Discussions By Condition: Medical Errors

Here's A New One For Everyone!! Cm 1 Pseudotumor Cerebri Syndrom

Posted In: Medical Errors 13 Replies
  • Posted By: Amanda M.
  • July 22, 2008
  • 01:09 AM


CM1- chiari I malformation.

If anyones ever heard of this, please reply, I have been from doctor to doctor (Neurologist and neurosurgeons) for the past 2 years and no one will treat me. WHY? Because no ones ever heard of it! They dont kjnow how to treat me. And the doctors that have heard of it, are all pediatric doctors. i AM LITERALLY SUFFERING! If anyone knows anything about chiari malformations and or CM 1 PTC, please reply!


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  • What exactly are you saying? Have you received either of these diagnoses? How were they made? Pseudotumor is a common diagnosis in adult females. It really isn't a pediatric diagnosis. Chiari malformations range in severity and thus may not be symptomatic. If you have a silent chiari malformation it is possible that it would be discovered as an incidental finding on workup for an unrelated issue. In any case, both of these issues, (Psuedotumor cerebri and Chiari malformations) are not exotic conditions and are extremely well known in the medical community. Any doctor would be familiar with them as they are tested frequently in medical school. I would consider them common knowledge. Get a different physician or different insurance plan as yours would seem to be overrun with incredibly inept MDs.
    fewd4thought 126 Replies Flag this Response
  • I agree that if you go to a neurologist and have had MRIs and Cscans done then can look at quickly for diagnosis. I was ruling this out during my quest of finding out what was wrong with me. Luckily this is not one of the problems. However I do have problems with barometric pressure changes. :eek:
    Abbydoodle 138 Replies Flag this Response
  • FEWD4THOUGHTare you in medical school? I was just wondering, because its just so funny how I can post this and within what, a day here you reply to me with knowledge that seems you have medical knowledge, but for the life of me, I cant find a doctor who can treat me. Why is that? I like you.Pseudotumor cerebri syndrom, I know this is a common thing umong adults. But with my excpierence and what I'm going through, when you through the CM1 in there, I dont think its that common. I know CM1 used to be rare, but is now more common, trust me, I know everything about it. Heres my problem, And I sure would like your opinion afterwards. I am a 28 year old female. Almost 3 years ago I was diagnosed with a CM1. My MRI only showed I went down 4mm. I was having such bad symptoms that I went to go see a neurosurgeon. The only reason I got into see him w/o a referal was b/c my sister worked for him, and bot am I glad. My basic symptoms and most severe included, coordination problem, balance problem, vertigo, vision disturbance, chronic migraines, fluid like feeling in my ears, nausea, vomitting, depth perception problem (things appeared closer than what they where, at times they also appeared to be moving when not.) light sensitivity, noise sensitivity, smells that triggered migraines, cracking sounds in my neck, numbness and tingling in my hands and fingers and in my face. There is more, but I could write a book with them! It was bad. It got to the point of being so debilitating I couldn't do anything. I was gettin gin trouble at work b/c I had to take so much time off! I went to see this neurosergeon and he did another MRI just to make sure there was nothing else causing the problem, and there wasn't, but he did make the discovery that my spinal column was more narrow than usual, and b/c of that he decided to do the occipital decompresstion surgery. When he did the surgery he made another discovery, I didnt go down 4mm, I went down 10mm. On September 26, 2006 almost 2 years ago now I had the surgery. 8 weeks later, and 8 weeks exactly to the date my migraines came back. Slowly all the rest of my symptoms came back. The only difference is, that now, my migraines are different, I was also diagnosed with occipital nervgalia. Eventually My medication I'm on started to not work, relpax, baclofen, topamax and much more. My migraines are now 10 times worse and consist of pressure. My ears hurt so bad and are stuffed all the time, I get this feeling that starts in my nose and travels up into my forehead and gives me a migraine that hurts like ***l. I get so dizzy I cant stand, I get nauseaded that meds dont help, My balance is uncoornated, I cant walk a straight line, I walk into walls, my vision is blurry all the time, when the pressure get s really bad it puts pressure on my jaw and makes it hurt really bad which in turn makes my teeth hurt which makes it hard to eat. When the pressure gets to that point I all so get these pains in my spine and whn I turn my neck I get shooting pain down my spine. Theres one thing that makes it all go away, thats if I lay down flat on my back, no pillows nothing. The secons I sit up, they all come flooding back. I cant even describe the pain it so bad. If I could releave the pressure off my brain, i would be fine. The other day I was searching the internet and found an article titled " CM 1 pseudotumer cerebri syndrom" Do I have this? I dont know, But I feel I do. It was a study done, and people who have had a failed decompression surgery such as myself have had another surgery to shunt the CSF rerought it. These people all had their symptoms back about 6-8 weeks after the decomp surgery or just had no relief at all. I feel into every catagory in this artical except one, and thats b/c I've never had an LP to get the Velocity of my CSF checked. If it comes up high, I have it. Problem is, I cant find a doctor in the state of wisconsin who will treat me b/c they all dont know how. Its not my insurance, they all have never heard of CM1. I cant find a doctor that can treat me, therefore I cant find one who will do the LP to find out if I have the CM1 PTC, this could be my cure! I am literally suffering day in and day out. I have had this migraine for 3 weeks straight! If you can offer me any feed back or anything I welcome it!-A
    Amanda M. 3 Replies Flag this Response
  • I'm a doctor. Honestly, when i was reading over your first post, i didnt know what you were talking about when you wrote cm1 psuedotumor, cm1 chiari, but i thought it was just some sort of funky notation that you were using, like... complaint 1) psuedo tumor cerebri, complaint 2) chiari..if you feel like it, email me at fewd4thought@gmail.com I might not be able to help you myself, but I will certainly point you in the right direction, K?
    fewd4thought 126 Replies Flag this Response
  • Yeah, sorry. I got it now. Chiari Malformation 1. go ahead and email me. I can explain to you why people won't tap you i think. you dont have ptc either. the whole thing with ptc is there is normal cerebral anatomy, and you dont have normal cerebral anatomy. i would like to hear more about your case though, so email if you like.
    fewd4thought 126 Replies Flag this Response
  • Yes, Fewd4thought it threw me too. I am not doctor but only a patient that has been on a 30 year odessey and finally self diagnosed myself in 2005 using this website and back linking and read several autopsy reports that matched my problems. Yep, I found me dead. From there I asked my neurologist had he heard of the disorder --nope. Back to the internet. I was lucky that a university in our city had one specialist that is known internationally. Made an appointment. He is a pediactric metabolic and genetic specialist. Walked in and told him what I had. He asked who had diagnosed me. Told I did. After living in ***l all my life, I figured it out. Through the grace of God, my mother, all my trials and errors with about 150 doctors, alternative medicine, etc. Through tests and biopsy he confirmed my diagnosis. I have a urea cycle disorder --ornithine transcarbamylase dificiency. My liver works about 5% and sometimes a little more. I have a lot of disorders and such that go along with such a disorder because of it being at the mitochondrial level. I have thyroid, fibromyalgia, chronic fatigue, sleep apnea, seizures, migraines with magnificient auras, broken bones, lots of CNS problems including memory loss, word retrieval etc. yet my IQ is extremely high. No brain damage on that. Lost 7-8 babies. have lots of skin problems. Have balance issues. Ringing in ears. If you look up the all the things associated with each of the above disorders as well as my main disorder -- this is why doctors could never ever figure it out. It took this website back when the format was much better for research. But somehow I lived. There are about 7-10 women my age that have lived now. I hope with medication we can blow past those I found listed in autopsies.
    Abbydoodle 138 Replies Flag this Response
  • It's great that you've found a doctor on here willing to help you figure things out. If you need emotional support or want to talk to others with Chiari 1 who may be able to refer you to a doctor near you, I high recommend the forum on Neuro Talk : http://neurotalk.psychcentral.com/index.phpEveryone there is really nice and supportive and will help you through your struggles while you figure out how to get treated. Look me up there too. I'd be happy to be your cyber-buddy for moral support.DL
    dizzy lizzie 192 Replies Flag this Response
  • I too have heard of this. I had extreme headaches that were not migraine in nature. I suffered with them for 8yrs. So, I knew what a migraine was. I searched and came across Pseudotumor Cerebri. I was checked for this by my Neruologist but was fine. My diagnosis I just found out after 15yrs of misdiangois is Chronic Lyme Disease. That is what was causing my severe headaches. I had a encephalitis type of headache due to the Lyme and it's coinfection : Bartonella. NOT FUN!!! I am just now starting treatment..... I have a LONG road ahead of me. I agree. If your doc does not know. Move on. I have found out through my 15+ years of struggling with my illness that doctors are sometimes LAZY!
    zephyr 10 Replies Flag this Response
  • Zypher, Where do you live? Am curious how you were exposed to the the ticks and how they found 8 years later. Do you remember the tick? No jokes am really curious. One of my doctors had a partner that decided to go into Lyme disease treatment, he moved from her offices to Colorado and that is all he treats now. Not that I don't believe you, was getting suspicious in our town. He was telling entire families they had lymes. But he made sure each one had their own appointments so he could carefully bill for the money. I know of one family that finally quit. He had told the husband, wife, and three children they had lymes. I truely believe it exists, I just am curious how they diagnose now. Have not been around a doctor that treats it for about 5-6 years.
    Abbydoodle 138 Replies Flag this Response
  • MSN has a group specifically dedicated to those of us suffering from ICH. The new term for Pseutumor Cerebri is Intercranial Hypertension. It is exactly the same thing. It is supposed to be common is overweight females. This is not always the norm. (like Me) I have had the condition since 2002. I truly feel for your suffering. Most times it is not diagnosed until you have eye changes. Unfortunately those of us that have chronic high cerebral pressures, the optic nerve is relatively unchanged to the naked eye. I see a neuro-opthomologist at UAB Medical. (birmingham,AL) I am very lucky. I woke up after monthes of misdiagnosis and was completely blind. I have regained some of my sight (hence the lucky part) I do suffer from seizures, because of the extended seizures I have some brain injury. No one can tell me if the seizures were from the EXTREMELY high pressures but that is what they THINK it is. I'm on seizure meds and that has helped tremendously. Don't skip the meds. They will change your taste, but it is better than the alternative. I have email if you want to talk. pbaker04@gmail.comI guess we can put our email here. This is the first post I have ever put up. I saw your post and decided to answer it. I was so lost and upset when I first got sick. I was treated for migraines, depression and even had one neuro tell me I was sexually frustrated. I actually laughed and walked out the door immediately. Filed a complaint with the state.It took me losing my sight for someone to realize it was not just a hysterical female. Good luck to you.
    acesan8s 1 Replies Flag this Response
  • I was first diagnosed with PTC when I was around 15 -16 years old. I was having debilitating headaches. I first went to the ophthalmologist whose first reaction was that I had a brain tumor. In the 80's there were only CT Scans no MRI/MRV's. I went through several spinal taps and many medications, including steroids, diuretics, etc. After some time the pressure readings from the lumbar punctures/spinal taps went back to normal and my headaches ceased. Over the years I have had headaches but none as severe as the ones I had as a teenager. This past July, some 20+ years later, I woke up and had lost partial vision in my right eye. After 3 days I went to the eye doctor thinking I had an eye infection, not once thinking about the PTC from years ago. As soon as he said "we have a significant problem with your optic nerve" I immediately thought of the pseudo tumor. Here we are almost two months, two mri's, two spinal taps later and I just got into the Neuro-ophthalmologist yesterday who confirmed that the PTC is back or has been for some time, possibly never even going away just not painfully noticeable all this time. I was prescribed Diamox and Lasik to begin with. The side affects were very hard. Extreme fatigue and numbness and tingling in my extremities. I have since been taken off of those because my neurologist said my pressure was not high enough on my last tap. He then called in a prescription for prednisone. (which is not recommended for pseudo tumor) My ophthamologist said to hold off on the prednisone until seeing the neuro-ophthamologist. The neuro-opthamologist yesterday prescribed topamox. I will begin taking that tomorrow. I am not too excited about the side effects associated with that med but I also am willing to try it if it can help restore my vision.
    Anonymous 42789 Replies
    • September 11, 2008
    • 09:36 PM
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  • I take topamax. My doctor just uped my dose from 100mg to 300mg. Ive been at 200mg for almost a month so I go up to 300 on sunday. There are alot of S/E with the topamax. I remember when I first started taking it, I sat here and was literally afraid to take it b/c of the S/E, but honestly, the only 2 side effects I get are weight loss big time, and numbness and tingling in my hands, fingers, arms and face. But I only get that one every now and again. On the 100mg I didnt notice much of a weight loss, at 200mg I noticed a weight loss I'm afraid of hat 300mg is gonna do. Guess we'll find out! I cant believe people take 1500mg of this stuff! WOW!!
    Amanda M. 3 Replies
    • September 12, 2008
    • 01:37 AM
    • 0
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  • CM1 PSEUDOTUMOR CEREBRI SYNDROM. CM1- chiari I malformation. If anyones ever heard of this, please reply, I have been from doctor to doctor (Neurologist and neurosurgeons) for the past 2 years and no one will treat me. WHY? Because no ones ever heard of it! They dont kjnow how to treat me. And the doctors that have heard of it, are all pediatric doctors. i AM LITERALLY SUFFERING! If anyone knows anything about chiari malformations and or CM 1 PTC, please reply! -AHello, I think I can give you some information on what is going on with you. I am in the process of being diagnoised with psuedotumor crebri myself.. It started severely 6 months ago, but believe it has been going on for a few years. Though some of my symtoms have layin dormant untill latley. About five years ago I was diagnoised with anxiety. My symptoms did not add up to the diagnoises though. Had very bad problems with balance, dizziness, distances,and verigo (worse when I was camping in the mountains,driving, walking, talking). I remember thinking I'm not having anxiety it alwayes started with a physical symptom first.Six month ago I started having these huge uncontrollable headaches. Along with previous problems. It became very hard to function. Went to see doc mike and he did an eye exam. Told me that I needed to see a Optomitrist . They told me that my left eye had some vision issues. Then they checked my optical nerves. They were both surprised by the damage found.. In both eyes my optical nerves were bulging. They sent me to a opthamologist. Where I was symptomaticly thought to have pseudotumor cerbri. So.. doc Mike sent me to a leading nouerologist in this field. He has since giving me a MRI of brain, Lp(spinal tap). LP measurement was elevated but waiting for my appoinment with him for finalization. Had MS panel done also. The treament s for this are.. most common Diamox its a diretic that will help bring down the cpf surrounding the brain. spinal taps( which freaking hurt like ***l 2 hours worth of it) can't imagine using this procedure as a treatment. Or the famous shunt. this one would be a permenent one. But from what I have studied the most successfull. I have not gottin any great news. but if I hear of anything or know more about my own diagnois I will let you know.Amanda
    Anonymous 42789 Replies
    • August 20, 2009
    • 03:51 AM
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