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stage 1 of chiari malformation does it get worse
type 1 chiari malformation, does it get worse and is it heredity?
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I have had a fairly normal life with some mild headaches but everything changed in march. I suffered a ruptured aneurysm on march 16th and spent over a month in ICU. Since my craniotomy and clipping of aneurysm I've had horrible headaches, weakness, fatigue, memory issues, diziness, seizures, nausea sometimes with vomitting especially around time of seizures, insomnia, loss of feeling, neck pain, back pain, and all over pain really. My neurosurgeon referred me to a headache specialist who put me on the max dosages of pretty much everything and nothing has helped. I'm currently on 7 meds. He did EKGs CTs and finally sent me for an MRI and found out I have chiari malformation 1. I was then referred to another neurologist who also specialized in chiari and he spoke with me went over my mri showed me my herniation and recommended decompression. He was ready to set a date for surgery before i left his office but As soon as I told him I was dropped from Medicaid because my husband got a job he wouldn't touch me. He said I have to have Medicaid or insurance in hand. I cannot even begin to tell you the dozens of people we've contacted for help from hospital charities to voc rehab and etc... We've been fundraising for a while now. I just really don't know what else to do. I am 25 years old. I'm married and have a 4 year old boy and twin 1 year old girls. I just want my life back. I want to be the wife and mother I used to be, not the one who's hurting all the time.  Can you offer me any advice? Thanks in advance.

Lauren
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620923 tn?1452919248

  Hi and welcome to the Chiari forum,

Medicaid should not drop u until u had coverage with ur DH's job....I was not aware they could do that.

Surgery for this condition is not a cure and many continue to have pains and issues even post op...surgery is to restore CSF flow and slow progression.

Do u know if they ruled out other related conditions?....Did a CINE MRI, a thoracic and lumbar MRI?

Related conditions u need to have ruled out is tethered cord,ICP, POTS, sleep apnea and ehlers-danlos.

One thing u may try is the clinical trials....they DX and treat at no or little cost....we do have a link to the trials....use the search this community feature.
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I had Medicaid from march to sept for my aneurysm and they dropped me bec my husband got a job. He only makes $10 an hr and we have a family of 5. I tried reapplying and was denied. They gave me an mri and told me I had chiari and that was it. I haven't been tested for anything else. The secretary for my neurologists ofice called me once she learned my Medicaid was dropped and canceled my future appointments.... Seriously... So now I'm just trying to figure out what to do. I'm a stay at home mom to my 3 kids no job. Just really need some help. Thank you for responding.
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620923 tn?1452919248

  The clinical trials, may be an option for u...it is the NIH in MD and they do trials on those with Chiari, this is not some new surgery it is a way to track it and know what the long range results are.....Dr John Heiss is the Dr in charge there and well known in Chiari circles for knowing a lot  and is well experienced.

Do look up the link using the search this community feature and type in clinical trials.....
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Hi.  I am a very concerned Mom.  My 25 year old son has been having what I call "episodes" of losing consciousness.  He has learned to know when they are coming on and tries to get to a place to sit down. When this happens, his speech becomes slurred and his cognitive skills pretty much shut down.  Afterwards, he is exhausted and sleeps for hours.  He has had CAT scans, MRI's and every type of monitoring test that he can have.  Although the Doctors notice that 'something' is definitely causing these episodes, nobody knows why, or even what they are for sure.  In my quest to find answers for him, I reached out to some family  members. I found out today that one of his cousins was diagnosed with Chiari Malformation. After hearing this, I immediately started researching it and although there are some notable similarities, every single case is so unique that I can't really get a feel that "this is it".  I'm beyond myself with worry and my son lives 2 hours from me.  Does anybody know of, or have symptoms similar to my son?  I'm desperate to help him find answers. God bless, and thanks so much!  Sherri
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620923 tn?1452919248

  HI and welcome to the Chiari forum.

It is important to get copies of ALL testing that has been done, the MRI's and CAT scans on a disk and request copies  of the reports as well....it is possible it shows chiari but far too many Drs consider it an incidental finding and not much more....but it can  and does affect too many of us.

It can also be found in families too...so since he has a family member with it,this should be looked at more closely.

Chiari symptoms do cycle, so episodes where these symptoms u mention occur can be Chiari as we have had a few members with similar issues.

I had what are called Drop attacks....standing one minute, the next mid fall...and can not react or brace myself or call out....Afterward I was very nauseated and all over unwell....

As u mentioned we are all different so u can not base it on me or his cousin, u need to get copies of the testing and have yet another Dr review it for u.
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Chiari type 1 is the only type of Chiari malformation that can be acquired via an automobile accident, head trauma, etc.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

U r quite right, to a degree...u can acquire low lying tonsils which many refer to as Chiari , but it is not a true Chiari Malformation as that is the malformation of the skull and  u can not acquire that...only the herniation.

May I ask do u have Chiari and have u had surgery?
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My 3 year old son has chiari 1 he has synomenlia (dont no how to spell it) and he has a syrinx but i can understand what it all means and he has very low lying cerebel tonsils aswell along with periventriculare flares and developmental delay can somebody please explain what it all means as he has got to have an operation next year thank u
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Syringomyelia is the condition of having a syrinx.....a syrinx is formed when there is an obstruction to CSF flow, surgery is done to restore the flow and hopefully reduce symptoms.

There are related conditions so make sure ALL are ruled out B4 surgery as it can affect how he feels and heals post op.

And make sure he has a true Chiari specialist helping him as that can affect the outcome as well.

We have a prayer thread set up for 2014 surgery dates do include ur DS so we can post a prayer thread for him.
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If anyone can help please reply to this. I have posted previously but I also have new questions. I have chiari 1 malformation, I finally have insurance now and am awaiting a surgery date to have decompression. I have put it off because I know I need to have other tests done before decompression. The only thing they've done is an mri of my brain and shown me the herniation and said with all my symptoms that are getting worse, I need surgery.  I know I need to be tested for things like syringomyelia,  tethered cord, icp, pots, sleep apnea, and eds before decompression. My mother who also has chiari and has had decompression has made an appointment with a specialist to have these tests done. Only problem is that it's in Maryland and I live in NC near greensboro. Does ANYONE know where I can have these tests done in NC? I am trying to avoid going to MD and wasting more time and $. I'm unemployed and have 3 kids under 4 I take care of. If MD trip can be avoided, it would help a lot. My husband works full time and I don't have anyone to really keep them while I got to MD for days. I really need to get these tests done here in NC if that's an option.  Can anyone give any advice. TIA.

Lauren
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620923 tn?1452919248

  Hi Lauren,

There is a Dr in NC...Dr Michael Rosner....u will want a Chiari specialist ...one that agrees these tests need to be done D4 surgery.

U haven't had a CINE MRI yet? Are they basing surgery just on ur symptoms?

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I had an mri of my brain that's it. The dr I see is a chiari specialist. He looked at my mri, the herniation, and talked with me about all my symptoms and was ready to schedule my surgery ASAP. At the time I didn't have insurance, but now I do and he's ready to schedule surgery but I want these tests done first. I was just trying to avoid going all the way to MD.
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620923 tn?1452919248

  May I ask who ur Dr is.....most Chiari Drs should schedule these tests for u....mine did....so I am not familiar with those that do not.

I am concerned that ur Dr has not given u a reason and said ASAP....how long has it been....and how fo u feel now compared to then?
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Dr. Bell. My mother said he specialized in chiari. I called his office and spoke to his MA and she said he's done 100s of decompressions and I brought  up the tests and he's supposed to personally call me himself after hours today. I'm glad because I have a lot of questions for him. He told me at my last visit that there is no magical med or cure for chiari, that the surgery was just something to give you a better quality of life because most say it really helps with their symptoms. He told me during surgery they work on the herniation and something about removing part of my skull to provide more space or something. I saw him 4 months ago. I've gotten worse since then. My mother had her decompression done by him as well. She did not have any of those tests done before her decompression, and she had problems for a while, but she's 11 months post op now and having no more symptoms and his response was "after decompression it usually takes 1 year to feel like yourself again" I just don't want to chance it. I want the other tests done before decompression so I don't have any other issues. His MA told me I have to have everything pre authorized through my insurance and since I already had an MRI of my brain that showed chiari they would deny another because I was simply wanting them to "fish around to see what else might be wrong with me" I know my mom thinks this dr. Is a miracle worker because she's so much better now, but I just want to make sure I get things done the right way. I just had emergency brain surgery in march for a ruptured brain aneurysm and was in ICU for a month. I'm on 7 diff meds right now and nothing's helping. I have horrible headaches for the most part of everyday, weakness, fatigue, memory issues, diziness, seizures, nausea sometimes with vomitting especially around time of seizures, insomnia, loss of feeling, neck pain, back pain, and all over pain really, and my vision is shaky a lot. I'm just getting worse. It's so frustrating. Thanks for responding back. I appreciate it.
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620923 tn?1452919248

  I am not familiar with that name, not sure but  I do not think it is on our list,

Actually it can take up to 2 yrs to heal completely as the nerves take longer to heal then the incision.

Not sure what type INS u have, some will restrict what testing ur Dr can do, but I did not have an issue with mine having all the testing done. Since u have had other issues u would think it is best to rule it all out b4 u have yet another brain surgery.

With the decompression they do remove some bone from C1 and C2 to allow CSF to flow...depending on the condition of ur cerebral tonsils will depend on how they are handled, and it is also different from Dr to Dr.....same thing with opening the dura and placing a dura patch...there are several types and if u have EDS it can be the patch and what they use to close that can cause an issue....the patches are either synthetic, bovine, cadaver or tissue from u, harvested from ur thigh or scalp.

Surgery is done to restore CSF flow and slow progression ....but ur Dr is right there is no cure or med to fix this Chiari is life altering....some do better then others....so ur attitude going in can be a huge help.

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i wias reading your problems and was wondering what you thought of dr.montgomery?? my  daughter had surgery by him and she liked him so we did not look for a second option,do you fill he is a good doctor?i never asked if he was a chiari specialist,is he???how do you find one in Syracuse??hope things are getting better for you and all these other people that have this condition. I havenever even heard of this before my daughter had it found on a mri scan.  let me know what you think,thank you
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

The member u r responding to has not posted in 2 yrs, so is inactive, but u can send a PM (private message) which will generate a e-mail informing her someone is trying to make contact....

  How is ur DD doing post op?

We do have a list of Drs that members have been to, treated by and liked....u can look to see if the Dr u r asking about is on the list.....http://www.medhelp.org/health_pages/list?cid=186
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Hi,
I've had the decompression surgery almost 4 years ago. The past year or so I've noticed my throbbing headaches to be coming back as they were before the surgery... what are the chances it went back to what it was or something else is wrong?
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

It is possible that another CSF obstruction occurred or that something else related could be going on.

Scar tissue ca develop over time at the surgical site creating a new obstruction to CSF flow....

A new MRI would be needed to see what is going on.....

Do u know what all was done during ur surgery....lamenectomy, dura plasty?....Were all related conditions ruled out?

What do u do on a daily basis?...have u had a fall or in a MVA over the last few yrs?
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My 3 year old son who has multiple medical conditions was diagnosed with Chiari 1 with 15mm.... My question is I have been to two Drs and both don't know what to do. My biggest concern is that he is all of a sudden sleeping all the time. They have done every test possible to see what it could be but nobody can figure it out. Has anyone else had this issue??? The last Dr just told us that she would do the surgery but we don't know if that is what is needed..... just wanting to know if anyone else has had this issue?? He has swallowing issues but the 5 surgeries have not helped yet and I am tired of all the head concussions he has from falling all the time. He was born with club feet but are good now. He does do better with no shoes on and is small for his age. I am just at a loss as what to do. Husband and I are fighting because we don't know what to do.... They also think my daughter might have it also so we are waiting on her MRI next month!  His other medical problems are Aarskogg Scott Syndrome, a Laryngeal cleft, Unspecified auto immune disorder, asthma, chronic ear infections and hearing loss and vision issues now also, He has always been delayed in everything and with every med he takes he aspirates or with most thins. He wont eat much food due to choking and has to take supplemental drinks to keep us his calories to grow. I do know all the other Drs say its not there issue with what is going on but the neurosurgeon cant give us a straight answer and said she would do the surgery but left it up to us.... it is a big deal for a 3yr old who has had multiple surgeries already and in the last month has been poked over 30 times for tests and or surgeries and he keeps getting worse. We might have a few good days where he is happy and playing but here the last month or so all he does is sleep. Just wondering about any information that might help us figure this out.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry ur little guy has had so many surgeries and is dealing with so much already in his young life.

Many if us do have sleeping issues....has he been tested for sleep apnea?

U can have a sleep study done in ur home, instead of a clinic....research NovaSom....

I had swallowing issues that did resolve post op .....but with his Aarskog-Scott condition, I would not know how u can tell what is from which...as he has joint laxity and many with Chiari also have it as they also have EDS which is related and causes the same issue....

I would strongly suggest finding a  Chiari specialist to help u decide if surgery is going to help and answer some of ur concerns...as there is so much going on with him....not all Drs are capable to knowing what may  or may not help....and if his Drs are not true Chiari specialists they may not know how to advise u.

A NS is not the only thing to look for when seeking help with Chiari....u want one that treats and researches Chiari and ALL related conditions.

  Chiari symptoms do cycle, so having good and bad days is typical.....

Does he wear a helmet ?   it may help until he gets help with his balance and help with the concussions,.....

With joints that are lax, u can have pain, pain makes u tired....I had periods where all I wanted to do was sleep....plus he is growing....that has got to be tiring for him. But do have a sleep study done too.

we do have a list of Drs for u to use to research....http://www.medhelp.org/health_pages/list?cid=186

This list is not a referral nor an endorsement....just a tool to help u get started researching Drs....having the right one is KEY !
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had to post this, so looked for a current comment chain.  I had the decompression 49 years ago.  lots of adventures since.  recently bought a "Chiari Pillow".  it is great.  for the first time I can remember, I wake up without a headache and without nystagmus.  best of luck and courage to all posters.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Not sure how u looked for a current thread as many find these older ones b4 they join....but no matter....I am glad to hear the Chiari pillow helps u....and 49 yrs ago....may I ask have they done recent MRI's to see if there have been changes?

In all that time u have always had HA's what did ur Drs say in regards to that ?

Do u have ne other lingering symptoms or issues?
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no MRI's then.  I had headaches for several years after surgery.  Learned to slow down and not let them build into anything really bad.  I feel pretty good.  Just know not to expect good outcome when I move my head first thing in the morning.  was surprised how well I felt after sleeping on my new pillow. I know the pain can be tremendous, I read the posts. In my case the pain ultimately became less and less.  It is what my Dr said to expect and it happened.  I have poor balance and can't move very fast, I have a funny voice,  I wish the very best outcome for all who find themselves facing this condition.
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620923 tn?1452919248

  If u don't mind me asking, how did they discover ur condition 49 yrs ago?

Have u ever been tested for related conditions?

Wondering if a related condition could be the root to some of ur current symptoms.

The funny voice could be reflux, or a Chiari related issue....
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Just had ct revealing chiari malformation. Been having pressure from back of scull. Dizziness. Weakness. Gets worse as day goes on. Also have strange sensation like my brain is going to just shut down. Like when the power almost goes off but then comes back on during a thunderstorm. Does anyone else have that? Also feels like i am moving when i am sitting. Have mri scheduled tomorrow morning. Hopefully will get more answers. Have many other problems. Eye twitching ears ringing trouble concentrating nausea and intestinal pain. Anyone else have these?  Oh and knees buckling
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620923 tn?1452919248

  Hi and welcome to the Chiari forum,

  Yes to all of them.....not my knees so much, but my ankles......

The lights going off then back on is just how my NS described the drop attacks I had, when CSF  gets obstructed it is like a switch is turned off then back on...it is so quick you are not aware it happens but with a drop attack you may be mid fall when it comes back on and wonder why you are falling...what you are feeling may be very similar but not a complete shut off so you are feeling it....

I hated the eye twitching, it could go on for days at a time...and the ringing in the ears....I am always asking ...do you hear that....lol...no one else can of course...but there are times it is so loud I think it is from outside my head,....lol..

Know you are not alone....if your MRI does verify Chiari then educate yourself on it and ALL related conditions and research Drs, having the right Dr is key !!
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Thanks. I'm not the only one. Have actually been having symptoms for 1 1/2 years but no one seemed to believe me. Now that it has gotten much worse they are starting to take me seriously. The ears ringing is one of the worst because it never goes away. Just keeps getting louder
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620923 tn?1452919248

I see you figured out how to use the forum a little better and I had the other question deleted.....

It can be very difficult to get Drs to listen so then it can be even harder for family and friends to listed and believe...as it is an invisible condition, they can  not see it, therefore it does not exist....

Where are you from, as I might be able to direct you to some Drs to research for your area....finding the right Dr is key and that does not mean a Dr that has heard of Chiari...but one well informed and experienced.
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thank you Selma for all the definitions.
im taking lots of notes
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Hi.. my question is..... in anyone's experience what have you learned to look for when reading your blood work?
Does anemia go hand in hand with chiari?
Does your immune system respond to chiari?  

I feel that there is something else underlying with my daughter and I don't know where to begin to play detective.
(as I have mentioned-no insurance)

thank you,
Cindy
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620923 tn?1452919248

  Those of us with Chiari are prone to auto immune disorders and connective tissue disorders.,...those can be checked with blood panels....as well as malabsorption of vitamins and minerals....

Which can lead to anemia....and I had been told many times over the yrs this was an issue for me...so I always have B12 on hand....and I try to eat more things with iron as taking iron is too hard on my system as I also have IBS.
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I just had a cervical MRI and one of my spine.  I recently had surgery on my back and neck, and I'm still having pain both places, so he sent me for MRI's.  I also was experiencing numbness in my calves and feet.(Mostly in my left foot.)current  First of all you need to know that I had laser surgery which is minimally invasive. Well, I have a recurrent disc protrusion in my lower back.  In my neck there is a development of a left paracentral disc protrusion at c5-6 contacting and minimally indenting the ventral margin of the cord.  Also what I found very interesting was a minimal cerebellar tonsillar ectopia measuring 2 mm.  I know that's small, but I have read that it doesn't matter how badly herniated they are for the symptoms your having or not having.  I have been having all kinds of symptoms for a very long time.  I was diagnosed with fibromyalgia many years ago and I'm not even sure when I was diagnosed with chronic fatigue syndrome.  I haven't been sure that I really have fibro. for a long time.  To be honest, the more I talk to other people with it the less it sounds like me.  I really thought I had MS.  I had a brain MRI and it show two areas of white matter measuring 3 mm. but my neurologist believes they were caused by my migraines.  I also have a brain aneurysm that I need to get checked every 6 months.  I have no idea what if anything caused that.  But when  I started reading your question and answer forum, WOW!!  This really sounds like me too.  I don't know what to think.  I'm afraid my husband is going to think I'm crazy.  But, the doctors in our area stink!!!!!!!!!  And if I don't do my own research I feel like I will never find out what's wrong with me.  I have also been extremely weak off and on the last four years, but it's getting progressively worse.  These doctors are doing nothing to help me, and I have three children to take care of.  What do all of you think?  I am 44 years old.  I have always taken good care of myself and sometimes I think that works against me, because the doctors take one look at me and think she's not that bad.  I don't know what to do.
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620923 tn?1452919248

  Hi  and welcome  to  the  Chiari  forum,

  I  would  suggest  more  testing....even  tho  your  herniation  is  small, the  issue  is  is  it  creating  a  CSF  obstruction.,..??  Chiari  and MS  have  many  similar  symptoms  and  it  is possible  to  get  a Miss-DX  or  have  both.

  It  is  also  possible to  have  other  related  conditions  to  Chiari  that  can cause  many  of  the symptoms  even  if  the  herniation  is  not  causing  an  obstruction....Syringomyelia, Ehlers-Danlos,  ICP, POTS, sleep  apnea,  and  a  few  others....and  we  get  a  DX  of  chronic fatigue, and  migraines....

We  are prone to auto  immune  and connective  tissue  disorders....

May  I  ask  what  area  you  live  in?
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I had decompression surgery for Arnold Chiara Malformation in 2007 and now am having really bad headaches with nausea and spells of almost passing out.  I had neck surgery on 2 ruptured discs in 2009 and in 2011 a MI showed the disc below those was bulging and there was restricted csf flow.  My neurologist just wants to a CT scan which I had one last week at the ER and nothing showed up.  Will a CT scan show anything?  Frustrated
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

This is an older thread so you may want to post on a more current one or create  a new one.....

Many of us do have continued symptoms and issues post op as surgery is not a cure and so many of us do have related conditions....EDS being a connective tissue disorder could be a cause for your disk issues....

And a disk that is bulging can cause the same disruption to CSF flow and create many of the same symptoms we had prior to decompression....

I am not sure if a CT would show everything....it really depends on the strength of the machine and the slices and or angles they took....

Is this a spine specialist?
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I just read your post. I hope you have reconsidered surgery by thi time. My son had Giari surgery when he was 21 yrs old. His complaint were pain severe in his right arm and neck which was twisting to one side. He was told by a Chiropractor that she would not touch him after Xray was done. Referred him to a Neurologist. This doctor told us that nothing could be done to go live your life. And, although he made very negative remarks about the claims made by Stanford Hospital regarding their ability to fix this condition.....he suggested we try  long to short,
that was 25 years ago! He was the first compression, removingthe back portion of top two vertibrae, opening the foreman and the used a donor dura. There was therefore no shunt required. In one month the cyst in his spinal cord was completely drained! We were soooo happy and relieved.
His life is normal, he still has some residual pain in his arm. He is a very active man living his life!
So please rethink surgery...find university hospitals that have these expertly trained specialists. It seemed that, 25 years ago , neurologists had attitudes on this due to lack of knowledge. I was told that a physcian may come across a giari patient once in his or her entire practice. Good luck and God bless.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

The member you are addressing your questions to has not posted since and has not been an active member. If you would like, you can send a PM (private message) which will generate an e-mail to notify them someone is trying to make contact.

  I am impressed to the fact 25 yrs ago your son was able to 1- get a DX and find a Dr that knew what procedure to do...it is still difficult to know which Drs are remotely  educated on this condition and why this forum is here and why we have a list of Drs for members to use to research them.

So happy for your son that he is doing so well after such a long time.
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Hi! I have been reading a lot of stories of people that have Chiari malformation on here. . So I thought that I would share my story. It started back in July 8 of 2014. I woke up with a very sore knot in my back. It didn't go away I didn't do anything with it for maybe three weeks and finally couldn't take it so I went to a chiropractor where I was told that I had three bulged disks in my C-5 c6 and  C-3. I chiropractored every day for a couple weeks and then I went to three times a week did this for a very long time and nothing worked went to a pain specialist and did the shots and they didn't do anything had pain medicine but didn't take it. Made appointment with a neurosurgeon and they found it right away on my MRI. Had many more MRIs had one with the contrast had a few more appointments with him as these were months apart because he is very very busy because he has a very wide practice but he is a very good surgeon. Told me that I would need to have surgery and I am waiting next Friday I have my decompression surgery. The funny thing is though is that I never had headaches which amazed him.A lot of these symptoms that I see with peoples stories I do not have praise the Lord for that. But the major thing for me has been that I have not been able to sit down in a chair or any kind of sitting all these months for nine months. I never hear that symptom of anybody having. When I sit it goes straight up my spine and puts pressure on my neck and my shoulders very bad burning feeling and aching. Also now my limbs are starting to burn bottom part of my legs the bottom part of my arms very bad and I had to get on gabapentin and I'm on 1800 mg a day. That helps with the burning. I do have the head rushes the ringing in the ears and I've had the bad dizzy spells and almost passing out spells and the heart racing. I've lost my voice completely for a couple days this happened a couple times. When I read on here all stories it helps to make me feel like I'm not alone. My sister has just been diagnosed with this also my mother had scoliosis so we wonder now if she did have it? She has passed now. My sister is just starting the process she has a sphinx so not sure what The neurosurgeon is going to tell her. I just would like to tell everybody that I read your stories and if I can I pray for them  it touches my heart because I know the pain that I've been in and they even have more pain  so my heart goes out to all of you Who are suffering. God Bless you all!!!
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Hi! I have been reading a lot of stories of people that have Chiari malformation on here. . So I thought that I would share my story. It started back in July 8 of 2014. I woke up with a very sore knot in my back. It didn't go away I didn't do anything with it for maybe three weeks and finally couldn't take it so I went to a chiropractor where I was told that I had three bulged disks in my C-5 c6 and  C-3. I chiropractored every day for a couple weeks and then I went to three times a week did this for a very long time and nothing worked went to a pain specialist and did the shots and they didn't do anything had pain medicine but didn't take it. Made appointment with a neurosurgeon and they found it right away on my MRI. Had many more MRIs had one with the contrast had a few more appointments with him as these were months apart because he is very very busy because he has a very wide practice but he is a very good surgeon. Told me that I would need to have surgery and I am waiting next Friday I have my decompression surgery. The funny thing is though is that I never had headaches which amazed him.A lot of these symptoms that I see with peoples stories I do not have praise the Lord for that. But the major thing for me has been that I have not been able to sit down in a chair or any kind of sitting all these months for nine months. I never hear that symptom of anybody having. When I sit it goes straight up my spine and puts pressure on my neck and my shoulders very bad burning feeling and aching. Also now my limbs are starting to burn bottom part of my legs the bottom part of my arms very bad and I had to get on gabapentin and I'm on 1800 mg a day. That helps with the burning. I do have the head rushes the ringing in the ears and I've had the bad dizzy spells and almost passing out spells and the heart racing. I've lost my voice completely for a couple days this happened a couple times. When I read on here all stories it helps to make me feel like I'm not alone. My sister has just been diagnosed with this also my mother had scoliosis so we wonder now if she did have it? She has passed now. My sister is just starting the process she has a sphinx so not sure what The neurosurgeon is going to tell her. I just would like to tell everybody that I read your stories and if I can I pray for them  it touches my heart because I know the pain that I've been in and they even have more pain  so my heart goes out to all of you Who are suffering. God Bless you all!!!
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Hi! I have been reading a lot of stories of people that have Chiari malformation on here. . So I thought that I would share my story. It started back in July 8 of 2014. I woke up with a very sore knot in my back. It didn't go away I didn't do anything with it for maybe three weeks and finally couldn't take it so I went to a chiropractor where I was told that I had three bulged disks in my C-5 c6 and  C-3. I chiropractored every day for a couple weeks and then I went to three times a week did this for a very long time and nothing worked went to a pain specialist and did the shots and they didn't do anything had pain medicine but didn't take it. Made appointment with a neurosurgeon and they found it right away on my MRI. Had many more MRIs had one with the contrast had a few more appointments with him as these were months apart because he is very very busy because he has a very wide practice but he is a very good surgeon. Told me that I would need to have surgery and I am waiting next Friday I have my decompression surgery. The funny thing is though is that I never had headaches which amazed him.A lot of these symptoms that I see with peoples stories I do not have praise the Lord for that. But the major thing for me has been that I have not been able to sit down in a chair or any kind of sitting all these months for nine months. I never hear that symptom of anybody having. When I sit it goes straight up my spine and puts pressure on my neck and my shoulders very bad burning feeling and aching. Also now my limbs are starting to burn bottom part of my legs the bottom part of my arms very bad and I had to get on gabapentin and I'm on 1800 mg a day. That helps with the burning. I do have the head rushes the ringing in the ears and I've had the bad dizzy spells and almost passing out spells and the heart racing. I've lost my voice completely for a couple days this happened a couple times. When I read on here all stories it helps to make me feel like I'm not alone. My sister has just been diagnosed with this also my mother had scoliosis so we wonder now if she did have it? She has passed now. My sister is just starting the process she has a sphinx so not sure what The neurosurgeon is going to tell her. I just would like to tell everybody that I read your stories and if I can I pray for them  it touches my heart because I know the pain that I've been in and they even have more pain  so my heart goes out to all of you Who are suffering. God Bless you all!!!
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12573102 tn?1431705217
Hi & sorry to hear that you and your sister are dealing with this.  Sounds like you have some symptoms that maybe related conditions like POTS & tethered cord.  Have you been checked for related conditions (Selma will be able to explain these conditions much better than me) since Chiari patients unfortunately have them often.  I am almost 3 weeks post op of my 2nd surgery because I had a sneezing attack 5 weeks after my decompression surgery.  Unfortunately for me I had to have 2 brain surgeries within a 9 week period, but it has still been worth it thus far because I feel much better than before my surgeries.  I actually had trouble walking (had to look at my feet or I would get off balance)........I can now walk normally since surgery.  I will keep you in my prayers that your surgery goes well & wish you a speedy recovery!!  
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14494512 tn?1434833506
my daughter was born april 23rd of 2014. When in utero she was diagnosed with hydrocephalus and had 2 surgeries for the hydro, she had her shunt placed during the second surgery.. In November of 2014 she was diagnosed with Chiari type 1. Well she is 15 months and was just diagnosed with delayed swallowing and dysphagia. Her developmental Dr. thinks her dysphagia may be caused by the Chiari but her neurosurgeon told us when she was diagnosed with the chiari that it wouldn't affect her at this time but maybe as she gets older... At birth she was kept over in the nicu due to not eating and blue spells which we thought maybe because of the hydro. Her chiari was 9mm in November of last yr. is that big? Could she of had this at birth and it went unnoticed due to the csf build up? Could this be causing her swallowing issues? Her surgeon is great as a surgeon but he doesn't explain anything to us even when he is asked to, I feel he specializes more with the hydrocephalus than the chiari. Could the Chiari of caused the hydrocephalus?She also at birth had low conus of the spine and a sacrum dimple is this in anyway related to Chiari? We now have so many questions since we are now being sent to different Drs. trying to figure out why she is having swallow difficulties...Thanks in advance for any help!!
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620923 tn?1452919248

  Hi....The hydro could have caused the cerebral tonsils to herniate....

Chiari is the malformation of the skull but too many Drs will call any herniation of the cerebral tonsils Chiari...when they are 2 different things.However, the symptoms can be quite similar and treatment would be the same as well.

The sacral dimple is usually an indication of tethered cord and yes, this is related to Chiari...in fact it is one more condition which can pull the tonsils down to herniate....and can also lead to scoliosis..

As I mentioned in your other thread, yes many with Chiari do have swallowing issues but I can not say that is why your daughter is having those issues but I could consider it a possibility.

I would encourage you to learn as much as you an about Chiari and ALL related conditions and research Drs....a true Chiari specialist should be able to help you with just about all the issues your daughter is faced with.
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14494512 tn?1434833506
Thank you so much with your response. I'm going to start doing more research and try to locate other Drs. in our area who might specialize in Chiari . How would I know if a dr. in specialized with it? We live in Pa our daughter currently goes to a ns in Wilminton , Delaware. Thank you very much

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14494512 tn?1434833506
I just went onto her medical record and found this, this is the first finding of the "Chiari" I'm not to sure if this means it's actually Chiari or is it just like you said the herniation of the cerebral tonsils..

A small posterior fossa with herniation of cerebellar tonsils by approximately
9 mm is identified. The cerebellar tonsils are pointed in configuration with
moderate effacement of CSF spaces at the craniocervical junction.

Marked thinning of the Corpus callosum is again identified. Septum pellucidum
is absent. Brain parenchyma is otherwise stable in appearance..

Paranasal sinuses: Clear.

IMPRESSION:

Interval development of Chiari one with effacement of CSF spaces at the
craniocervical junction.
Ventricles are slightly less prominent in size as compared to the prior study.

   again thank you so much, I didn't know where else to turn until I located this thread.
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620923 tn?1452919248

  May I ask where in PA you live?

We do have a list of Drs....some do not treat children, so I will let you know which  ones will....

There are specialists in NY and in FL that treat children.....and in MD.

A small posterior fossa indicates the skull is small which is what Chiari is....

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy

The Chiari Neurosurgical Center@ NSPC
Dr. Paolo Bolognese  MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390

Dr. Eric Trumble
Director of Congenital Neurosurgery at the Walt Disney Pavilion at Florida Hospital for Children
He has double-board certification (adult and pediatric neurosurgery)
615 E. Princeton Street, Suite 540
Orlando, Florida 32803
Phone: 407.236.0006
Fax: 407.236.0007
http://www.neurosurgeons4kids.com/

For Delaware these are the only names but I am not aware of them or if they are true specialists......

The more you educate yourself on Chiari and ALL related conditions the better at knowing when you have the right Dr.
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14494512 tn?1434833506
Hi Selma,
We live close to Philadelphia . It's Brookhaven, P.A but we usually travel to Wilminton, Delaware most of our Drs. imcluding our neurosurgeon is located inside Alfred I. Dupont Children's Hospital.... Thank you we are going to take a look into some of these Drs.
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620923 tn?1452919248

  Hmmm then you are not that far from me....

Good  luck and do keep me posted on your Dr search.
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