Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 http://neuro-www.mgh.harvard.edu/forum/ > > i would like to know the address to the mgh forum the harvard one. i forgot it. thanks > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 Hi Sue, My name is Leanne, married, mom of two and I was just diagnosed with ACM last week. I am glad to hear you can still work. Unfortunately I had to give up my schooling(nursing). I don't have much stamina and my legs can't carry me for long distances anymore. I used to be very active. I started having milder symptoms back in 1990 but no one could find the problem. I have all your symptoms plus now I have trouble swallowing (getting worse), coughing and choking. I am developing cough syncope too. Actually I thank God for the peace He has given me. I still am concerned but trust He make a way for me to get treatment. You see here in Canada it seems that the docs won't do anything until I can't walk anymore. So I think I'll be going to Dr. Frim or Dr. Milhorat down in the States I was not undersize as a child. Average I guess you would say. ( Larger after my kiddies!!!) You had said there are things that can be done to help with these symptoms. Could you let me know? My life is and isn't changing drastically. I had to give up my schooling for now. And it is difficult (trying) to accept that this is a permanent condition ( I thought I just had one of those weird flus!!). However, overall our lives are the same. We just have to make adjustments. I can't go out to do a lot. I have to rest a lot more. Surgery may be an option. Glad to hear you are not doing too badly. Take Care, God Bless, Leanne in Canada No SubjectHi, I was diagnosed with ACM 12 years ago. My symptoms, which included double vision, dizziness, lack of balance, neck & back pain, lack of sensation in hands, clumsiness, some short-term memory loss, fatigue, and depression; have remained basically the same over the years. The symptoms are more noticable when I'm under a lot of stress. I have adjusted to or gotten used to these symptoms and have tried not to let them interfere with my work and daily life. My point is that those of you who have just been diagnosed with ACM should not think your life has to change drastically. Your symptoms may not get worse for a long time and if they do, there are things that can be done to help. I was wondering if there has been any studies made on things like growth rates as they pertain to ACM. For example, I was very small for my age. When I was 6, I weighed 25 pounds; when I was 10, I weighed 45 pounds. I finally caught up by the time I entered high school. Also, I am left handed, slightly dislexic, and I have a small head(size 6 1\2). If ACM is congenital, could these factors be relivant? Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 In a message dated 2/11/99 4:10:36 PM Eastern Standard Time, KellieH@turf- irr.com writes: << I would like to talk to someone who knows. Thanks, Kellie >>Kellie, Welcome! Where ya from? give us yer stats, maybe if u cant find the info on the list, there are us " crazy " people in every state of the union, someone will be willing to give u a call and even a visit if necessary! Annette ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 1999 Report Share Posted March 1, 1999 Vicki, The EMG is fairly good for determining delayed reactions in the nerves of the arm, HOWEVER, it cannot determine where the actual problem begins and most doctors tend to believe it's carpal tunnel, automatically. Some advice: Get xrays....ask the doctor to SHOW you on the xray exactly where the nerve is bundled. Get a NVC (?) Nerve Conduction Velocity study.....(I think that's what it's called, but Rick hasn't had one of those yet) This test is supposed to be able to test the nerves all the way back to the spinal cord and determine exactly where the nerve is damaged. Wendi <l0302090ab300a0c728a-@[204.170.26.215]> wrote: Original Article: /list/chiari/?start=13211 > >Hi Everyone, > > Has anyone ever been diagnosed with carpal tunnel by a nerve conduction > test (a.k.a. EMG). Had the surgery and then found out that they still had > carpal-tunnel like symptoms, presumably from Chiari? > > I also have been diagnosed with carpal tunnel but never had the surgery. > > I had it in both hands/arms, but being right-handed the right hand was > always worse. > > About three months ago I started to develop significant pain running from > the base of my skull (left side) down, my neck, shoulder, arm and down to > my fingers on the left side. > > I'm wondering if it's carpal tunnel, chiari or something else in my neck. > > I'm going for another EMG in about 4 weeks. > > > Thanks for any info and take care, > > Vikki > > P.S. I had a great response to my earlier query about my " head weirdness " . > It didn't make the symptom go away but all of the TLC from the group felt > wonderful and I was greatly comforted. > > > THANK YOU, THANK YOU, THANK YOU!!! > > > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 1999 Report Share Posted March 1, 1999 Hmmm.....that's a good questions Kathy. I can't say that I really know, althought I know that they can use X-rays to determine tendonities...so....I just don't know. This is what one of the neurologists told us after the second carpal tunnel dx. Wendi wrote: Original Article: /list/chiari/?start=13237 > Hi Wendi > > Not to sound stupid..but an x-ray would be the determining factor to > rule out carpal tunnel syndrome? I didn't realize nerves showed up on > x-rays..thought it was just bones. > > Kathy > > otero@... wrote: > > > > Vicki, > > > > The EMG is fairly good for determining delayed reactions in the nerves of the arm, HOWEVER, it cannot determine where the actual problem begins and most doctors tend to believe it's carpal tunnel, automatically. > > > > Some advice: Get xrays....ask the doctor to SHOW you on the xray exactly where the nerve is bundled. > > Get a NVC (?) Nerve Conduction Velocity study.....(I think that's what it's called, but Rick hasn't had one of those yet) This test is supposed to be able to test the nerves all the way back to the spinal cord and determine exactly where the nerve is damaged. > > > > Wendi > > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Does anyone with the arm/hand symptoms ever have swelling in the upper arm? Ice cold hand sometimes? ThankPatti ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Vikki, I was just going over older posts & deleting them & I noticed that you have the head/neck/shoulder/arm/hand/finger thing too. Have I posted to you already? Did you hear from others with same problem after surgery? I had decompression in 97 still have the same pain and am searching for dr or cure....can you or anyone help? EMG told nsg that my carpal tunnel is too mild to treat...hurts me like the dickens. debi d Vikki Webster wrote: > > >Hi Everyone, Has anyone ever been diagnosed with carpal tunnel by a nerve conduction test (a.k.a. EMG). Had the surgery and then found out that they still had carpal-tunnel like symptoms, presumably from Chiari? I also have been diagnosed with carpal tunnel but never had the surgery. I had it in both hands/arms, but being right-handed the right hand was always worse. About three months ago I started to develop significant pain running from the base of my skull (left side) down, my neck, shoulder, arm and down to my fingers on the left side. I'm wondering if it's carpal tunnel, chiari or something else in my neck. I'm going for another EMG in about 4 weeks. Thanks for any info and take care, Vikki P.S. I had a great response to my earlier query about my " head weirdness " . It didn't make the symptom go away but all of the TLC from the group felt wonderful and I was greatly comforted. THANK YOU, THANK YOU, THANK YOU!!! > ----------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Debi & Vikki, Rick went through the same thing and now they have diagnosed him with carpal tunnel in the right hand. Said they'd be " happy " to do the surgery and " fix " all his problems. HA. We've been there done that. He had a carpal tunnel release on the LEFT hand 3 months before his decompression. When he still had the same symptoms in his left hand after the surgery, that is when they did the MRI and found the ACM. I truly believe that it is the Chiari and NOT carpal tunnel. Obviously, we said " no thank you " to the carpal tunnel release on the right hand. Rick has had it with surgeries!! Wendi--NM wrote: Original Article: /list/chiari/?start=13755 > Vikki, I was just going over older posts & deleting them & I noticed > that you have the head/neck/shoulder/arm/hand/finger thing too. Have I > posted to you already? Did you hear from others with same problem after > surgery? I had decompression in 97 still have the same pain and am > searching for dr or cure....can you or anyone help? EMG told nsg that > my carpal tunnel is too mild to treat...hurts me like the dickens. debi > d > > Vikki Webster wrote: > > > > > >Hi Everyone, > > Has anyone ever been diagnosed with carpal tunnel by a nerve conduction > test (a.k.a. EMG). Had the surgery and then found out that they still had > carpal-tunnel like symptoms, presumably from Chiari? > > I also have been diagnosed with carpal tunnel but never had the surgery. > > I had it in both hands/arms, but being right-handed the right hand was > always worse. > > About three months ago I started to develop significant pain running from > the base of my skull (left side) down, my neck, shoulder, arm and down to > my fingers on the left side. > > I'm wondering if it's carpal tunnel, chiari or something else in my neck. > > I'm going for another EMG in about 4 weeks. > > Thanks for any info and take care, > > Vikki > > P.S. I had a great response to my earlier query about my " head weirdness " . > It didn't make the symptom go away but all of the TLC from the group felt > wonderful and I was greatly comforted. > > THANK YOU, THANK YOU, THANK YOU!!! > > > ----------------------------------------------------------------------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Patti, Rick's arm will swell at the elbow sometimes.....not neccessarily after hard work, but almost always. Wendi--New Mexico. Husband, Rick, ACM 1, Decompression surgery 7/98 with C1 & C2 laminectomy. wrote: Original Article: /list/chiari/?start=13759 > Does anyone with the arm/hand symptoms ever have swelling in the upper arm? > Ice cold hand sometimes? > ThankPatti > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 1999 Report Share Posted March 12, 1999 At 6:36 PM -0600 3/12/99, Debbie on wrote: >Hi my name is Debbie and I'm a 33 yr.old ACM patient. This is the first >time I've wrote anything to anyone about this. I thought I was bad but I >have read some stories that are far more worse than mine. I never knew that >there were so many of us out there. When I was diagnosed with this the >Dr's. made it sound like it was so rare. I typed a letter earlier but I >don't guess anyone received it. If you receive this please let me know. I >will type more later Thank you. Debbie M. Hi Debbie, Yes I did recieve your post. Welcome to the group!...........You too Kathleen. Welcome!!! I hope to exchange many questions and replies with both of you. You have found a really wonderful group of people here. It seems to me that the messages tend to slow down during the weekend. Hugs, Judy Marie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 1999 Report Share Posted March 12, 1999 At 3:25 PM +0000 3/13/99, GeorgPorge@... wrote: >I just recently found this web page and am glad I did. I have a 17 year >old daughter that was dignoised with an Chiari 2 years ago. She was >decompressed and continued to have headaches. She was then dignoised with >hydrocephalus and was shunted 7 months after the decompression. She had >several shunt failures so they tried a new shunt in her lower spine. This >shunt also gave her problems she has had 13 surgeries in 27 monthes. She >has many vision disturbances and still having haeadaches and spinal pain. >Went to the doctor yesterday for MRI results and found her Chairi is back >and causing her lots of trouble. we are waiting to see what the doctor is >going to do in the next few days. Has anyone ever had a Chairi come back >after decompression? Welcome to the group. Sounds as if your daughter has really been put through it!!!!!! There are many people who have had decompression and yet continue to have symtoms. From what I understand the surgery will not always stop the chiari symtoms. My only advice to you would be to get your daughter to a surgeon who has SOME experience with chiari/syringomyelia. Make certain that they have a few surgeries for this under their belt. Ask for proof.........ask about post-op care and ask if you can be allowed to talk to some of thier surgery patients. It sounds as if she has been through so much and, a lot of times doctors will act as if they know about it when they don't know anything except a couple of paragraphs they read in med school. best wishes for your daughter from me. She will be in my prayers. Hugs, Judy Marie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 1999 Report Share Posted March 13, 1999 wrote: (in part) ruptured discs are from the accident and nothing to do with chiari> do you agree? Hi , I have a herniated disc in the lumbar area of my spine. This happened and THEN I began having subtle symtoms from chiari. I was misdignosed for years. I think that the disc problem may be a trigger for chiari............not sure just my nickols worth. i a blockage of the csf flow which is causing my episodes. how can that ! be repaired if the blockage is at the cerebellum and the brain stem? does anyone know what they actually do??? there are more than one procedures that are done. The standard decompression is simply that they make more room for the flow by removing some bone at the back of the head and also opening the dura (covering the brain) and patch it back (much like letting out a garment-if you sew) they then put a patch in the dura. also, since the herniation of the tonsils causes them to grow into the brainstem,and those are not removed in the procedure, how is pressure released if that is still where it shouldn't be? Some surgeons cauterize the tonsils.........others don't. They decompression gives the area room and therefore the brain is not as crowded. what about the syrinx? is that just going to dissolve after surgery? That is what they hope for.....unfortunatly it doesn't always happen. When the syrinx remains and continues to cause trouble the surgeon may then choose to put a shunt inside the spinal cord to drain it.........sometimes it is drained through the stomach and sometimes through the lungs. Some people have excellant things happen and the syrinx disappears ( I guess, collapses would be a more accurate word here) I am not the best at explaining things but thought I would try to answer your questions. Darlene, Chip, or Ronny would most likely be able to explain it all better.........in fact there are a lot of links from Chip's homepage that will take you to read much information. Here is the link. Http://www.pressenter.com/~chip/chiari.htm God Bless and best wishes to you. Hugs, Judy Marie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 1999 Report Share Posted March 13, 1999 I am so sorry that your daughter has had to go through so much in her young life! It is important to know, however, that Chiari Malformation does not " go away. " It is a condition that you have or don't have. APPARENTLY (using my new-found knowledge) Chiari can be induced from a trauma, but most are birth defects. And while it does not go into remission, decompression surgery or shunts can alleviate the cause of the symptoms. I hope that you can find a neurologist or neurosurgeon with enough knowledge on the Chiari subject (very hard to do, as it is not as well know to the doctors as it is here on the web!) to know what to look for....i.e. Increased cranial pressure, CSF build up, compressed tonsils (of the brain), etc. You have come the right place!!! This is an incredible group and you will learn lots.....and if none of us have answers for your questions, by golly, Chip or Darlene or Ronny will go hunt some down for you!! Amazing people here, proving that Chiarians do have bigger hearts, too. Wendi-- New Mexico. Husband, Rick, with ACM 1 with SM decompressed 7/98 with C1 & C2 laminectomy. Currently undergoing accupuncture for numbness in extremities. Original Article: /list/chiari/?start=13932 > I just recently found this web page and am glad I did. I have a 17 year old daughter that was dignoised with an Chiari 2 years ago. She was decompressed and continued to have headaches. She was then dignoised with hydrocephalus and was shunted 7 months after the decompression. She had several shunt failures so they tried a new shunt in her lower spine. This shunt also gave her problems she has had 13 surgeries in 27 monthes. She has many vision disturbances and still having haeadaches and spinal pain. Went to the doctor yesterday for MRI results and found her Chairi is back and causing her lots of trouble. we are waiting to see what the doctor is going to do in the next few days. Has anyone ever had a Chairi come back after decompression? > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 1999 Report Share Posted March 14, 1999 how can that be repaired if the blockage is at the cerebellum and the brain stem? does anyone know what they actually do??? Sometimes the blockage can be removed simply by enlarging the area that the tonsils of the brain are trying to fit through. That's why with the decompression surgery they remove the bottom part of the skull......it allows everything the room it needs, and then the CSF may flow properly. It's one of the best shots at it, anyway, though some people continue to have CSF problems after surgery. also, since the herniation of the tonsils causes them to grow into the brainstem,and those are not removed in the procedure, how is pressure released if that is still where it shouldn't be? If the herniation is such that just removing the bottom part of the skull will still not give the tonsils the room they need, the doctor will then remove C1, and sometimes C2. This is called a laminectomy. what about the syrinx? is that just going to dissolve after surgery? While the cavity that the misdirected CSF has formed (the syrinx) will never " disappear, " the fluid can start flowing properly and go out of the syrnix, causing it to collapse, and relieving the pressure on the spinal cord. as you all can tell, i'm completely confused. i figured all of you know more than these doctors anyway. thank you, thank you thank you. you guys are all wonderful....wendy So was I !! I learned more here in a week than I did out of the thousands of articles I was thumbing through. My husband, Rick, had decompression surgery with C1 & C2 laminectomy on 7/31/98. And while his symptoms have not gone away, the syrinx has collapsed and we are relieved that further damage to the nerves may be averted. Welcome to the group, and keep asking those questions!!! Wendi (another one!) in New Mexico > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 1999 Report Share Posted March 16, 1999 Bob, The symptoms you mentioned can all be caused by SM without ACM. The spinal cord rules so many different parts of our body that any pressure at all can affect you in so many different ways. However, I think you are right to pursue it, with a doctor who knows how to identify Chiari. This could drastically affect your treatment either way. Good luck!! And welcome!! Wendi--New Mexico Original Article: /list/chiari/?start=14158 > Hello this is Bob Short again, > I have syringomelia,doc says no chiari but the more i read and hear i think i might. > i have not ben to a doc who deals with sm or chiari yet tho.got some good leads thanks to you all tho. > i have lots of symptoms tho > > sharp pains,burning pains,bad pressuer in the back of my neck,my SM is in my thoractic cord.T1 To t9 med size at T3 to T6 ,and then thins out. > also have all over my back and shooting to my legs to,difficulty urniating, > week blatter muscels to.,head tilt to the left side ,and many other symptoms to many to list all i have lots of problems sleeping to. > > im just so lost as what to do and when to do it,then i was in a car accident a month ago and this got worse overnight to ,i cant figure that out cause i have alot of new symptoms now to,it is really starting to bother me if any of you have had a accident that made things worse please shed some light for me . > thanks Bob. > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Hi Deenna, Way too often doctors say that the herniation is not enough to cause problems. I have no idea why. Are they taught this at med school? The only thing I coud suggest is try to find a dr who does not feel that way. It could very possibly mean traveling a good distance. There are many people on the list who recommend doctors and that page is linked from Chips homepage. http://www.chippressenter Good Luck, Judy Marie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 At 05:55 PM 07/13/2001 -0400, you wrote: >Hi Ladies, >Thanks to everyones responses.Ya'll always make me feel better. > >, I am scheduled for the 26th of this month with this will be >my 2nd attempt (long story). >So the closer it gets the worst off I get you see I remember the pain but >when it works I know that it will be well worth it. > >, Girl how do you find the time to post, work, and raise a family. >Plus Bd'ing. Thanks for the info on flax seed. > > >, The count down begins!! I am sooooo neverous. Don't worry about >being shy. Because I am anything but... >Our plane arrives at 3:55 pm. I am suppose to be at the hospital at >9:00am. Please look me up I want to meet a fellow sister. If not I will >find you. >I did receive your other email I have to use mom's computer not always >easy. Sorry! I am not trying to neglect you. >OK Girl write to me help me stay sane!!!!!! > > >Sharon > > > Quote Link to comment Share on other sites More sharing options...
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