anger is also very very common-I'm afraid there's not much you can do to change any of this right now-it's a matter of getting away from the mold-then things will improve. > Dear All, > > For several months now, I have been trying to help a very sick mold victim > find their way. The last month or so, emails I have received from this person > have been increasingly erratic and frequently aggitated. > > As an example, this past week they told me they gave a referral " on my > behalf " of an expert witness to someone. First of all, I would never refer the > name of just one expert. That is not something I do. And the name they > provided " on my behalf " would not be one I would most likely include among others > (unless it was an insurance company who was asking). Now they tell me that > they never gave such a referral on my behalf. Made the whole thing up, they say. > > I am deeply concerned. This is not a stupid person who, as far as I know, > has ever acted like this in the past. I feel like I am witnessing an > increasing problem of...maybe a blood-brain barrier breach? > > Any suggestions from anyone on how to deal with this? I am worried about > this person and at the same time, I am concerned about being illogically and > repeatedly attacked when I question them on what they are doing. It seems like > paranoia is setting in or something. I am currently limiting contact. But > not sure that is the correct thing to do. > > What a nasty issue this is from so many aspects. I am stumped. I have never > seen anything quite like this. Does anyone have any suggestions? > > Thanks, > > Sharon Noonan Kramer > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out! > (http://local.mapquest.com/?ncid=emlcntnew00000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Good advice, Quackadillian. I have often said that it is not the mold or even the mold illnesses themselves that are the major problem. It is all the tangental BS that goes along with it. Like not being believed, having to fight for your insured and medical rights, getting 100 different expert advices from 100 different self professed experts, not knowing and trying to figure out who to trust or why some do what they do....and all of this while at your sickest and many times not able to remember clearly what anyone told you. It really can be a traumatic emotional rape on top of everything else one has to deal with, when going thru this issue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Sharon, My own experience was/is that mold exposure literally scrambles your ability to think clearly and that and the fatigue and pain almost everywhere in your body scares you into indecision on everything. It creates a tremendous fear that you are going to lose everything you have worked your whole life for, job, home, family (it tends to divide families down the lines of those who have it and those who don't, usually some do and some don't, and those who do are incapacitated, they can't function at even a fraction of their pre-illness level.) Its a very strong relationship that can survive that. No wonder your friend is freaked out. That said, whenever you are helping someone, you have to also draw a line where you are comfortable. For those of us who are sick, its important to get back on your own feet first. Helping others, even fighting a legal case or fighting a landlord, etc. are luxuries that many (most) have to weigh carefully.. Some can do it, others can barely survive themselves. Most of us are somewhere in the middle.. Quote Link to comment Share on other sites More sharing options...
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