Guest guest Posted January 20, 2000 Report Share Posted January 20, 2000 I have been seeing a neurosurgeon here in Tucson, AZ by the name of Dr. Jack Dunn. And what medication would be best for symptoms of left sided tinglingness, pain and numbness? My PCP does not like for me to have pain killers. Thank you for the help! - Re: New to list Hi Patti Welcome to the board, you will get a lot of response from board. All I can tell you is that when I started researching ACM about a year ago, I felt like my world was being pulled out from under me. Now that I know what I have, I am dealing with it the best I can. One thing you HAVE to do if MRI's show any Chiari no matter what size it is and no matter what your NSG or whoever says, see one of the Doctors that are recommended on the WACMA home page. Read everything you can, talk to people, step back from all the new information for a while and then go back and re-evaluate what you have read that applies just to you and not all the things that can or have happened to others. Use their experiences as a guide line not gospel. Hope this helps and write me any time privately if you like and I will respond. Also have lots of links for information and time to find answers to many of your questions that will be coming up. Good Luck and Hugs from Michigan Carol Temperance, MI (Toledo OH) ACM1 7MM /2mm Syrinx Planning surgery this summer ------------------------------------------------------------------------ WACMA Site: http://www.pressenter.com/~wacma Your Personal support group member page: http://www.eGroups.com/group/chiari/ **Avoid List Congestion: Unsubscribe from this list: mailto:chiari-unsubscribeegroups Contact list mgmt: mailto:chiari-owneregroups ------------------------------------------------------------------------ -- Talk to your group with your own voice! -- /VoiceChatPage?listName=chiari & m=1 ______________________________________________ FREE Personalized Email at Mail.com Sign up at http://www.mail.com?sr=mc.mk.mcm.tag001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2000 Report Share Posted January 20, 2000 Thank you, I mostly have left-sided tingling and pain, daily back of the neck headaches,scoliosis and constant backaches. I also have Mitral Valve Prolapse. On meds for the heart only - Re: New to list Patti, I went misdiagnosed for 32 years. I was only properly diagnosed because my son was discovered to have chiari. Through this we also found out my mom has chiari. Before my surgery I could not walk. My legs hurt so bad, they were also very heavy. They felt like lead. So. were. my arms. I had ALOT of pain and pressure in my head.Everytime I bend over I blacked out. I had constant nausea. My whole left side was numb. I could not move my neck. I had swallowing difficulties, I could go on for hours about symptoms. I was misdiagnosed with fibromyalgia, MS, lupus, brain tumor, etc. No dr. ever thought about doing an MRI. They can be such idiots. What are your symptoms? Do you have a diagnosis of anything right now? My nsg is DR> Frim at University if Chicago. I now work with him on clinic days, which is Thursday. We are also working on a study woth fibromyagia patients. We want to see how many actual have chiari. Let me know if I can help. Newcomb New to list > Just writing to say hello, and just want to know how y'all felt when you > were firsst diagnosed? Will be having an MRI in a couple of weeks, and > really just want to know what this condition is all about > > Hello to everyone. > ______________________________________________ > FREE Personalized Email at Mail.com > Sign up at http://www.mail.com?sr=mc.mk.mcm.tag001 > > > ------------------------------------------------------------------------ > WACMA Site: http://www.pressenter.com/~wacma > Your Personal support group member page: http://www.eGroups.com/group/chiari/ > **Avoid List Congestion: > Unsubscribe from this list: mailto:chiari-unsubscribeegroups > Contact list mgmt: mailto:chiari-owneregroups > > ------------------------------------------------------------------------ > -- Create a poll/survey for your group! > -- /vote?listname=chiari & m=1 > > > ______________________________________________ FREE Personalized Email at Mail.com Sign up at http://www.mail.com?sr=mc.mk.mcm.tag001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2000 Report Share Posted January 22, 2000 I am seeing him for cervical radiculopathy and for neck headaches. What were Toms symptoms, if I may ask? Patti - Re: Re: New to list Patti, Hi, my name is Carol, my husband, Tom, is seeing Dr. Dunn for his ACM I malformation. We've only seen him once and he seems to be fairly straight forward, except for a misunderstanding on our part in December. Tom was instructed to clear up acne in the surgical area, take care of some skin tags on his back and get dental work done; all to lessen any chance of infection when the operation is finally done. Tom is going back in February and we are hoping for a surgery date at that time. Dr. Dunn doesn't prescribe pain medication. Tom has a really good PCP who has been wonderfull in trying to find some way to deal with pain. He is at this time on a duragesic 100 patch, but he still has break-through pain. When we have gone to emergency rooms we have run into doctors who didn't want to treat the pain with narcotics. I feel that it is really wrong for a doctor to enforce his or her personal opinions over that of a patient's needs. You may want to think about changing your PCP. If it's not too personal, may we ask the reason you are seeing Dr.Dunn? Feel free to write back !! Carol Re: New to list > > > Hi Patti > > Welcome to the board, you will get a lot of response from board. All I can > tell you is that when I started researching ACM about a year ago, I felt > like > my world was being pulled out from under me. Now that I know what I have, I > am dealing with it the best I can. > > One thing you HAVE to do if MRI's show any Chiari no matter what size it is > and no matter what your NSG or whoever says, see one of the Doctors that > are > recommended on the WACMA home page. > > Read everything you can, talk to people, step back from all the new > information for a while and then go back and re-evaluate what you have read > that applies just to you and not all the things that can or have happened to > others. Use their experiences as a guide line not gospel. > > Hope this helps and write me any time privately if you like and I will > respond. Also have lots of links for information and time to find answers > to > many of your questions that will be coming up. > > Good Luck and > Hugs from Michigan > Carol > Temperance, MI (Toledo OH) > ACM1 7MM /2mm Syrinx > Planning surgery this summer > > ------------------------------------------------------------------------ > WACMA Site: http://www.pressenter.com/~wacma > Your Personal support group member page: > http://www.eGroups.com/group/chiari/ > **Avoid List Congestion: > Unsubscribe from this list: mailto:chiari-unsubscribeegroups > Contact list mgmt: mailto:chiari-owneregroups > > ------------------------------------------------------------------------ > -- Talk to your group with your own voice! > -- /VoiceChatPage?listName=chiari & m=1 > > ______________________________________________ > FREE Personalized Email at Mail.com > Sign up at http://www.mail.com?sr=mc.mk.mcm.tag001 > > > ------------------------------------------------------------------------ > WACMA Site: http://www.pressenter.com/~wacma > Your Personal support group member page: http://www.eGroups.com/group/chiari/ > **Avoid List Congestion: > Unsubscribe from this list: mailto:chiari-unsubscribeegroups > Contact list mgmt: mailto:chiari-owneregroups > > ------------------------------------------------------------------------ > -- Easily schedule meetings and events using the group calendar! > -- /cal?listname=chiari & m=1 > > > __________________________________________ NetZero - Defenders of the Free World Get your FREE Internet Access and Email at http://www.netzero.net/download/index.html ______________________________________________ FREE Personalized Email at Mail.com Sign up at http://www.mail.com?sr=mc.mk.mcm.tag001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Hi, I am going to try the low oxylate diet with citracal as soon as I get results from a urinalysis. My first physical therapy appt. is on Wednesday. I am 45 and have had this since I was 17. The only thing done for me up until now was a tube of lidocaine. I thought I was alone in this pain but now that I know that I am not I am going to actively seek help. How bad is the diet? I love chocolate. I'm really sorry that your surgery didn't help. Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Welcome to the group. You will find lot's of caring and supportive women on this list, unfortunatly we all have a common bond so we know what you are going through. I am sorry that your surgery was not a success, hopefully you will find your cure soon. Take care, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Well, it looks like you joined in at the right time. Seems like surgery, and past surgeries have been a main topic the past couple of weeks. I am sorry that yours did not go well, if it makes you feel any better...you are not alone. I am 22, had surgery in 1998, and now have to have another surgery. I know what emotional/physical pain you are going through, or at least can have empathy. Take care, and let us know how the diet and other methods go for you ~mindy~ _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Welcome to our little support group:) I am sorry to hear that your surgery was not a success. It didnt make your symptoms any worse did it? I am curently recovering from a vulvar vestibulectomy. What type of surgery did you have? Did you have your vestibulary glands removed? Was there skin grafts? I just had all of my vestibulary glands, the bartholins glands, and the hymen take out (as well as some fibromas, and some scar tissue that really did not need to be there). A vaginal flap was made from the perinium and tucked in and stitched to the vulva to prevent tearing. I hope you find the treatment that is right for you. Meanwhile this group is great at giving you all the support you need. Bunny Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Hi , welcome to the list! Sorry you have to be here, but you've found a great bunch of people. First, your numbers are way too high. The ideal glucose level is to stay around 100 as much as possible to avoid complications later in life. Did the doctor give you your hbA1c number? (That's glycolated hemoglobyn to newbies.) Do you have a glucose meter? Get one! At first you'll be testing just before you eat, then one hour AND two hours after eating, at each meal. Keep careful notes as to what you ate so you can eliminate those things that raise your glucose too high. After you learn what spikes your glucose, you won't have to test as much. Diabetes is a real life change! Get the book " Dr. Bernstein's Diabetes Solution " by K. Bernstein. It's the best book ever written on diabetes, for both Type 1 and Type 2. It'll give you a better understanding about the disease. Available at www.amazon.com, sometimes on www.ebay.com for less money, or you might be able to find it at www.half.com for less money too. You can also try the local library. Some of us are on a very low carbohydrate diet, some of us are on a moderate carb diet and some are on the ADA diet. You'll find out which one is best for you by all the testing you'll be doing. You won't learn everything overnite or in even a week or two, but keep plugging away at it and ask any questions you want. We were all beginners at one time too! In the meantime, stay away from sweets, and try to lower your intake of bread, rice, pasta and potatoes to get your numbers down faster. If you're overweight, losing just 10 - 15% of your body weight will lower your insulin resistance, giving you better glucose numbers. Good luck! in So. Calif. > Hi. I am new to the list. I just found out Friday that I have type 2 > diabetes. I am trying to learn all I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Amy, I can echo what Shirley had to say because it has worked for me. If you rely on drugs and short term weight loss, the weight will come back and then some. This is a lifetime disease and needs a lifestyle change. It took me about a month to adjust to changing my eating habits to: low fat, little salt, controlled carbs and better food choices. You would be better off talking to a diatician and spending the money you would have spent on drugs buying healthy foods that are going to sustain you and lower your blood glucose. Exercise has brought the weight down and kept it off. I walk my dog 2 miles (almost) every night, the only time I miss is when I am out of town. I have walked as late as 1 am. I realize this is a lifetime committment to myself, no one is going to do it for me and I am doing it because I want to live. Hang in there. Stan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 <<The last time I weighed, I guess a month ago, I was 295... so I have lost 83 pounds since a little before May.>> Way to GO, Shirley!!! WOW you have motivated me!! And I would add one more thing to your list of suggestions for cactusamy and the rest of us: TAKE YOUR MEDICATION AS DIRECTED!!! LOL And I second the suggestion to forget about diet pills. It's not a temporary fix. It's a lifetime commitment to my health!! You can do it, Amy!! Carol Re: New to list In a message dated 10/9/02 4:52:29 PM Eastern Daylight Time, cactusamy@... writes: > There is > no way I can afford to pay roughly $100.00 a month for > medication plus the office visit of $50.00 a month. > Does anyone have any suggestions or advice? > > I have advice... but it may not be what you want to hear. Unfortunately, these drugs only give you temporary help and this is a life-long problem... needing a life-long answer. If you are really serious about a life-style change, that's really the most important thing you will need... a desire to be healthy and then to follow through by doing what you need to do to make that happen. I can't really tell you how to eat but what I can do is tell you what has worked for me. I went to a diabetes educator (The Joslin Center) at a local hospital for diabetes training. It was for 2 nights, 4.5 hours a night. I learned SO much and had a good place to start. Then I started posting to THIS group and asking all kinds of questions and slowly began to see that this was do-able. After I was first diagnosed, I completely overwhelmed with stuff... but now it seems like second nature to eat the way I eat and to move and exercise on a regular basis. I don't always LIKE doing either of those things... because I am by nature a very self-centered, lazy person. That's what got me to 378 pounds. So I am sticking to my food plan and I walk every day... a little more each week. I started out very slowly because I have arthritis but have built up quite a bit in the last 5.5 months. Another thing I do consistently is to check my blood twice a day and RECORD it. I go to my doctor every 3 months for an A1c to see what my 3 month average has been and to keep in close contact with my doctor so he can monitor my other blood levels. In the months I have been on this plan, my blood pressure has normalized, my triglycerides are normal, cholesterol is normal and my blood glucose is down to 6.2... which is much better than it was. My goal is under 6. The last time I weighed, I guess a month ago, I was 295... so I have lost 83 pounds since a little before May. I have a long way to go but I have HOPE for the first time in a long time, that my life is going to turn around and I am going to have better health than I would have had if I hadn't of gotten diabetes. It scared me into changing. So let's see... low calorie, low fat, low sodium, moderate carbohydrates, HIGH fiber, diet... and exercise... and diabetes education... and testing your blood... and eating smaller meals... not overloading your system... and posting on here and asking questions... and becoming informed by reading all you can on diabetes so you can self-manage this disease... eat LOW glycemic foods instead of HIGH glycemic... That's all I can think of right now. I guess the most important thing Amy is to do what you just did... start making a change today... even if it is to just cut back on carbs and take a walk. And tomorrow, do a little more. Anything you do toward better health is going to make a difference. You have my support and if you need anything, please post or write me at sjgrace@.... I don't have all the answers but I will be here to help you find them. Take care and I will keep you in my prayers. Shirley Quote Link to comment Share on other sites More sharing options...
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