CAN ARNOLD CHIARI COME BACK AFTER SURGERY???

[KYKY84]

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....

[wonderchiari]

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.

[selmaS]

  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.....

[Caccamisi01]

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.

[selmaS]

  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.

[Suzieboots]

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.

[selmaS]

  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....