Arnold Chiari Malformation 1: 16 yrs P.O progessed rapidly

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Hi my name is Kyla I am 33 years old single mother of 1 boy 9 yrs old. I was treated for epilepsy since I was 14 months old and dianosed with CM 1 when I was 17 years old. I had my 1st surgery Sept. 14, 2001 and than experienced a spinal fluid leak. In had a 22nd opinion and went to Loyola University Hospital for my 22nd CM repair surgery on Dec. 28th 2001. I felt great for about 9 years aside from headaches every so often but nothing major. As of 2010 everything came back, migraines, back ackes between shoulder blades and my lower back, tingling and numbness in both hands and feet to where is lose feeling in my body and fall to the floor in excruciating pain. I now have scoliosis and my migraines are multiple times daily, back pains so bad the pain shoots down my legs even shoot up my side to my left or right side of my neck. Dizziness and nausea continuously, ringing in my beard and vision has become blurry like a glossy film over them at times. Days where I can hardly get out of bed without my son's help, I also have Torticollis now and just found out the Chiari has moved down to C7 and still NOTHING WAS DONE the DR's blame it on my CM. I also have a positive hemocromotosis yet my I have to go in for iron infusions every few months cuz my iron is ridiculously low. I just had an MRI on my back FINALLY after all these years and I found out I have SEVERE LUMBAR DDD (Deteriorating Disc Disease) I have yet to see the spine specialist and surgeon but my sister had the same surgery I did and she only had 1 surgery and is perfectly fine aside from migraines. I'm scared n lost and don't know what to expect. Does anyone else have anything like this?

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    I had my first surgery when I was 4 in 94 and had to have it done again a couple months later too because of spinal fluid leak. They hadn't done the patching and stuff right. Just found out now that in an MRI from 2013 they noted that I have CM 1 11mm and in the notes said to see a dr for decompression. Of course no one told me and found out when I looked at the record. 

    I've been seeing pain management for over a year for nerve damage all along my spine, disk deterioration, fascet disk syndrome (I think that's what it's called), I get pins and needles all down my left arm and am also getting muscle weakness down it and starting down my right side. Also get bad pins and needles in my feet. Get awful pain down my legs. I've been getting my nerves burned for a year but it barely helps. My neck paid is so bad I can barely help and the pain between my shoulders is so help and the nerve burn in that area did nothing. 

    I have severe memory loss, I've been on migraine meds for a few years, and my seizures came back in 2005 during my stroke. They had gone away during my first decompression. I also have a 1 year old and 3 year old and don't see a dr for the CM till January 9th. 

    Once I saw that they found that in the report it all made sense but I didn't know it could come back. So you're not alone! It's scary, especially now that I have kids. I've been so miserable that I'm in pain everyday and can barely play with my kids but feel that if I can get surgery maybe my quality of life will come back even though recovery will suck. 

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      Wow u sound just like me. I've already fell down the stairs a few times from legs giving out on me. I seen a neurologist here which "here" sucks aka Rockford IL, which is why I usually go to Chicago but can't afford the commute since I'm unable to work anymore the dr's refuse to release me back. The Neuro here refuses to to a 323rd surgery since I've already had 2 CM surgeries he just keeps giving me meds for migraines but with all he beds I was on I gained 78 lbs cu of lack of mobility due to pain and the side effects of the meds so I have stopped every med all with the exception of my Norco 10 mg taken 2 every 4-6 hrs for pain, my depression and anxiety meds at bedtime. I take adderall just to have some sort of alertness to function just to care for my son or I'll sleep all day. Nothing helps with migraines can't lay on my back or stomach only my sides. And can only use certain pillows. I have yet to see the spine specialist and surgeon to figure out what to do about the lumbar DDD. BTW what is burning nerves? That sounds s art and hurtful.

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      So sorry! That sounds rough. Well the nerve burning is technically radio frequency ablation. First they give me shots in my nerves to make sure it hits the right spot and if it gives me temporary relief in the spinal area then they go in with little tubes and burn the nerves in the area. I've gotten my

      Low low back down, my upper lower back, middle back, between my shoulders, and am getting my next done in a week. Now from the bottom is wearing off even though it's supposed to last at least 6 months more minimum towards a year and it was about four months. So I'll be doing eh lower back beginning of January again.  Hopefully if I can fix CM it can help more with this. 

      I hear you with zero energy. I hope you can get your back fixed. Maybe try going to a pain specialist. It can be your nerves. Just a suggestion before going to surgery. I went to many doctors before that even tried that because I was too young they didn't wanna try or look for anything. 

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    • Posted

      I've been on 20 mg of Norco every 4-6 hrs for pain and ibuprofen 600-800 mg n Gabapentin 900 mg daily but that has caused rapid weight gain

      .... 76 lbs since Sept 2017 to now. Tylenol in between. I hope we both get hater soon.

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    Hello, I have not received any type of surgery yet!, but was told mine is pretty serious, my entire life i had issues with headaches so bad i would vomit only making them worse, couldn't stand light at all, n whispers hurt, passing out, getting dizzy, eye problems, pain, i was told i have DDD since i was 17 and scoliosis since i was little, i have 4 children and every pregnancy i had problems, i got a PE (pulmonary Embolism) while pregnant with my daughter in my lung, fainting, dizzy when getting up, pain i was always told was legiments stretching, Pins and needles in my back, legs, arms, fingers, toes, forgetting things, my fiance gets mad, saying "i was there so i should remember" but i really don't😟...sorry that my story/reply is not in paragraph form, my phone doesn't allow it, i have tried, been getting critized about that as well...Anyways, things are worse, my memory the pain, i have had this headache for years, kept being told it was stress, kept doing unnecessary test's, the pain is soooooo bad! But when i do get it tolerable, i feel like something is squeezing the back of my neck into the lower part of my head, eyes always have pain, or feels like i have a slimey coat over my eye, blurring my vision, legs giving out, i have fell don my stairs a few times, trip or stumble everywhere i walk, nauseous all the time, lost a lot of weight since June, my finace had to do everything, cuz it hurts to even stand up 😟....My children have told me how they miss me, how they miss me playing and horsing around, decorating, doing things, baking, cooking, going to the park, and i burst down crying, cuz i miss them things too, i miss seeing them happy....Also i get very hot /sweating all the time, everyone will be freezing and i will be sweating, staring into space, feel like nothing around me is real, hate even leaving the apt anymore...Don't have much support and feel really alone!!!

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    • Posted

      Heather78809 haha we chiari patients dont like to be critized...but i dont criticize you..i am just telling it would be better..but if your phone doesnt allow it is not a big deal..i have read your stories..do you have a syrinx? Did they took a cine mri ?
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      They only did CT scan and referred me to a neurologist which i see on the 22nt, so not sure if i have a syrinx or not yet, all the ER doctor told my fiance and i, was they called him right away and said that's what they seen, and that's definitely what is causing me my synptoms and to see a neurologist right away, i said "Well what is Chiari" the doctor's response was "Go home and google is" when i was little i was told i had scollios, then was told i had DDD, i have got nerve blockage done, did nothing, growing up i would pass out, gotten badly injured by it and my mother always said "i was a drama queen" or "your just looking for attention" my family doctor would NEVER do the correct testing, she isn't for a lot of radiology, she always just did x-rays, ultrasounds,blood work and i always told her about my head, dizziness, pin, and most of all my memory, but it was always a run around, she did give me Gabapentin for pain, it does sooth the pain a little to focus for about 2 hrs, but the pain is NEVER fully gone, i am miserable and i hate feeling this way, especially for the holiday's, this is usually my favorite time of year😟

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    HelIo, I am a 30 yr old female with 4 children, 13,11,9 and 4, I was told i had scollios since i was little, when i was 18 i was told i have DDD, my entire life i had issues with migraines, dizziness, passing out, nausea, tingling, vision problems, and as you explained feeling like a glossy film, forgetting things, always had trouble learning, like nothing sticks, trouble getting dressed, hurts to shower and i used to love showers, i would should 2-3 times a day, can't get outta bed without help, legs giving out, have falling down the stairs. I have had the nerve blockage done in 2008 and it did nothing for me, they wanted me to do it again but i refused, my insurance didn't cover anesthesia so i was lightly sedated, but felt everything, for absolutely NO relief, and i couldn't walk or move hardly for 4 days after. This past year has been really bad, went to the ER many times, and i am not one for hospital's, 2 days staight i couldn't eat, cuz the pain was outta control, i was nauseous and the smell of food made me vomit, dissy, every little move,sound,touch hurt, so my fiancé talked me into going, they did a CT and immediately came in and said i needed to see a specialist right away that i had something called Chiri malformation didn't explain anything, told me to go home and google it, so that is what i did, reading a lot of these stories made sense, made me realize i am not crazy, and i am not alone, but i am still terrified, i am sick of being miserable, can't even play with my children 😟 forgetting very important things, can't even dress myself or get outta bed 😟. I see the specialist on the 22nt, but i am certain something is wrong, the ER doctor said he is 100% , growing up i didn't have a very good mother, every tim something was wrong she would call me a "drama queen" or i was "seeking attention" once i passed out hit the corner of a shelf and gashed my eye open, she just had her bf put me in bed, that's not the only incident, too many to mention, but i feel like i wouldn't be dealing with this if she and the doctor's took me seriously, i constantly feel like someone is squeezn the bck of my head and neck, random electric shocks that feel like someone is stabbing me every 10-15 mins, sorry for rabbling, my fiance isn't very good support and when i even try talking to him, he screams and yells, so i kinda don't even try to talk to him much, which that causes a fight too and i don't have the energy for that anymore, i am just scared, terrified, and depressed, and looking for conversation.

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