Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 All of my > other symptoms are gone. > > Tina > Tina, That's wonderful news!!! I love the success stories! Gives us all hope~ Wendi ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 Hi , I had surgery on 12/18/98 at Hopkins. I had a craniectomy w/bovine duraplasty and C-1 laminectomy. My worst symptom before surgery was very weak legs, they'd give out on me after about 10 mins. of walking. They are about 50% better now. I am having other symptoms such as headaches and vision problems I attribute to surgery but I think with time and healing they will go away. Good luck, Sheila Turare2c@... wrote: > Hello, > I am curious as to how many of you have had surgery-how many surgeries-and > what kind. And please let me know how you are feeling at this point. Thank > you. > > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 In a message dated 2/1/99 2:25:52 AM Eastern Standard Time, chip@... writes: << how can some other doc claim such blatantly ridiculous success >rates? This doc probably also claims he knows everything about it, too. >> I'm going to step in and put my 2 cents in here. My NSG (Dr Tew Jr whose studies were used in this hyperbook of neurosurgery) also claims an appr 97% success rate. Myles and I had surgery within 3 days of each other(both by Dr Tew) and are both now symptom-free. had surgery within months of his first signs of symptoms. I figured my symptoms were brought on by a car wreck in 1994, but I pushed to have surgery immediately after my symptoms started to affect my lifestyle. I have also met 2 little girls who had surgery by Dr Tew's colleague, Dr Crone. Both girls are symptom free after 3 years. I know that we represent a very small percentage of the chiari population, but I also believe that we support Chip's (and several Drs) theory that surgery is successful when performed in time...and performed by a competent Dr!! I feel that alot of the Drs that perform this surgery are just not knowledgeable enough on the subject. I went to 3 different NSGs that said they would perform the surgery, but would not give me any info concerning past patients.. ie success stories, failure rate, complications, etc. Sure, any NSG is qualified to open my skull, but do you know what you're doing when you get there? Have a good night everyone. Tina ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 ><< Chip >> >YOU SOUND LIKE ONE IN A MILLION DIANA Actually, If you go to : http://www.pressenter.com/~wacma/links.htm and then click on the Hyperbook of Neurosurgery, you'll see that " 77% to 97% of patients remain symptom free at 3- to 5-year follow-up " (direct quote). Many people have the surgery and just go on with their lives. Sometimes people say " that's not true... " but NO ONE has ever offered any evidence that it's not true. Ever. ((that's because it IS true ) Of course, if it takes too long to get a diagnosis, or if the patient waits too long to have the surgery, the odds of a good outcome diminish considerably. Another quote from this article: " Some patients will continue to progress or have a recurrence despite treatment. The factors that have the greatest negative impact on outcome include the presence of muscle atrophy and symptom duration of over 2 years (Dyste 89). This argues for early treatment once symptoms develop. " For some reason people seem to disregard this proven evidence that the surgery really is quite successful, when_it's_ performed_ in_ time. Chip =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= E-mail: chip@... (ACM-1, 27 months post-op) St Croix Beach, Minnesota Home page: Http://www.pressenter.com/~chip/chiari.htm =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-= ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 > How did they decide exactly where to the > draw the line between catching it early enough or catching it too late? I thought things were so, fairly new in the surgerys, (less than ten years old) that maybe there was a for sure line ,drawn, and that caught early enough, was only when someone knew enough to check their kids out, very early, , and if there is enough evidence, of a skull malformation, and brain malformation/crowding, to warrant fixing, due to knowing future things will develope, even , was maybe what people went by. I know 's son sure was running around , exploding with energy, and very active. Didn't seem like he was having any problems. But I must admit, I did not ask if he had any bad days. Hey , youy out there? Tell us ? Terry ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 In a message dated 2/1/99 6:06:50 AM Eastern Standard Time, ronny@... writes: << a good ACM site where I can find the data I need? Like how many decomps are performed yearly - in any given country - and how many of the patients stay asymptomatic for at least a few years after surgery? >> Had to jump in here, how many docs tell the patients that their furthering symptoms after decompression aren't from the chiari, that they are healed. so they (the docs) would report those cases as successful decopressions, and the patients are healed, when in fact the actual patient would disagree. I would love to see a study based on the *patient's* point of view, rather than the NSG's ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Hi Angie, First of all..welcome to the group. We're really a nice group of people..just having some differences of opinions right now. We take it out on each other instead of going postal on our doctors. :-) As far as you definitely having chiari, but it's not yet determined if it's causing your symptoms...we have ALL heard this line of BS at one time or another. Chiari symptoms can be caused either by the low lying tonsils(which were found on your MRI), OR due to a small posterior fossa. A small posterior fossa along with the low lying tonsils can block or inhibit your spinal fluid from moving freely. A CINE MRI will show if there is any blockage. In my case, I had excruciating headaches due to a complete blockage. I had severe chiari symptoms for only 2 months before I had surgery. My symptoms came on fast and furious, and I was no longer able to work. I feel that I made the right choice by having surgery immediately. This is what I mean when I talk about having surgery " In time " Because I had surgery almost immediately after the first signs of debilitating symptoms, I have no permanent neurological damage and am totally symptom-free. (I know I'm opening myself up for comments here, but this is my opinion) My surgery was Dec 18, 1998. One thing I must stress though, is finding the right doctor. Gut feeling is so important. If you feel any apprehension while talking to your doctor...keep looking. As I stated in an earlier post.. " Sure, any NSG is qualified to open my skull, but do you know what you're doing when you get there? " There are some really good doctors out there and there are some really bad ones. Don't be afraid to ask them questions about past chiari patients. If they aren't willing to give you the info you request..keep looking. Have you looked through our list of recommended Drs? That's a great place to start. Please feel free to e-mail me with any questions. Again..welcome to the group! Tina ACM1 ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Okay everyone, here we go. First of all, I'm new at this. Second of all, I'm probably a youngun' here; 20 years old. I was born with a birth defect called spina bifida (sorry but that would take way too much time to explain). Anyway, now I have been diagnosed with ACM. However, I will not find out until later (hopefully this evening) whether I have level one or two. Anyway, I found out about this two years ago after being diagnosed with and having surgery for a tethered cord (ACM is common in people with spina bifida). At that time I was asymptomatic, except for occasional neck and head pains in the back of my head which were mild (and which I was told were just " weak muscles " ...not that I believed them in the first place. Gimme a break!) Recently, I began having pains not only in my head and neck (which have worsened) but also in my upper back and arms. Here's the problem. None of the pain is severe, but it is always there, as in 24/7. My arms feel as if I am doing major workouts all the time. So I have read everyone's e-mails for today. Of course, I'm confused. Most people are talking about having sysymptoms for years. For me, the major ones have only shown up for about two months. I hear a lot of you talking about getting surgery soon and then adding on the fact that you had symptoms for a couple of years! Two months has been enough to drive me nuts! Geez! I can't win. If I have surgery, I risk making things worse. If I don't things could get worse and I could end up needing it later anyway! So basically to start off, could anyone define " having surgery early " . PLEASE DO NOT START AN E-MAIL BATTLE OVER THIS QUESTION. I'm looking for friendly advice (even if it's all different). I know there are no definite answers. (Why the heck do you think I'm here in the first place?) Okay, I guess I've gone on way too long already so I'll stop for now. Thanks, Angie P.S. Oops, one more question. How definitive were everyone's test results? My doctor said I definitely had ACM, but the results don't show for sure whether that is causing my symptoms. Is that normal? I mean I know he was just trying to cover his a@# in case I did have surgery and nothing was fixed, but are Cine MRI's supposed to be definitive or not? HELP! ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 >Geez! I can't win. If I have surgery, I risk making things worse. If I >don't things could get worse and I could end up needing it later anyway! So >basically to start off, could anyone define " having surgery early " . Hello and welcome to the list. I trust you will find that while we do have some spirited dialogue and differences of opinion, we don't have email wars. Everyone here is here because they either need help or want to help. Now as to your predicament. Having surgery early would mean not waiting until the symptoms you have become disabling or debilitating. Until your life is nothing but laying on the couch waiting to take the next pain med. The best indicator as to what is going on with your ACM is not the MRI. It is you and your symptoms. Are they getting worse? Is it more difficult to live with them? Do they respond to other measures? (such as pain medications or muscle relaxants?) I have found that the faster your symptoms are getting worse, the faster you need to take action. That action may be getting surgical opinions or having surgery itself, but never sit on a deteriorating medical situation. >Angie >P.S. Oops, one more question. How definitive were everyone's test results? TEst results can only show the small posterior fossa or the herniation of tonsils. Since they really are not clear exactly why and how symptoms are created from this (although they know it has something to do with interruption of the CSF flow and compression of nerve and cerebellar tissue as well as inflammation), they really can not tell for sure by any scan what or how severe the symptoms are. Sometimes a really herniated cerebellum shows on a scan and the person has little or no symptoms. The skull base and cervical spine area is directly linked by nerves to the head, neck shoulders and arms...problems in these areas are likely to be caused by cerebellar pathology...like the ACM. This can include, pain, numbness, weakness, tingling, spasms, electric like jolts etc. Other things that the cerebellum organises that would be affected included tremors coordination, balance, swallowing, etc. Each person must determine at what point their symptoms become something beyond a nuisance and begin to interfere with daily life. Do not be put off or confused by all the various situations you will find here. ACM is unique for everyone. Some people suffer symptoms for years...others fall or have an accident and become symptomatic overnight. There have been reports of people developing symptoms from a sneeze! Other babies are born with dreadful symptoms and require immediate surgery. It is not the same for any two people. Also just because some people are not completely *cured* by the surgery, does not mean it has not helped them. It is not a perfect answer, but when done by an expert, it can help manage symptoms and prevent new ones from coming. Although I still have problems with swallowing etc, my last surgery greatly improved the severity of my head pain and the vomitting it brought. So I am not *cured*...but I am better. Would it be worth it to you to have the surgery if you were made not perfect, but better than you were? If so, then talk to your NSG about the possibilities. If the symptoms can be managed by diuretics, pain meds, etc, then find someone who will work with you on that. You deserve the best quality of life you can get. I hope this has been helpful, you have been through a lot. Again, welcome aboard... Darlene " A man is what he thinks about all day long. " World ACM Association... http://www.pressenter.com/~wacma/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 >Rick first started showing symptoms in November of 1997 and had decompression >surgery July of 1998. Fast enough? Apparently not. Maybe there are more >subtle signs that we weren't seeing...... > >Wendi Hi Wendi and group, I think the key word here is subtle. I can remember going to the Dr. so many times with symptoms of chiari that I am still learning about. He would say oh thats arthritis or tendenitis or nerves. when, I could not turn my neck without pain in my shoulder and neck. I would go home thinking ok.....guess so! This went on for years. I am sure that he beleived I was a hypercondriac. When the headaches began I went many times only to have him tell me it was stress, etc. By the time I was diagnosed with chiari ..........the sryinx was already 9 vertabraes long. He still had no idea what was going on and made no effort to find out so he could tell me. He just said " Oh You have a birth defect " and the way he said it as if it was a rash or something bothersome but not really anything to worry about, made me think ok this is something I have to live with........Sheeeeeesh! He didn't tell me it would or could progress. I don't think he took the time to find out himself. (The Jerk) The sryinx is now 11 vertabras long. I had my diagnosis in June of 96........I found out what chiari is in July of 98........ when one day I was in so much pain I could scream and nothing was helping.........I decided to get online and find out about this birth-defect and see if there was a band-aid for it........... Hmmmmmm imagine my surprise!!Oh well you don't have to imagine.........you have all been there!! Yes, Chiari is subtle.......very subtle, in the beginning. Hugs, Judy Marie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 wrote: I see someone posted that they went in at the first > signs of symptoms and has recovered nicely. How anyone would have the > foresight to do that astounds me. I guess having a really good doc goes a > long way. > > ronny > > Rick first started showing symptoms in November of 1997 and had decompression surgery July of 1998. Fast enough? Apparently not. Maybe there are more subtle signs that we weren't seeing...... Wendi ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 >>At 06:29 PM 2/1/1999 -0500, Darlene Long wrote: I trust you will find that while we do have >some spirited dialogue and differences of opinion, we don't have email >wars. Everyone here is here because they either need help or want to help. Yes. If the person's reference was in regard to the discussion Chip and I were having, I want to make sure no-one gets the wrong idea - despite our difference on some matters, I respect Chip's opinions more than just about anyone I've ever known. We've been friends long enough that we can have " spirited dialogue " without any ill will. And that issue in particular has divided the opinions of our membership since day one, so I thik it's healthy and educational to discuss it openly on the list so that everyone can weigh the issue personally and eventually make their own decision that I'm right. ronny ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 In a message dated 2/2/99 1:51:17 AM Eastern Standard Time, otero@... writes: << I see someone posted that they went in at the first > signs of symptoms and has recovered nicely. How anyone would have the > foresight to do that astounds me. I guess having a really good doc goes a > long way. >> My symptoms hit hard Oct12....was diagnosed Oct15....spent 4 weeks going to different Drs...found Dr Tew on Nov 22 and had surgery Dec18. Anyone else want to come to Cincinnati and get " fixed " They work miracles here. Tina ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 >> Oops, one more question. How definitive were everyone's test results? My doctor said I definitely had ACM, but the results don't show for sure whether that is causing my symptoms.<< The results, would have to be narrowed down to the specific part of your brain, brain stem, or other effected areas, spine, nerves, what else? In order to tell you what is causing the symptoms. I think they know it's pressure , and even physical contact, smashing things. But I wonder how positive they are about exactly where a nice thick , or bump like spot on the inside of the skull , is protuding against certain areas? Or maybe it's hard to tell what will return, and what will not, reguarding possibly non permenent damage , i have heard and understand about very long lenths of time in some cases, for things to , get opened up and flowing right again, and then whether they get over the squishes, and or kinks. Well I'm thinkin too hard again, better stop that. I can tell I'm gonna need help. Peace and bedtime, Terry ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 Hi all, Just to be an " exception " , I was diagnosed and treated within a month of first known symptoms, had first op. 2 weeks later. No improvement, no change, and my doctor said it was to try to prevent things from getting worse... since I also have SM and arachnoiditis which has progressed, I cannot say with any certainty that the Chiari was " fixed " for any length of time. I sometimes wonder what would have happened if I had left it alone at the time, but have concluded I made the right choice. I suspect I have the same " subconcious " leanings about the statistics as Ronny... It seems from my personal, unscientific experience, that you can get better with surgery, but not indefinitely, that symptoms will return. Can't help being subjective in such a situation. Luella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 I completely agree with Luella! As you all know I had my surgery back in 1987 for both ACM and Syringomyelia. I did some what better for two years..... and now.... its like a downward maze..... and it just seems to pick up speed as you go..... I had my Neurologist appointment today... I flunked some of his routine tests so he wants to schedule a longer visit with me, to do the whole works on me!! He hasn't done that in a while! He wants me to talk to my old surgeon before having Dr. Milhorats procedure.. My headaches are getting worse.... and so on and so on! Pretty depressed these days! Hugs Robin Luella Switzer wrote: Hi all, Just to be an "exception", I was diagnosed and treated within a month of first known symptoms, had first op. 2 weeks later. No improvement, no change, and my doctor said it was to try to prevent things from getting worse... since I also have SM and arachnoiditis which has progressed, I cannot say with any certainty that the Chiari was "fixed" for any length of time. I sometimes wonder what wouldhave happened if I had left it alone at the time, but have concluded I made the right choice. I suspect I have the same "subconcious" leanings about the statistics as Ronny... It seems from my personal, unscientific experience, that you can get better with surgery, but not indefinitely, that symptoms will return. Can't help being subjective in such a situation. Luella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 Kathy, We wish you all the best in your visit to the neurosurgeon.......we had a good experience with ours. He was the first one to actually say " Arnold Chiari Malformation. " After our visit to him, all the other docs jumped on the diagnosis bandwagon and agreed.... " Oh yes, ACM....I see it. There it is. " hmmmmmm. When we went to see the neurosurgeon it was not because we were entertaining any thought of surgery, but our wonderful family doc suggested that we might find some answers with the nsg, and we wouldn't have to decided in favor of the surgery, but the nsg would be able to better explain everything to us. He did! My husband had decompression surgery 7/31/98 and although we have continued to battle the symptoms (some got a little worse) we would still go through it all knowing how it would turn out. We are not sorry we made this choice. I hope you get some answers, take care! Wendi--NM wrote: Original Article: /list/chiari/?start=12943 > Well, I went to my neurologist for a review on my recent MRI's. He also did > an exam. He said if he were me he would have the surgery. It has been two > years since I have been diagnosed and my symptoms are getting worse, > especially headaches. He is referring me to a Neurosurgeon that he works > with, just for an evaluation. > I was wondering if there usually is a big difference between a > neurologist and neurosurgeon? I am very nervous about even considering > surgery, but trust my neurologist as he has been very supportive and > informative. > He said that it would be a " suboccipital craniotomy " sp.? And that is it > not a complicated procedure for the neurosurgeon. He also said that by having > the surgery I could prevent further damage of which becomes irreversible the > longer I wait. > I'm confused and nervous. I really didn't think I would ever consider > surgery but am worried about what will happen if I don't and do!! I probably > shouldn't even think about it till after my evaluation with the neurosurgeon > in March. But I wanted to talk with all of you since you have become part of > my " peace " and comfort. > Thanks for any > input > Kathy > in Ohio > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 Hello: My son reciently had a surgery, the doctor removed the shunt and poked a hole in his brain so the fluid would flow down through his head into the abdomin, for the most part he seems better but I'm wondering if it has effected his balance or something, he's two years old and is haveing a harder time trying to learn to stand or even sit up correctly. Has anyone out there heard of this procedure? I can be reached and jpwilson2@... Lots of Hugs. Pat ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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