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1476649 tn?1287202476

CAN ARNOLD CHIARI COME BACK AFTER SURGERY???

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....
52 Responses
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999891 tn?1407276076
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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620923 tn?1452915648
COMMUNITY LEADER

  OOOOOOOOOOOOh.....

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.

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Avatar universal
Forgot to ask. Do you know what the normal course of treatment is if another syrnix does form after surgery
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Avatar universal
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
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620923 tn?1452915648
COMMUNITY LEADER

  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,.....

Keep us posted on what you find out <3
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Avatar universal
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.
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Avatar universal
Hi welcome here.sorry for your troubles.

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.

Best of luck.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  It is possible that you may need to be decompressed again....sometimes the first surgery does not remove enuff bone and an obstruction reoccurs or scar tissue forms and creates an obstruction......

There are also other possible issues...like ICP or POTS....

Do you know if your Dura was opened for the first surgery and a dura patch placed?...If so, what type of patch was used?

When was your last MRI to see if your first syrinx did in fact shrink?

Some times even with decompression, they may not shrink and may continue to grow larger...and without it being monitored there is no way to know.....

Dig up info from surgery, requesting your OR report if necessary.....
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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Thanks for sharing your thoughts and part of your Chiari journey with us...but I am confused...you said your brain dropped ...was this post op?

If so, do you mean you have brain slump also known as cerebral ptosis?

This can be corrected with surgery.,..this happens when too much bone is removed during decompression surgery...and can cause an obstruction to CSF flow and compress the brain stem....

  I pray I misunderstood what you are saying...and that was b4 surgery.
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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Yes as the above poster mentioned if u have Chiari u should not have an adjustment of the cervical spine....

When u were DX'd did they rule out ALL related conditions?

It is hard enuff to find a well informed and experienced NS with Chiari...but I am sure the Chiropractors feel they "know" what is best, but just as most Drs will not admit what they do not know.

As for those requiring a 2nd surgery...yes it happens ...we have had a few that had more then 2 surgeries....

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7595610 tn?1397467772
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.
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Avatar universal
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
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620923 tn?1452915648
COMMUNITY LEADER

  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/
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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  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.
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Avatar universal
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.
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620923 tn?1452915648
COMMUNITY LEADER

  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?
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Avatar universal
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.......
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

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....
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Avatar universal
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?
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620923 tn?1452915648
COMMUNITY LEADER

  I am glad u found us too, but sorry u had to search us out,....once u have this, u do not wish it on neone else.......

DO u have a Chiari specialist?

What testing have u had so far?

Know u r not alone <3
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Avatar universal
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.
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