Question:
Kate, I don’t know if this will help, but, I just had this procedure last week. They gave me something call Merced (hope I spelled that right) It is a type of hypnotic drug. I never felt a thing and do not remember it at all. The doctor explained this was fairly new and worked with people with scar tissue. (my scar tissue is from many female surgs. uterus was adhered to my colon at one time, had to be surg removed) all I know is, I was so frightened and it sure did the trick. Good luck, I know this is not a fun thing. Dana "The Fruit of the Spirit Is Love and Peace"
Response:
On Sat, 26 Feb 2000 00:51:07 -0800 (PST), DanaD…@webtv.net (DeltaDana) wrote: >Kate, >I don’t know if this will help, but, >I just had this procedure last week. They >gave me something call Merced (hope I >spelled that right)
I’ve had versed — although I honestly don’t know if they used it last time. I’ve had versed for several breast biopsies and the installation of a mediport. I have to say that I told a very naughty joke to the doctors last time I was dozing under versed and then fell asleep. It is a pretty nice drug, which needs to be used with local anesthesia but which leaves you happy, relaxed, and unconcerned that they are slicing holes in you and installing bits of plastic. The normal routine for colonoscopy today is versed and demerol. Ask if that is what they are planning to use, be prepared to stop the procedure if the MS spasms are unusual, but get screened. Kate
Response:
>>Merced<<
I believe you’re referring to Verced. (?) It’s actually been around for at least 10 years. Usually with valium and demerol for me!! I’ve had 6 colonoscopys, many sigmoidoscopys, gastroscopys, endoscopys and every damned oscopy there is… Up, down and all around. I *need to have another one, but do not have a gastro in this town, so…….. Judging from the general lack of quality physicians around here, I am understandably resistant. 3 times I’ve gone to a new doc for a necessary reason only to come away with more severe problems than I went in with. And, Kate… I DID scream, too, the one and only time I was undermedicated!!!!!! Damn near bit the tube down my throat in half! Judith
Response:
>>>She has been unable to have an MRI because of severe claustrophobia.<<
Many places now have the open MRI machines. She would certainly be a candidate if one were close. Judith ~~~~~~~~~~~~~~~~~~~~~ "If we knew what we were doing, it would not be called research, would it?" —Albert Einstein ~~~~~~~~~~~~~~~~~~~~~
Response:
Kate, The first time I had a colonoscopy this happened to me. I was awake enough to complain about the pain, so they sedated me a bit more. The effect of that was to make me unable to move or speak, but did not stop me from feeling the pain. That was sheer torture. Understandably I was reluctant to have further colonoscopies. But because of family history, I was persuaded to subject myself to it again a few years later, and have had another one still since then. They seemed to use a different kind of anaesthetic for these two. I was interviewed by the anaesthetist before the procedure, and told him of my MS, asthma and throat spasms, as well as that early experience, and he chose an anaesthetic that would do the job properly. I had no trouble, and don’t remember a thing. So maybe an appropriate anaesthetic would be the answer for this lady. Carmel – Hide quoted text — Show quoted text -Kate Murphy wrote: > On Thu, 24 Feb 2000 12:12:52 GMT, Jenny <ja…@home.com> wrote: > >Any info on the burning pain you can give me would be appreciated and > >any ideas on getting her diagnosed based on more than syptoms would be > >great also. They haven’t done evoked potentials yet, that may be > >coming. > >Jenny > Jenny, > One possibility would be to use a CT scan — these were used prior to > MRI. They are not as accurate and might not show the lesions. Spinal > tap is another possibility. > There are a small group of people with MS who never show lesions on > MRI anyway. The best diagnosis of MS is made by a good clinical > neurological exam. What MRI or CT scan can do very often is rule out > other disease like brain tumor or stroke. > Meanwhile, burning pain often responds to neurotonin, sometimes to > elavil. Seems worth a try. > What treatment is the woman receiving. Since she is in a rehab > facility, I assume her symptoms and inability to move on her own are > pretty severe. Has she had a course of steroids? > The other direction, which can supplement medication, is > relaxation/meditation. This doesn’t mean the pain is "all in her > head" and she can think it away, but simply that relaxation techniques > may make it easier for her to deal with. > The other question is whether she is experiencing shingles, which > might go along with the MS or might have triggered her exacerbation. > Shingles can also be treated. > If her doctors are dismissing her symptoms as some sort of female > hysteria, she should get some new ones. This happens to lots of us > during our lives with MS. > Kate
– " Don’t wait for a light to appear at the end of the tunnel. Stride down there and light the bloody thing yourself." www.cyberwizards.com.au/~carmel www.cyberwizards.com.au/~jaragun
Response:
Kate, You not only have an unusual sort of courage, you also have an unusual gift of intelligence and an amazing strength of character. I envy and admire you more than I can say. Love, SW SheWolf sw…@tpg.com.au "Kate Murphy" <kat…@mindspring.com> wrote in message
news:38b69675.58978096@nntp.mindspring.com… – Hide quoted text — Show quoted text -> On Thu, 24 Feb 2000 13:29:04 GMT, Jenny <ja…@home.com> wrote: > >Thanks for responding. This lady refuses sedation, she is so terrified > >that she won’t even try it. She says she has tried sedation for other > >procedures before and it has not helped. Spinal fluid was lost at an > >outside hospital. All hospitals seem to have some screw ups. > I am going to share my experience with colonoscopy, something I > usually don’t write about because it was so emotionally devastating to > me. > I have colon cancer, and had a colonoscopy where it was discovered. > Usually these exams are done under sedation and there is little or no > pain. However, occasionally someone like me comes along and has > severe pain. > When it came time for my first year follow-up colonoscopy, I was > terrified. I begged (that is the word!!) for something to relax me > prior to the exam, but the gastroenterologist and a—h—- refused to > prescribe anything. > Well, this one was a nightmare. Finally, I realized in my drug > befuddled brain that the only answer was to scream until they stopped. > I did. Looking back, it may have been scar tissue or it may be the MS > that sends my colon into severe spasm. But pain is not even an > adequate word. > I ended up 3 months later in a psychiatrist’s office experiencing > panic attacks, nightmares, crying . . . It was diagnosed as post > traumatic stress disorder. > Paxil helped calm me. The next time I needed a colonoscopy, it was > done under general anesthesia. It still frightens me very badly, but > it can be done. It takes an unusual sort of courage even to think or > talk about it, much less do it. > And this is the year! > So, I understand this woman’s fear. A good psychiatrist or hypnotist > might help. The best thing my psychiatrist did for me was believe in > my fear and tell me that I would never have to be hurt like that > again, that anesthesia could be used. > Children are sedated for MRI all the time. > I think this woman would benefit from working with a skilled > psychotherapist to put her back in control of her fears. (This is NOT > to say that her MS is a result of her emotional needs and shouldn’t be > miscontrued by either the woman or her doctors.) > Love to all, > Kate > PS — March is Colon Cancer Awareness Month. If you are over 50, you > need to be screened for colorectal cancer either by an annual FOBT — > fecal occult blood test — combined with a sigmoidoscopy every five > years or by FOBT and colonoscopy every 10 years. > Colorectal cancer is the second leading cancer killer of men and women > in the United States and Canada. It can be prevented by screening and > removing the precancerous polyps that eventually become colon cancer.
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Response:
On Thu, 24 Feb 2000 13:29:04 GMT, Jenny <ja…@home.com> wrote: >Thanks for responding. This lady refuses sedation, she is so terrified >that she won’t even try it. She says she has tried sedation for other >procedures before and it has not helped. Spinal fluid was lost at an >outside hospital. All hospitals seem to have some screw ups.
I am going to share my experience with colonoscopy, something I usually don’t write about because it was so emotionally devastating to me. I have colon cancer, and had a colonoscopy where it was discovered. Usually these exams are done under sedation and there is little or no pain. However, occasionally someone like me comes along and has severe pain. When it came time for my first year follow-up colonoscopy, I was terrified. I begged (that is the word!!) for something to relax me prior to the exam, but the gastroenterologist and a—h—- refused to prescribe anything. Well, this one was a nightmare. Finally, I realized in my drug befuddled brain that the only answer was to scream until they stopped. I did. Looking back, it may have been scar tissue or it may be the MS that sends my colon into severe spasm. But pain is not even an adequate word. I ended up 3 months later in a psychiatrist’s office experiencing panic attacks, nightmares, crying . . . It was diagnosed as post traumatic stress disorder. Paxil helped calm me. The next time I needed a colonoscopy, it was done under general anesthesia. It still frightens me very badly, but it can be done. It takes an unusual sort of courage even to think or talk about it, much less do it. And this is the year! So, I understand this woman’s fear. A good psychiatrist or hypnotist might help. The best thing my psychiatrist did for me was believe in my fear and tell me that I would never have to be hurt like that again, that anesthesia could be used. Children are sedated for MRI all the time. I think this woman would benefit from working with a skilled psychotherapist to put her back in control of her fears. (This is NOT to say that her MS is a result of her emotional needs and shouldn’t be miscontrued by either the woman or her doctors.) Love to all, Kate PS — March is Colon Cancer Awareness Month. If you are over 50, you need to be screened for colorectal cancer either by an annual FOBT — fecal occult blood test — combined with a sigmoidoscopy every five years or by FOBT and colonoscopy every 10 years. Colorectal cancer is the second leading cancer killer of men and women in the United States and Canada. It can be prevented by screening and removing the precancerous polyps that eventually become colon cancer.
Response:
In article <20000224112037.05790.00000…@ng-fa1.aol.com>, carnig…@aol.com (CarniGurl) writes: >I’m not claustrophobic, but I feel >that someone who is would have just about as much trouble with the open MRI, >although it was developed specifically for claustrophobic people
The key here is pre-tranquilize a lot. I actually slept thru 1 MRI. Kathi
Response:
In article <38B52064.A8A0B…@home.com>, Jenny <ja…@home.com> writes: >She has been unable to have an MRI because of severe claustrophobia.
If you pre-tranquilize enough it might be possible. Have someone else with you to drive you home of course. Kathi
Response:
On Thu, 24 Feb 2000 12:12:52 GMT, Jenny <ja…@home.com> wrote: >Any info on the burning pain you can give me would be appreciated and >any ideas on getting her diagnosed based on more than syptoms would be >great also. They haven’t done evoked potentials yet, that may be >coming. >Jenny
Jenny, One possibility would be to use a CT scan — these were used prior to MRI. They are not as accurate and might not show the lesions. Spinal tap is another possibility. There are a small group of people with MS who never show lesions on MRI anyway. The best diagnosis of MS is made by a good clinical neurological exam. What MRI or CT scan can do very often is rule out other disease like brain tumor or stroke. Meanwhile, burning pain often responds to neurotonin, sometimes to elavil. Seems worth a try. What treatment is the woman receiving. Since she is in a rehab facility, I assume her symptoms and inability to move on her own are pretty severe. Has she had a course of steroids? The other direction, which can supplement medication, is relaxation/meditation. This doesn’t mean the pain is "all in her head" and she can think it away, but simply that relaxation techniques may make it easier for her to deal with. The other question is whether she is experiencing shingles, which might go along with the MS or might have triggered her exacerbation. Shingles can also be treated. If her doctors are dismissing her symptoms as some sort of female hysteria, she should get some new ones. This happens to lots of us during our lives with MS. Kate
Response:
Jenny, Has the possibility of medicating prior to an MRI been considered by the patient and her doctor?…Prior to my MRI I was medicated with Valium which helped reduced the stress of being in the tube. I also had my MRI done where you have a *halo* like device placed over you but gives the appearance of openess and you don’t even see the actual inside of the MRI tube. This helped alot. Maybe she could consider these possibilities. Linda — Every Day is a Gift from God…that is why it is called the Present
Response:
>Jenny ja…@home.com Writes:
<snipping> >She has been unable to have an MRI because of severe claustrophobia. >Even a search of this area of the country for an open MRI machine has >been usesless. I found out that the so called open machines require the >patient to wear a hood which is even worse than the tube.
<snipping> Jenny I had an open MRI last week at Nydic Open MRI in the Dayton OH area. It was very convenient for me, less than a 10 min drive through my suburb and *not located in a hospital that was *full of flu patients. I did not wear a "hood" and found the head gizmo to be no different than a regular MRI. It was much more comfortable for me because my body with broad shoulders were not in the tube. Your patient, however, might not be able to handle an open MRI either because the head area is so much like the reg MRI. I’m not claustrophobic, but I feel that someone who is would have just about as much trouble with the open MRI, although it was developed specifically for claustrophobic people. Good luck in your search for answers. I wish I had more to offer you. Conni
Response:
This sounds incredible. The lady could be sedated for an MRI. It’s really no big deal. As for losing the spinal fluid – what can I say? Do stuff-ups like this happen often? Evoked potentials could give some answers. The symptoms sound as if it could be MS, and the diagnosis is made after eliminating all other possibilities. It could be a long process. It has been for many of us. I wish you and your patient good luck with getting a diagnosis soon. Carmel – Hide quoted text — Show quoted text -Jenny wrote: > I am a nurse case manager at a subacute rehab center. I currently have a > patient there with possible MS. One of her current symptoms is a band > across her abdomen of burning pain. She describes it as feeling like it > is on fire. The docs have discounted this as being related. I believe > it is. > I have fibromyalgia and have been worked up several times for MS and > have had areas of burning myself. I have done a lot of reading over the > years on MS and all autoimmune diseases. So I have a strong suspicion > that this is related. > This lady was well until about a month ago when she woke up with > paralysis of her left leg only. Since then she has also had double > vision, dizziness, weakness, areas of tingling and numbness and the > burning sensation I described above. > She has been unable to have an MRI because of severe claustrophobia. > Even a search of this area of the country for an open MRI machine has > been usesless. I found out that the so called open machines require the > patient to wear a hood which is even worse than the tube. Some machines > have a shorter tube and are also considered open but still enclose the > head for the exam. She had a spinal tap and the hospital lost the > fluid. She is very anxious, tearful and desperate for answers. > Any info on the burning pain you can give me would be appreciated and > any ideas on getting her diagnosed based on more than syptoms would be > great also. They haven’t done evoked potentials yet, that may be > coming. > Jenny
– " Don’t wait for a light to appear at the end of the tunnel. Stride down there and light the bloody thing yourself." www.cyberwizards.com.au/~carmel www.cyberwizards.com.au/~jaragun
Response:
Thanks for responding. This lady refuses sedation, she is so terrified that she won’t even try it. She says she has tried sedation for other procedures before and it has not helped. Spinal fluid was lost at an outside hospital. All hospitals seem to have some screw ups. – Hide quoted text — Show quoted text -CPD wrote: > This sounds incredible. The lady could be sedated for an MRI. It’s > really no big deal. As for losing the spinal fluid – what can I say? > Do stuff-ups like this happen often? > Evoked potentials could give some answers. The symptoms sound as if it > could be MS, and the diagnosis is made after eliminating all other > possibilities. It could be a long process. It has been for many of > us. I wish you and your patient good luck with getting a diagnosis > soon. > Carmel > Jenny wrote: > > I am a nurse case manager at a subacute rehab center. I currently have a > > patient there with possible MS. One of her current symptoms is a band > > across her abdomen of burning pain. She describes it as feeling like it > > is on fire. The docs have discounted this as being related. I believe > > it is. > > I have fibromyalgia and have been worked up several times for MS and > > have had areas of burning myself. I have done a lot of reading over the > > years on MS and all autoimmune diseases. So I have a strong suspicion > > that this is related. > > This lady was well until about a month ago when she woke up with > > paralysis of her left leg only. Since then she has also had double > > vision, dizziness, weakness, areas of tingling and numbness and the > > burning sensation I described above. > > She has been unable to have an MRI because of severe claustrophobia. > > Even a search of this area of the country for an open MRI machine has > > been usesless. I found out that the so called open machines require the > > patient to wear a hood which is even worse than the tube. Some machines > > have a shorter tube and are also considered open but still enclose the > > head for the exam. She had a spinal tap and the hospital lost the > > fluid. She is very anxious, tearful and desperate for answers. > > Any info on the burning pain you can give me would be appreciated and > > any ideas on getting her diagnosed based on more than syptoms would be > > great also. They haven’t done evoked potentials yet, that may be > > coming. > > Jenny > — > " Don’t wait for a light to appear at the end of the tunnel. > Stride down there and light the bloody thing yourself." > www.cyberwizards.com.au/~carmel > www.cyberwizards.com.au/~jaragun
Response:
I am a nurse case manager at a subacute rehab center. I currently have a patient there with possible MS. One of her current symptoms is a band across her abdomen of burning pain. She describes it as feeling like it is on fire. The docs have discounted this as being related. I believe it is. I have fibromyalgia and have been worked up several times for MS and have had areas of burning myself. I have done a lot of reading over the years on MS and all autoimmune diseases. So I have a strong suspicion that this is related. This lady was well until about a month ago when she woke up with paralysis of her left leg only. Since then she has also had double vision, dizziness, weakness, areas of tingling and numbness and the burning sensation I described above. She has been unable to have an MRI because of severe claustrophobia. Even a search of this area of the country for an open MRI machine has been usesless. I found out that the so called open machines require the patient to wear a hood which is even worse than the tube. Some machines have a shorter tube and are also considered open but still enclose the head for the exam. She had a spinal tap and the hospital lost the fluid. She is very anxious, tearful and desperate for answers. Any info on the burning pain you can give me would be appreciated and any ideas on getting her diagnosed based on more than syptoms would be great also. They haven’t done evoked potentials yet, that may be coming. Jenny
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