HI, I was diagnosed and treated for epilepsy when i was 14 months old all the way to the age of 17 which at that time i was diagnosed with ARNOLD CHIARI MALFORMATION. and I had my 1st surgery sept. 2001 in my home town and the doctor screwed up and i ended up back in the hospital for 1 1/2 weeks during halloween 2001 with a spinal fluid leak, and so i went to loyola university in chicago to have my 2nd surgery and that surgeon did an amazing job i was in hospital for 1 week and never had any problems after that..... however now 9 years and a child later im having alot of problems... i am getn blurred vision again, my legs are weak and give out on me more often again, Im getn migraine again in the back of my neck that makes me not able to lay on my back.... the migraines make me nautious, and miserable again and i havent been able to turn my head to the left without pain and stiffness for the last 3 months. i am Trying to get in to see a neurologist but its hard finding a doctor around here that accept my insurence and even harder finding a doctor that is familiar with ARNOLD CHIARI.
P.S is it normal for the back of your head to be numb and tingly after an arnold chiari surgery???? cuz the back of my head is super numb and tingly... sumtimes it feels like a bug crawld across the back of my head it feels really creepy
So my question is CAN ARNOLD CHIARI come back?
plz if nebody knows and has advise plz reply....
You were never cured of chiari. You've always had it. The surgery was a means of treatment to delay progression. Yes, symptoms can and often will come back as you age or if you've had any kind of trauma to your head or neck. Chiari is a progressive condition, meaning it usually gets worse over time.
You are going to have a terribly hard time finding a Neurologist that knows much about it. You need a chiari expert, especially since this is a return of symptoms. There's a list of preferred drs at this site, also at the World Arnold Chiari Malformation Association website.
The best thing you can do now, besides getting a real chiari dr is to educate yourself on your condition.
hi kyky and welcome to our family! i'm sorry to hear you're having problems after so long! surgery for cm does not make it go away. there is no cure for acm. the surgery is only to help stop the progression of the symptoms. it is not uncommon, however, especially after a tramatic event such as childbirth or an accident to have symptoms reappear. you need to find a chiari specialist to talk to/see, but in the mean time, see if you can get your pcp or local nl to order an mri of your brain/ spine. did you also have a syrinx by chance? it could be that the pressure of bearing down during child birth is what is causing your current symptoms. perhaps it jarred something loose or somehow caused your herniation to drop again? the tingling/numbness is caused by nerve compression/damage and/or you could have a csf blockage. it's something you should really have checked. what area do you live in? we have a list of chiari specialist here on the forum that our members have used and liked. of course, you should always do your own research on any dr. you choose, but it's a good place to start. hope this helps a little and good luck. some of the other members may have better suggestions for you later on in the day.
thank u so much for ur advise.... i live in the rockford, illinois. i had my 1st surgery here and the 2nd one in chicago. im having a hard time finding a doctor that will accept my insurence which is kinda dampering my spirit. my aunt and my older sister and my uncle had arnold chiari too, and theyre still doing gr8. idk if i have a syrinx, but i will def have to check out the list of docs u guys have on here...
again thank u so much
I had surgery about 7 years ago and a year later I ended up with a spinal leak and now 2 kids later I have my migraines back blurred vision at least 3 times a day and a numbness in my spine. Does that mean my acm has come back?
From what I'm told, once you have had Chiari you will always have to keep an eye on it. Different things can happen, like cervical changes for instance, that could reactivate the symptoms. You have to remember that they did the surgery to make room around your tonsils but they didn't actually put your brain back where it's supposed to be. So, I think we are all definitely at risk for a re-occurrence and need to be vigilant. Anytime I feel something is not right I have gone back to my NS and had a MRI to check, lucky for me, things have been alright. My NS told me that is what I should do again if anything causes concern in the future.
Another thing to note is that life changes can make a big difference in symptom re-occurrence. From trying to push to exercise too hard after surgery, I had MANY of my symptoms re-develop. I finally laid off and it took awhile (like 6 months!) but things have leveled out. The fact that you had two children could have something to do with this.
I would definitely get checked out by your NS, if everything comes up ok, then you may need to make some lifestyle changes..
The others have given great advice. I had surgery in '91 at 19 and it took 19 years, 2 children (both healthty 8+ lb babies), and a car accident before I found an other decompression to be my only option in '08.
Finding a nuero that knows CM well can be a pain (literaly and figuratively); however, ime it's worth it. A lot of docs will work with you on a sliding fee if they don't take your ins - even use immaging/ other docs that can bill to your ins. There's also out of network referrals based on the fact there are no docs that specialize in your condition in network, but I'm sure you already know this.
Fwiw, I have numbness for the first time after my '08 decompression - right along my incision site. It's nerve damage, I'm pretty certain, as nothing else has developed over time. You may have a different issue, I just thought I'd share.
I hope you find a CM doc and the relief you deserve.
I have or had ACM, I also had the surgery about 9 years ago. and now, especially over the last few months I have noticed ALL of the symptoms have returned and even worse than last time. does this mean it has either moved, grew or came back? I didn't think it could. Because they never said anything about check ups etc...
My symptoms include: blurred vision, dizziness, headaches, migranes, down the right side of the back of my head. hands and feet go numb up to my elbows. fatigue, focus block, horrid sore throat, swollen tonsils,
so, IF it can come back how is that possible,? does it just keep growning and after a while you are back where you started and have to have another surgery? (almost like a cancer)
Mine the first time was pretty big and it was not an option as to wheather it should come out or not. they said it was that or die. I took the first option:-) Hope you can help.
we live in idaho and they don't have much for drs who know much about it.
I am trying to determine how restrictive I need to be on my 8 year old. Does anyone with chiari have any experience with boating. We are avid boaters. My son loves to tube, but I'm afraid that the vibration of the water from the boats prop would cause his chiari to get worse. We would be no means take him over waves, but instead give him a nice smooth ride. Any thoughts on the effect that vibration might have on his chiari...such as the turbulent white water behind a boat.
I don't want to take everything away from him, but I don't want to take a chance on his symptoms returning. He has already had the decompression surgery and duraplasty.
I would avoid the tubing....it is much too bumpy for this condition.....the issue is u do not know if the tube flips over he could get hit in the head....I would just avoid it to be safe...either way....
Im sorry to hear of your problems but I'm pleased to read someone else is in a similar situation to me (don't mean that to sound horrid!) I'm a few years post op and my symptoms recur regularly. I'm on my second neurologist and despite me telling them the symptoms are identical they are insisting nothing is wrong. It's really frustrating and being made to feel like a liar is not nice at all. I hope you have more luck soon. Xx
I had my surgery in 2001 and I just started having new symptoms of nasuea, chronic fatigue, head and neck pain where my head and neck connects as well as pain in my limbs. I'm not sure if this is the chiari symptoms coming back worse or nerve damage from the syrinx.
To get better replies u may want to start a new thread as this is older and not too many look at the older threads.
Once u start a new thread u can continue to ask questions on that same thread so all the info u supply is in one place making it easier for us to answer u.
Surgery may temporarily stop the tinnitus, but it can come back as nething we take from NSAIDS to pain meds can also be a cause of it...I know it is not a nice symptom to have as I also have it and I had surgery...and it did seem to go away, but I have related issues I am on meds for and I still have it...most symptoms r not as bad as they were pre op...so surgery can help minimize the effects....
I saw ur Drs said ur Chiari was mild....that term out rages me as they use the length of ur herniation to determine the name...not how it is affecting u or ur health...ugh...Did they rule out related conditions and see if u have a CSF obstruction? That determines mild, etc....not the length.
Know u r not alone and came to a great place for support : )
I am 16 years old and I had my chiari surgery about a year ago. All of my symptoms have come back and I am just really nervous. My head is beginning to not only hurt in the bottom back of my head (like before) but it is also hurting around the scar. I'm scheduled to go to the NS a week from today. I just don't know what I need to be prepared for. I really am extremely nervous. I have grown over an inch this year in height. Does that mean my bone could have grown back too? I had a post op MRI a few months after my surgery and I got the all clear. Haven't had one in a while. What does all this mean? Is it possible I might need the Surgery again?
Symptoms: Headaches, numbness and tingling/weakness in arms and legs, blurred vision, abnormal breathing.
I was checked for all of the other related conditions before my surgery such as syrinx and others. It is the same NS that did my surgery, so we will see how that goes. What would some of the underlying causes be? I just want to be ready for anything he might throw at me.
Well cerebral ptosis...this can occur if too much bone was removed, it is also known as brain slump.
Intercranial hypertension can also develop post op, and for no apparent reason...a LP must be done to determine this.
Cerviocranial instability- this is something that can be more obvious post op....most with this have Ehlers-Danlos and the laminecktomy can weaken the top vertabra and cause it to be more unstable...
Pseudomeningocele this is a leak and collection of CSF...this can occur if the patch fails, or u reject the patch.
So knowing if u have tethered cord, ehlers-danlos b4 surgery is helpful...and many times Drs only look to the cervical spine for a syrinx, it is possible for them to form in the thoracic and lumbar spine.
Hi i am diagnosed with Arnold Chiari Malformation type 1/2 about a week ago. My surgery is scheduled for the 1 July. I am very nervous. Can you tell me what to expect after the surgery? How long will it take to recover and doing my normal routine?
I Had Surger For CM1 (7 Mm Herniated) In August 2005. In April 2006 I Was Hit From Behind At A Red Light And Bumped My Head Pretty Hard In The Top Of My Car. I Sustained Whiplash, Through 6 Months Of Physical Therapy, And Became Disabled Later That Year I Got On Ssd. I Continued To Try Working Part Time, And Did So For About 4 Years.......Recently, I Was In A Head On Collision Where My Airbag Deployed And I Hi The Back Of My Neck On My Head Rest, This Has Made My Life A Living Nightmare. I Sustained Whiplash, Concussion Syndrome, Loss Of The Normal Curve Of My Neck, And Have Had Constant Headaches, Nausea, Dizziness, And Terrible Neck Pain I The Are That Surgery Was Done. I Am Truly Miserable And Afraid. I Am Having Concentration And Memory Difficulties And Have Not Been Able To Work.The Wreck Wa On 3/29 And I Have Only Been Able To Work For Barely A Month SincIe. After Reading This Blog I Guess It's Safe To Say My Symptoms Of Cm Are Worsened Now. My Question Is Whether I Should Continue To AlloW Chiropractic Spinal Stretching Or Not. I Need Help, Had Serious Neck Pain After The Adjustment Made Last Week, And Now I'm Afraid.(Side Note) Does Anyone Notice That, Rain And Cold Air Make Symptoms Worse?
I had surgery last July which was a decompression, the surgeon says everything went to plan, if this is so why am I still getting symtoms and in so much pain the pressure in my head is awful, I have since been referred back to the neurologist who said to me that chiari is now cured is he living on another planet? N have been given so many tablets to help with the pain and none work, it's driving me mad my youngest child has EDS too so makes it harder for me to find a doctor who understands my condition as all my time is taken up looking after her. If anyone knows of any nhs doctors who specialise in chiari could you please let me know as I don't know what else to do.
Hello Selam, THANK YOU SOOO MUCH. I was getting so frustrated cause no one can understand unless they experience for self. I can go back as far as middle school with the headaches and the dizziness. When I laugh, or scream from excitmenet or cheering s team on; when i yawn and when i get up suddently. I'm begining to studder and have a lost for words. I was just diagnosed on June 4, 2013 but had been having all the systems for years. Just within the last three years they have gotten worse. The pains in the legs when trying to sleep, keeps me tossing an turning and when the pressure in my head build its like you swimming and trying to get from the bottom of the pool to the top.....i hear whossing, my heart beat get very nauseas, i lose hearing and sight then it all calms down and comes back to normal. Pretty scary at times. People think you are crazy when you try and explain. I now tell folks the name and let them research so they can get a better understanding. I'm so glad I found you all.
Hi. I cant believe theres a forum for chiari malformation, awesome. I have type 2 and had surgery back in April 2007. Surgery went well and i went back to everyday life. Still experience bad headaches but been told thats normal. Last November i walked into a shop and went to speak to the lady. I slurred and couldnt get anything out right. Confusing my words, but i knew what i wanted to say, it was just not coming out. At the time i thought nothing of it. However lately i have been getting headaches daily, tingling in my hands and feet, sometimes i feel my legs are going to give way. I have been feeling sick on and off for months. Sometimes dizziness. Today however my vision blurred for bout 45mins, then when that returned i got a headache and my forehead feels heavy. What should i do go to hospital or wait for appt to see the neurosurgeon?
Since u have an increase of symptoms u may want to go to the ER at the hospital to make sure nothing else is going on...not sure how long a wait u have to get in to see the NS.....if it is like nething here, I would advise u go when u r having an issue to the ER u never know a NS may be on duty and see u.....
May I ask what all they did for u in ur surgery as there are a few diff types of decompression for Chiari that is done....
Yes of course, I had a decompression. Easy way to i know is they opened my spinal cord up a little to allow the fluid to flow. I also had a cyst growing in my spine, after the operation that went down.
All i was experiencing was really bad headaches, i was four months pregnant and was at my local gp everyday for two weeks. I would go in there and explain that my head was splitting at the back, but being on a motor bike would ease the pain. She must have thought i was exaggerating because she couldn't find anything wrong. I remember her telling me it was in my head.
Anyway one night i went to pick something up, but i dropped it and became motionless for about a minute. Thats when i went no, something is wrong. I took myself down to the hospital, which an MRI scan was done, and the condition was diagnosed. Being four months pregnant alot of check ups were done, the operation had to be done with me on my side due to my stomach.
Since the operation i find myself unable to make really important decisions, i must rely on others to help.
I am scared that again the same has happened, due to all these increased symptoms, but then again what if they say im stuck like this for the rest of my life and will they get worse??
I have a gp apt tonight, so I am hoping the doctor will give me some advice. It is hard finding a dr that is aware of this condition. When i had my operation my surgeon was also a teacher and i remember nearly everyday he would bring his students in to access me, he told his student that maybe only one of them would come across this in their medical career. Im glad i found this forum but also saddened by how many people are suffering like myself.......
I understand u had a decompression but do u know which type? There are a few..did they do a lamenectomy, a dura plasty?....
U had a syrinx and u said it did shrink...have u had it looked at to see if it grew?...they can grow back if u have another CSF obstrution which can be caused by scar tissue or if not enuff room was made by the first surgery....
How long after u had the baby did they do ur surgery?
i had the surgery when i was four months pregnant, after going to the er they would not release me until the surgery was done. I had a Foramen magnum decompression. It was noted that the downward herination of the cerebellar tonsil. Displacement was 8mm below the foramen magnum.
The syrinx was extending from C3/4 down to T4/5 level. They said that the orbits ethmoids sinuses and maxillary sinuses were unremarkable and that minimal fluid retention was seen within the left mastoid air cell. I have no idea what that means. It is on my report from hospital.
i had another MRI scan after my operation and one a few weeks later then again at 6months after.
I went to my local gp today, he rang my neurosurgeon personally, an MRI has been booked but will be 6-8weeks. But they have arranged for a CT scan for either later in the week or early next week. They want to rule out hydrocephalus.
WOW that is a first, I never heard of them doing this surgery on someone that was pregnant....may I ask did u then have a C-section?
ICP (hydrocephalus) can develop post op and this is y I asked about a dura plasty and what type patch was used, I am a strong believer that those with EDS DX'd or unDx'd may develop ICP with a foreign matter dura patch...as I have seen this happen so many times...
I feel the excess CSF is the body rejecting the patch that was used,...
Good luck with the next MRI and do keep us posted....I pray it is not ICP.
No i didn't have a c-section. But due to my history i wasn't allowed to push because of the pressure. That was difficult.
Im having a CT scan soon.
I was unaware of that information, definately hope its not.
I have four children, my little girl who is 5, gets headaches at the back of her head. Reading some posts and due to my history should i get her checked, or even all my kids? I would hate for them to go through what i am. Or anyone for that matter.
If ur DD is having HA's and it is affecting her ability to have fun and function like little ones should then I would have her checked...but she is so young and it is hard with all the testing to get them to understand...and not to get scare from it all....so unless it is a issue such as daily, vomiting with the HA's or she can not sleep...etc...then I would wait...
Most Chiari Drs do suggest we have a C-section so we do not have to push, but for those of us that were not DX'd we went thru natural child birth....so, not sure how it affects us....other then adding to the HA's/
Hello! I was diagnosed with chiari when i was sixteen underwent decompression surgery including the dura. I have been pain free for 9 years. I recently started working at a chiropractic office and he has all of his employees do an exam and do treatment through manual adjustments. Its been about four months I've been getting adjusted and about 6 weeks ago I noticed I would get a slight headache after a cervical adjustment. I should have listened to my body but trusted the doctor. This past week my all my former symptoms have come back. I feel muscle weakness, lightheaded, I'm horse a lot which is odd, I have a lot of pressure behind my eyes and off course the feeling of your neck up to your heard is about to burst. I am having an MRI done this week to check. I honestly didn't know that it could re occur. Has anyone else had a run in with chiropractic "care". Also, when severe symptoms re occur is it common to under go surgery again? It is so nice to be able to talk to others who know what I'm going through
Yes, get the MRI and don't let the chiropractor touch you again. For any reason.
When I was first diagnosed, I asked my Neurologist about cranial-sacral therapy and he OK'ed it. I then found a practitioner that I (thought I) trusted and my symptoms (which were already bad enough to warrant surgery-I was just REALLY reluctant to go that route) got dramatically worse. Before her "treatment" I was having mild to mediocre pain and visual disturbances and impaired balance. After, I was in excruciating pain and was blacking out for significant portions of the day, plus having vivid hallucinations and waking terrors. I teach at a University and I recall clearly watching the letters of our agenda walk off the page while at a meeting. Good times.
After several trips to the ER and another to my Neuro, I realized my Neurologist was and idiot and found another one who was "stunned" (his word) that I'd been encouraged to go to a chiropractor. She could have killed or paralyzed me.
I ended up having surgery almost immediately after that.
I am surprise a chiropractor would agree to do anything to you. Once I mentioned I had arnold chiari malformation my chiropractor would not even take me as a patient. My surgery was Oct 2003 and my brain dropped 20mg. Yes I still have some symptoms still but I had the best surgeon Dr. McGrail from Georgetown Medical Hospital, Washington DC. I am limited on what I can do and sometimes I am afraid to do some things. But I would be talking to my Neurosurgeon about going to a Chiropractor. I hope my feeling helped alittle.
Hi. I was diagnosed with Arnold chiaria in 2011. I had decompression surgery to relieve the pressure. There was a syrinx . I don't remember exactly the extent. I never had the normal symptoms. What prompted the MRI that discovered the chiari was I was having pain in my left arm and hand only. The surgery was a success but the pain in my arm didn't go away because the nerve damage was already done. I have been on pain meds since. Last year I started having pain in my right arm. Had an MRI last week and today my neurologist confirmed that a syrinx had formed again. This time from c2 to t4. Larger than the first one. I see the surgeon next week. My question what do they do for this since I have already had the surgery.
I have read in syringomyelia forums that in some cases the syrinx keeps forming again even after decompression surgery
Some of them have had more than one surgeries .There are various theories for this like inadequate decompression etc., however exact reason is not known .
I have read that they have been treated with some sort of shunting procedure.However there might be some problems of shunt failure etc. and hence care should be taken to find a good chiari-syringomyelia specialist..
, the best possible care is given by dr who has treated number of chiari -syringomyelia cases.
This forum is very good especially for the ones with chiari malformation however there are not many replies from sufferers of syringomyelia.
Dear selmaS is the most replier on chiari and related queries giving lot of useful information ..
Though I regularly read this forum I have not come across much replies from syringomyelia sufferers .I might not be right fully and have skipped some.but to my knowledge i have not read much
Hope people would reply.more in future becoz internet information is the main source of information for many patients.,who have so many doubts.
You may try and search on google... syringomyelia forums post your queries there too .Because you are likely to get more information from the people who have faced similar situations like you.
Yes a dura patch was used. And an MRI was done approx two months after surgery and the syrinx was completely gone. My surgeon is one of the few in this area that does this kind of surgery. I did my research on ohm before the surgery and found only positive . I don't know what knd of patch was use. I can't remember. What is ICP and POTS. I'm not familiar with those. I really hope I do not have to have another surgery.
ICP = intercranial hypertension....too much CSF builds up
POTS = Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia. POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing.
So you have not had a MRI since 2 months post op?....Mine was done at 1 yr....but I did not have a syrinx....so a more immediate MRI was not needed at the 2 month point.
How long have you been dealing with a recurrence of symptoms?
have you contacted your NS?
The reason I asked about what type of patch was used as they can fail and cause an increase of CSF....which may be part of your issue with a recurrence of a syrinx to form....
As I mentioned b4, it is not uncommon for a syrinx to grow back or for a new one to form post op....some do not shrink and continue to grow larger....everyone is different....we have had each situation here with members,.....
Did not have an MRI after two months until a week ago. That is when the new syrinx was discovered. I have always had pain in the left arm. Didn't start having pain in the other arm until last year. Because of some insurance change I was not able to see my regular neurologist. I started seeing a pain dr and he didn't to seem to think anything about the new pain. I was recently able to go back to my regular neurologist. We started discussing trying a spinal cord stimulator to help with the pain. That is why he ordered an MRI to check for changes. Thank you for the information. As soon as I see the surgeon I will update
Well they will look to see if it is a CSF obstruction...if it is, and it is one that can be cleared with another decompression then that could be considered.....many times a syrinx is not large enuff to use a stent or shunt to help drain it....but in some cases they are...
Only your Dr will be able to tell you after reviewing your MRI as to what is going on ...why the syrinx formed and the best course of action.
Most CM/SM experts agree that Syringomyelia is a result of a CSF obstruction be it Chiari, a tumor or spinal cord compression. Scar tissue from decompression surgery is one cause of a recurring syrinx. SM shunts have a 10 year life and need to be replaced, there is also a problem of the shunt getting blocked.
I have been on here for a few years, I don't post as often as I would like but I try my best to answer any post that has Syringomyelia as it's topic.. :) I have been to many websites and SM Community's but MedHelp is where I find the best support.
The only site for information I would recommend is the **** website.@****.org. There is a lot of negative information on the web.... There are many Facebook groups but there is so much drama so I stay away....
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