stage 1 of chiari malformation does it get worse - Chiari Malformation

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stage 1 of chiari malformation does it get worse

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Jamie8306

Jan 03, 2011

To: SelmaS

SelmaS,

Thank you for your response I will be asking those questions tomorrow. I do not believe he has anxiety. I am very angry right now because I have some family and friends that believe I should just leave him be because they do not believe there is anything wrong besides my son being high strong. I really dislike when others try and step in with no knowledge of the issues at hand. That is why I set search for a place just like this. I also have all the symptoms of Chiari but have not been diagnosed or even to a doctor too be diagnosed due to the fact I am trying to figure out what to do with my son.

Troy was born August 8th, 2006 a beautiful little 8 pound 5 ounce 21 1/2 inches long. However, I had noticed something did not look right with his eyes and he could not focus. Then his little legs turned in almost like he had CP. I continued to speak out to family and friends asking their advice seeing if they had noticed. Of course I got your just worried stop worrying so much. Months started passing and milestones were not being met. I then turned to the doctor's and they kept telling me that every child is different and to give him time. So I did well when we started feeding Troy regular table food he began to choke at every meal and his eyes would roll up and to the right. At this point meal time was exhausting for me because I was always getting up to get him unchoked. At thirteen months old I had Troy and his older sister watching Cookie Monster on tv with swirling colors in the background. Alana which is my daughter had got up and came over to tell me there was something really wrong with Troy. Troy's eyes rolled up into his head and to the right. I could not get Troy's eyes to come back down to focus. His eyes would come down and go right back up. I thought my son was having seizures so I rushed him to the nearest hospital for them to tell me that they had no clue. They called over to Children's and had us transferred and at that point we under went every test possible. After three days of no one knowing what the issue was the neurosurgeon walked into our room and drew a picture of a brain up on the board. She began to explain what Chiari One Malformation was and how this is what was affecting his eye movements. Since then it has been an up and down roller coster ride.

I will absolutely keep you posted on what happens and again I really appreciate your advice maybe with these questions I will get some answers.

Jamie8306

Jan 04, 2011

To: ALL

UPDATE.....

I took Troy to his appointment today and was told that another MRI was needed to see if there had been any change with his malformation. However, I asked the doctor about the swelling in the back of Troy's head and he told me to take him back to his regular doctor because swelling has nothing to do with Chiari. I am really confused???? Anywho they have now directed us to the G.I. Specialist along, the Tempertantrum, Clinc, The Speech Clinic, the Swollow study team, the feeding team, the drool clinic, and he has to be fitted for a new helmet for his headbanging. Then I have to take him to a psychologist as well.... I am too my wits end.... I am seriously thinking about taking him to another specialist out of state but I will wait to see what the MRI comes back as. The doctor says that if it comes back abnormal then they will do surgery if not they will leave him be. I just do not get how the head swelling has nothing to do with Chiari because it is swollen where the malformation is. I need some advice please....

n40066

Jan 04, 2011

jamie....did you take troy to a chiari specialist?

selmaS

Jan 04, 2011

To: Jamie8306

Hi...I am with Lizzy...many drs can tell u if u have chiari, but not enuff of them r experienced enuff to treat it or fully understand how if can affect us.....a true chiari specialist is more experienced on how it affects us and does a lot of their own research.

There r chiari specialists that treat only children and some that only treat adults so keep that in mind when u r looking for a dr....

If I knew where u were located I might be able to offer more info, but do look at our specialist thread-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

Jamie8306

Jan 05, 2011

To: all

I thought just by taking him too Children's Hospital Neurology dept. would give me some answers. I didn't know I need to find a specialist... I am located in Milwaukee, Wisconsin. So my question is does the back of the head swell when there is a fluid build up or a cyst? Thank you very much for the website I will begin to research my options.

selmaS

Jan 05, 2011

To: Jamie8306

If it is chiari u deff want a specialist....

It is possible it is an abundance of CSF causing the swelling...until u get it looked at it is hard to say for sure.

Please keep us posted on ur DS's progress and urs on finding a dr.

"selma"

reindeeru4u

Feb 09, 2011

To: diego 619

Diego.... A very excellent neurosurgeon in sd...Dr. Bulghari....have him check you out...good luck....
he's in the med ctr across from Sharp Memorial Hospital in kearny mesa...
good luck...

terrieann914

Mar 20, 2011

To: anyone

I have Chiari Type 1, I am 41, and at night I am awakened sometimes by a burning hot feeling in my skull area, does anyone else do this? but otherwise I am healthy, no bad headaches, just I cant get words out like I want at times, Im active with weight lifting as well and I wonder if that is bad or good. I hate drs so I avoid it. I was seeing Dr Ovolie at Kirkland CLinc in bir Ala.

selmaS

Mar 22, 2011

To: terrieann914

Hi and welcome to the Chiari forum.

Since u have been dx'd with chiari u should get evaluated by a true chiari specialist to see what is going on, if u have a CSF blockage or overcrowding....not everyone will get the dreaded headaches.....but u do need to avoid some activities until u know for sure exactly how this is affecting u as straining with lifting can cause this to bcome worse......

I am not familiar with the dr u mentioned, but we do have a list of drs for u to research, they may not all be close to ur home...but a good chiari dr is worth traveling for.This list is also not meant as a referral.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

"selma"

Mickey8228

Mar 25, 2011

To: Selma

Hi,
Over the past month I have been experiencing certain symptoms so I began doing research. I have always suffered from headaches and neck pain but was in an accident so I always contributed it to that. Lately I have began getting dizzy, both hands going numb for no reason and Im having trouble forming sentances both written and speaking. I have felt very foggy headed. I do not have health insurance so Im not sure how I am going to be able to get dx or treated for anything, thats why I have been doing research myself. I have always had very sloppy hand writing and trouble w/ hand and eye coordination. Do these symptoms sound relivent to Chiari?

selmaS

Mar 25, 2011

To: Mickey8228

Hi I did reply to this post on another thread......

"selma"

margiea

Apr 30, 2011

To: all

I'm really struggling with my chiari. Had 2
Brain op's last one 2months ago and still
In bed not seeming to make any progress.
Have a shunt in too. I miss being myself,
I miss my work. The medication has changed
My apprearence. I don't know who I am
Anymore and the tingling,pain and nausea
Is just getting to me.

selmaS

Apr 30, 2011

To: margiea

  Hi and welcome to the Chiari forum.

I am so sorry u r struggling with ur recovery.may I ask for u to give a bit more detail on ur 2 surgeries?.....

Was ur shunt surgery ur more recent and a result of a post op issue with CSF?

  Several members have had this problem, not all have gotten a shunt.

   May we also ask who ur NS is, and what they feel is the reason u r having these issues?

  "selma"

dlavender

May 17, 2011

To: selma

Hi Everyone, I'm new to this forum. But I too was told I have Chiari 1. That was 5 years ago. I've had headaches since my child bearing years.Most of the time the headaches would be so bad I couldn't function. But during that time I was a stay at home Mom with 4 children. My parents would come to help me when I was in pain. I'm now 58 years old and the symptons have become more and worse. The Dr that diagnosed my Chiair, didn't tell me I had a malformation, only told me I would never be able to have a spinal tap, because my brain extended beyond the skull. Never told me it was the cause of my headaches. Well by accident, or better yet by my best luck, I found out about Chiari when I started looking into the cause of my [now worse] headaches. I've found that the things I've always thought were my imagination or were related to going through the change of life, are possibly related to Chiari. My report of the MRI from 5 years ago states I have a 8.2mm projection of the right tonsil and the left mildly topic and sightly low.. I had a new MRI on 5/13/2011, now I'm waiting to hear about the results. I have most of the aches and pains mentioned here. This really affects my daily routine of life. I do work,and it's a very active job, I think what I do at work has a big effect on how I feel. I'm glad I found this site. And please tell me about Chiari specialist in the state of Georgia. THANKS

selmaS

May 17, 2011

To: dlavender

Hi and welcome to the Chiari forum.

Not all of us have a chiari dr close to us so we may have to travel.We do have a list that is compiled of the members own drs.U do have to research all drs to find the one that is best for u.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

"selma"

lhall030

May 26, 2011

To: dlavender

I was diagnosed with a chiari 1 in july 2009. It took 3 months of constant pain, partial parlysis, memory loss, disorientation and several doctors before any of them believed what was going on with me. Over the last almost 2 yrs my symptoms are beginning to be ALOT worse when they hit. I am a single mother raising my children on my own so it is very hard to care for them when i am in so much pain i can't move at times. I did however find it very helpful to sit down with my kids and explain what was wrong with me to my children once it was explained to me by my doctors. I am now hoping to be able to go to the mayo clinic so to try to find other options for treatment. The doctors in my area aren't very familiar with the condition so they do not understand what medications do and do not work. They still have the mentality that you fill the person full of pain medication which does not work with this. I now just refuse the pain medication when they try to give it to me. To many of them look at you like you are a dope head in there trying to get pain meds. Well i'm not. They can keep the pain meds just fix what is wrong. I just wish people really understood what it is like to have this. Too many people have no idea what it is.
thanks,
lhall

dlavender

Jun 03, 2011

To: Selma S

Hi Selma, Just returned from the Neurologist's visit, I felt like I didn"t know what I was talking about. The Dr. told me chiari 1 malformation was a "normal variant", WHATS THAT! Was she saying that what I'm going through is normal? I don't understand!!! The Dr gave me med's for headache and another med for the pain in my shoulders. With a back up med in
case one didn't work. Is it normal for the right side of the brain tonsil to extend down 8.2 c? Would someone please explain!! I'm here at my computer addressing you guys and my head hurts. Earlier in the week I chocked on a cookie and inhaled a piece of the cookie into my lung. I now have pneumonia. When I cough the pain is so severe I want to scream. But that may make the pain even greater. The DR want's another MRI this time, of my neck. I don't know what to think. So I'll get another MRI!!! I only want someone who understands what I'm going through. Thanks for your help.

selmaS

Jun 03, 2011

To: dlavender

Hi, there r many drs that feel many people have a herniation from chiari and have no symptoms, I disagree, I feel many adapt to how they feel, do not complain about much of it as they feel it is normal...when u adapt and adjust to avoid pain, that is not asymptomaic.....ugh...some Drs just do not have a clue.

Do u have copies of ur MRI that shows ur chiari?

Is this the first cervical MRI?

Have u had a MRI of the thoracic and lumbar spine too?

Getting a true chiari specialist is what u will want to do next.

"selma"

dlavender

Jun 04, 2011

To: Selma s

Hi Selma, I've had 2 MRI's taken one 5 years ago(first findings) and another 2 weeks ago, there were no changes, But my symptoms are back and are worst.I do not have actual images but a type written diagnosis. I'm having another MRI on Monday, June 6th this will be of my neck. Then followed by the spine, I'm not sure when this one will be done. I will be in touch with another Dr. I'm looking for a specialist. Thanks for your help!

selmaS

Jun 04, 2011

To: dlavender

  U can contact the facility that did the original MRI's and request copies on a CD....this will give the Dr u r currently seeing something to compare to. The report is just an opinion of a radiologist, not of a chiari dr...who for the most part do not read the reports, they like to view the films themselves.

  Good luck and do keep us posted

        "selma"

tllinker

Jun 06, 2011

To: All

My sister, who is 39 was diagnosed two weeks ago with Chiari 1. She went to the Dr. because she had severe pain in her face.(left side). Our mother has had to surgeries to kill the nerves in her face from the pain. So when the pain started she wanted to see if she had the same thing. She had the MRI and the Dr. came back with the surprising news of a 5 mm, Chirari malformation diagnosis. We have all had migrains all our lives and she was no exception. She has headaches all the time and they are getting worse. She now has the pain in her face and tingling in her arm and hand(s). Two weeks later she has had the third MRI and it has grown to 7 mm. She has an appt. in Dallas with Dr. Richard Jackson. Does anyone know anything about him? He is the only one there they show specializes in Chiari. This would be about a 5 hr drive. They seem to be the closest. Thanks for any help.

selmaS

Jun 06, 2011

To: tllinker

Hi and welcome to the Chiari forum.

It is possible that other family members do have this condition as well....has neone else had a MRI?

As for it growing, it is also possible that the people reading the MRI's either r measuring from diff points, or the MRI's r of a diff slice and the herniation can appear to grow.....

I am not familiar with the Dr, but it is good to educate urself on chiari and see what the dr knows and suggests...that is one way to find a dr, outside of talking to others that went to the dr.The names of Drs on our list r from the members here, unfortunately not all the members that added names of their drs r still active.

Not everyone will find a true chiari specialist close to home, so she may need to travel....I did, and I know it is better to travel then settle for a Dr that just is not the best in this area of expertise.

There are diff org groups that will fly chiari patients to Dr visits as well as to surgeries...so do look at the Health Pages Link page for more info.

  Ur sister should be getting more testing- a CINE MRI to check for CSF obstruction, overcrowding, sleep apnea, a syrinx, ehlers-danlos, ICP....plus rule out other conditions with similar symptoms...like MS, LYMES,and LUPUS.

  Please keep us posted on her progress
      "selma"

carol721

Sep 29, 2011

my son was 2 yrs. old when doagnose with seizure disorder and chiari 1 malformaton 6mm. from mri test, he had another mri months later and the Dr. told me it much of closed up on it's own when I asked him about it.
Can that really happen? I don't want to wake up years down the line to fine my son stop breathing. Can anyone tell me the truth about that?
Carol

selmaS

Sep 29, 2011

To: carol721

  Hi and welcome to the Chiari forum.

I am not sure what u r asking, if ur son can out grow his chiari herniation...yes, this has been known to happen when it was not a true chiari malformation. This is the result of low lying tonsils as a result of  a trauma or hydrocephalus that pushes the tonsils out...however, if the other issue resolves, so can the tonsils especially in young children.

But, the comment "much of it closed up on it's own" does not make ne sense to me...u do not want this to close off as it would create a CSF obstruction. Find a Dr that is well experienced with pediatric chiari and have them test ur DS.

Having him tested for sleep apnea if this is also a concern should be done as this is an issue for those with chiari.

Always request copies of the MRI and the reports of all testing so u can easily go for another opinion.

   "selma"

Patacake3578

Oct 15, 2011

To: Selmas

I am a 60 y/o woman..MRI revealed Chiari I malformation..cerebellar tonsils 5mm below foramen magnum.I have floaters,buzzing ears,feel like I have ear infections,but doc never sees an infection,have numbness in hands,sleep apnea/snoring.vertigo ( was in hospt for 3 days for continuous vertigo),hearing loss ,see "stars" often,and a lot of balance control issues( falling).The ideal of brain surgery scares me..I see a neuro doc tomorrow.Glad to find this group! Pat

selmaS

Oct 15, 2011

To: Patacake3578

  Hi and welcome to the Chiari forum.

Well u've come to the right place as we all understand how u feel.
Be advised not all NS's r experienced as much as u will want...do see a few and compare do not go with the first one that offers surgery as it is not a cure or a fix....it may help some of the symptoms, but it is done to slow progression and restore CSF flow.

Do not rush into making a decision about surgery unless it is a medical emergency...give urself time to research the drs and be comfortable with them and their course of action.

We have a list of drs compiled by the members drs, this list is not meant as a referral but  as a means to help u begin ur research...be advised many of us do have to travel to get to a true chiari specialist.

  http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  To find out more about those that already had surgery, click on our names to see our journals, many have our chiari surgery experience posted....

   "selma"

elisar

Oct 17, 2011

Hello my name is Grace Leos and i am 52yrs old i have Arnold Chiari 1 and had surgery in 1995, since January 17th when i fell and hit the back of my head i have been having problems i have been to the hospital 5 times,and still no MRI has been ordered even though i have good insurance, my right hand is almost always weak and my right leg fells like i have no feeling, but when i go to the E.R all they give me is pain meds and after almost 10 months still no MRI. I need help just don't know where to go can some one please help me i live in San Antonio Tx

selmaS

Oct 17, 2011

To: elisar

  Hi and welcome to the Chiari forum.

Have u been back to ur NS that did the original surgery?.....We do have a list of drs that u can use to research to find one that is right for u.,
The list is not meant as a referral...only a means to help u get started with ur research.Be advised u may have to travel some to get to a NS that is well experienced with chiari.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  From my experience the ER is not the place to go when u have chiari unless u have life threatening symptoms.Find a NL or a NS that is a true chiari specialist and go from there.

I am so sorry u r feeling so poorly, but, I must say u went a good long time  doing well....

  Glad to welcome u, sorry for the reasons u had to seek us out.

          "selma"

joleen123

Oct 18, 2011

Reading all these post were so helpful. My daughter has been suffering with headaches and always complains of stomache ache. I can not tell you how many trips were made to my PCP before she finally sent us to a Neoroligist at Valley Childrens Hospital. I told him about her headaches which she gets on average 5 times a week and her neck is always hurting and on occasion vomits. He recommended physical therepy and ordered MRI. I was contacted last week by phone to tell me she had Chiari Malformation and to not do contact sports, a nd also she is on the cheer team at school and was told she could not do that anymore. She is only 13 and loves it,broke my heart to tell her. He did not give me alot of info on phone but can not see us until middle of Dec. I am frustrated and worried to say the least.I have so many questions but have to wait 2 months. She has speech problems and did not even talk until she was almost 4. She loves school but has to work twice as hard at it. she does not comprehind things when reading. Also her eye sight is constantly changing and complains about bluryness. I believe this is all related to her Chiari and cant beleive it took 2 years to be diagnosed. My main question is what is so dangerous about contact sports??? He also mentioned putting her on home hospital for school because she has to miss so much school due to being sick all the time. She comes home from school and is so fatiuged takes a 3-4 hour nap, Is that part of it??? Can't wait until I get answers. Thanks so much for your blog,as I know I am not alone.

selmaS

Oct 18, 2011

To: joleen123

  HI and welcome to the Chiari forum.

  2 yrs is really not that long...I had issues as a child and was not dx'd until age 48....so she is lucky.

At the base of the skull is an opening called the foreman magnum this is where the spinal cord and brain stem connect and this is where the cerebellum part of the brain is herniating if hit in the head and her neck the wrong way this can affect the cord, brain stem and brain in one fell swoop.

  The more active we r the more CSF and blood flows which will make the small area tighter....and the pain more intense.

  Fatigue is a huge part of this...pain drains us and daily activities r very draining.....I can not imagine going back to school...as I know how difficult it was the first time for me....reading, concentrating and dealing with all the noise, and activity...can be a bit much and then add typical teen stress.

  "selma"

Mikevdh

Oct 28, 2011

To: anyone who knows

Hi all,

So glad I found this forum since I'm told my condition is very rare (maybe not so much?). A year and a half ago I collapsed with a headache that I could not comprehend. I rarely got headaches before that but there I was in the fetal position crying like a baby. I went to the emergency and they immediately ordered a CT scan. I was soon diagnosed with Ciari's and was given an MRI within 2 weeks. That's pretty amazing since I'm in Canada. We usually have long waits... but that's partly because of the other amazing part of being in Canada... none of this costs me a penny.
The neurosurgeon saw me soon after and told me the descending tonsils were the most significant he'd seen at about 16mm. He explained the surgical treatment but said to wait for more symptoms since the CSF passageways, though quite narrow, were not currently blocked. Thankfully I don't think I've had a lot of symptoms. I get more headaches than I used to but nothing like that one attack and nothing like my wife's sever and frequent migraines so i don't complain. I do have weird feelings in my neck (sort of squishy??) but assume it's mostly my imagination. I have long suffered from pronounced tinnitus but think this has more to do with drums, gunfire (Army cadets as a teenager), and hereditary hearing loss. All in all not sure I am having too many symptoms.

Sorry that was so long... now for the question.

How often should I get checked (as in a follow up MRI).

The neurosurgeon did not give me a timeline for check ups. I asked, but he said wait for symptoms. I thought this wasn't the best advice since the development of a syrinx could cause irreversible damage. But I can't seem to find advice on this on the official sites. It doesn't cost me anything to get further tests but the wait can be very long (I got in so quick the first time because the powers that be thought my condition could be dire at the time). I don't want to take up valuable MRI time from needy patients if it isn't necessary. As for peace of mind, it is mostly my wife that worries.
So if anyone has some sound medical advice or experience on this I'd really appreciate it.
Thanks! :)

selmaS

Oct 29, 2011

To: Mikevdh

  Hi and welcome to the Chiari forum.

It is highly possible that u do/did have more symptoms but  attributed them to something else....many do...we adapt to them, consider them normal or think our pains r from overdoing it.

The CSF obstruction is more of an issue than the length....symptoms r also more important too...just how this affects ur overall health is what ur Dr should look at.

Once u have the DX u need to find a true chiari specialist...get a few opinions on how this is affecting ur overall health....

   "selma"

JenOKane

Nov 02, 2011

To: New here...

I just found out that I have Chiari 1 Malformation. I am going to see Dr. Verna Porter of UCLA on Nov. 8th. I've been doing a lot of research and I'm scared. My cerebellum tonsils are 8mm, I know that's not huge but it is concerning to me. I have extreme short and long term memory loss, major fatigue, slurred speach, mild headaches and more. I'm only 32 and feel like this isn't the way I should have to live, but I don't know that I want to have the surgery... I've read so many horror stories. And advice out there for me? Thanks! Jen

samc2011

Nov 09, 2011

To: selma

Please help me i am suffering from severe headaches heavy legs and my legs and arms feel heavy i got severe nausea and my doctors have been putting it down to depression for about 8 months now all i do is cry because im in so much pain with these headaches and no one will help me, i had a ct scan done aswell with came back normal and a lumbar-puncture which came normal aswell i am due for an mri scan but im so scared i dont wanna die and leave my 2 year old boy please help me!!!!!!!!!

selmaS

Nov 09, 2011

To: samc2011

Hi and welcome to the Chiari forum.

First know that u r not alone....and leaving ur son will not help. Do u have copies of the CT scan?...or the report?...if not request it as well as copies of ur MRI and the report when u go in for the studies.....many times we r told the scan was "normal" when in fact it showed Chiari....not all drs r informed on how it can affect us, so u need to educate ur self and find a dr well experienced with Chiari if that is what u have.

Please see our drs list in the health pages for names of drs to start ur research...this list is not a referral.
Health pages is located at the bottom right of this form page.

"selma"

lee1414

Nov 28, 2011

Hello Everyone,
I started having problems August 2010. I don't know how many trips to the ER I made. They kept telling me that it was muscle fatigue, and continued placing me on muscle relaxors. After 8 months they finally did an MRI which showed I had Chiari Malformation Type I. I then found out that I had 2 syrinx, one at level C6-7 and T 11-12 measuring 2mm each. They did surgery 3 weeks later, but did not place a shunt. I recently had another MRI showing not much change. Overtime do these syrinx shrink? Or can they continue to grow? Also I am still having blurred vision, and have gone to the Optometrist several times, each time I go it's like my vision changes. Also I am about 7 months out of surgery and am still having hair loss. Is this caused from the anesthetic? Or does Chiari Malformation cause lots of hair loss?? Thanks so much for your help!

selmaS

Nov 28, 2011

To: lee1414

  Hi and welcome to the Chiari forum.

Surgery is a trauma to our bodies and hair loss is our bodies way of indicating it went thru a trauma....it can also indicate other health issues and many with chiari have auto immune disorders like Hashimoto's thyroiditis which can affect hair loss as well, so ask about getting a full blood panel for auto immune thyroid issues not just TSH.

A syrinx can shrink after PFD....and it all depends on the type of surgery ur Dr did....and since all of us r diff it may take longer for ur syrinx's to shrink....so have grown larger post op...and that is an indication that something else could be going on like ICP.....

Depending where ur syrinx is, will depend on the symptoms u r still having....

  DO u know, did ur Dr rule out all related chiari conditions?

     "selma"

lee1414

Nov 28, 2011

They have done a panel of Blood test checking for thyroid disease. Everything with that came back normal. Which is a good thing!!! I am thinking it is most likely all of the trauma my body has been through.
What is ICP? I know for sure the syrinx have not grown, but not much change as far as them getting smaller. I am not sure about him ruling out all related chiari Conditions either. He just told me that 90% of my problems came from this malformation, and it could take over a year for me to see much change. I am doing better, still not back to my old self though.

selmaS

Nov 28, 2011

To: lee1414

Unfortunately when they do the blood panel for thyroid, they only test TSH and it can come back "normal" even tho u have an auto immune thyroid condition. I had this happen to me, and if it wasn't that my Dr was doing an ultra sound of my carotid arteries it would not have been found ...Hashimoto's can cause nodules to form on the thyroid itself....and I was again tested doing the other labs and finally it was showing up.

U may also want to try a low dose of magnesium...talk to ur Dr about it.

ICP= is intercranial hypertension...also known as pusedo tumor cerebri.

It is excess CSF fluid ...no one really knows y the body over produces or can not absorb the fluid...it causes pressure HA's.

It can take up to 2 yrs to feel better post op....and u may never get back to ur old self...but a new one, as u may always have some residual issues.

"selma"

lee1414

Nov 29, 2011

Thanks for ALL of your help! I greatly appreciate it!:) It's nice to talk to someone who understands!:) One last question for now..

Is it common to need the Decompression surgery again? Or for a typical surgery for the Chiari does ONE surgery usually take care of the problem?

selmaS

Nov 29, 2011

To: lee1414

It is possible to need more then one PFD...reasons range...first NS doing the first surgery may have chipped away too much bone(not experienced enuff) and caused a condition known as cerebral ptosis or brain slump.

Another reason could be the surgeon did not chip away enuff bone and there is still an obstruction.

There are diff types of PFD and not all open the dura, some are less invasive, and sometimes they find they have to go back in and open the dura and do the more invasive surgery....

and last, they may have to re-do due to scar tissue forming post op.

"selma"

stacella68

Dec 01, 2011

To: to whom it may concern

Do you become disabled with this problem ? I see neurosurgeon on Dec. 5 for consult for surgery. I'm scared of surgery.

selmaS

Dec 01, 2011

To: stacella68

  Hi and welcome to the Chiari forum.

This is a diff question to answer as it all depends on u, and how ur body responds to surgery if u do indeed have surgery and meds....some that have this surgery are able to go back to work with minimal restrictions, while others are not able to go back to work....

Do u know if u have ne related conditions?...ie- a syrinx, tethered cord, disk issues, ICP, sleep apnea, EDS, CSF obstruction and or overcrowding?

  These are all important, and I urge u to  get a few opinions b4 u decide to move forward with surgery as it is not a cure or fix, just a means to slow progression and restore flow.

U want to get the advice of a true chiari specialist...we do have a list here of the members Drs, and the list is not meant as a referral...just a means to help u get started with ur research to locate the dr that is right for u.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"

stacella68

Dec 01, 2011

i have blockage csf

selmaS

Dec 01, 2011

To: stacella68

Well that is one reason along with what symptoms u r having and how it is impacting ur overall health.

As I mentioned, be sure to see a few well experienced chiari drs b4 u schedule surgery unless u have a medical emergency that would prevent the time of further research....

"selma"

threecutemice

Dec 02, 2011

To: Selma

Hi there.
We have a 27 month old little boy named Noah.  When he was born we almost lost him.  He birthed so fast that there was no dr present and he came out head first with the cord wrapped so tight around his neck 3 times, he flipped heels over head and landed on his face.  I was in the hospital but was not being listened to that i had to push.  Anyways.  He was unresponsive and didn't breathe for the first 20 mins of his life.  He required oxygen and 2 shots of narcan before he was responsive.  We noticed right away that something was not right with his eyes.. They were very large. We had many days of problems with his blood sugars in the hospital and had a hard time with feedings.  Went home to discover that he was severly tongue tied and required his tongue clipped.  He still even then could not suck after the clipping.  I was unable to breast feed him and had to give him a bottle where the milk would just pour into his mouth as he could not suck for the life of him.. The drs were not worried.  We also then found out as we had learned the sound from our first son (apnea and squeaky breathing) that he had tracheomalasia.  He was otherwise a happy, handsome baby.  When milestones were supposed to be getting reached and they were passing by the drs were still not concerned.  He was not able to start solid stage one baby food till he was 11 months.  Could not hold his head up at all until he was 8 months old.  We then finally got an apt with a neuro at childrens here in vancouver, bc.  They wanted to do an mri so we waited for the call. Could not sit till he was 14 months old.  Did not stand untill he was 22 months old and started walking at 25 months. We then got the mri done and was told he had a chiari one. That was the only info we were given and told we would be contacted by a ns and have heard nothing since. He can not eat much of a variety of food.  Yogurt, cheese, soft bread, bananas, mush food only.  He chokes on everything if its not mush. He still has a hard time walking and falls alot.  Hits his head often.  He doesnt talk well but understands.  He sleeps ALOT.  Wakes at 9am and eats and is asleep again by 10am, sleeps till 1pm eats and plays till 3pm and sleeps again until 5pm, eats and plays till 7pm and puts himself back to bed and stays there.  He complains of owie head often and has days where he has a hard time walking and has a few events of standing and falling over and not being able to walk at all for an hour or two.  He drools like a leaky faucet. And he is tiny.  He weighs 20 lbs soaking wet.  His 7 month old sister is 25lbs.  He is starting to get nosebleeds and I have no idea if this has anything to do with the chiari but i am getting scared.  Here in canada it takes forever to get anywhere.  He is a good natured sweet boy but throws tantrums on bad days and bangs his head and acts like a totally different child on his bad days.  Any advice or information I should know would be appreciated.  Thank you.

Andrea

selmaS

Dec 02, 2011

To: threecutemice

Hi and welcome to the Chiari forum.

It sounds like ur and ur DS have been thru quite a bit already...and it does not seem fair that such an innocent child has to suffer like that.

It sounds like he has brain stem compression, that explains the gagging, swallowing issues, and the other developmental delays.

We do have a list of Chiari specialists for Canada, not sure if they are in ur area or how u can go about getting into one, but they are worth looking into.

Always research the drs....educate urself so u know what the Drs should be looking for and doing to help ur DS.

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

  Make sure they rule out a syrinx in all areas of the spine, cervical, thoracic and lumbar....u also want to rule out sleep apnea, tethered cord, ehlers-danlos, ICP, CSf obstruction , overcrowding,and a few others but this is a good start....make sure u  ask that the NS is experienced with pediatric Chiari patients.

  The nose bleeds could be a sinus issue that can be associated with chiari...but do have him checked to make sure.

  The mood changes on bad days is not uncommon for those with chiari, at different ages it is dealt with as  best we can communicate, he can not, so the temper and banging his head is his way to tell u what is wrong.

  Try to let ur DS walk around barefoot as much as possible as balance issues is a Chiari thing and walking barefoot gives a better connection with the floor....

  Once u find the right Dr for ur DS u will see such a big difference in how he is treated and how he feels.

  I hope this is helpful...we are always happy to welcome new members, but never happy for the reasons that bring them.

    "selma"

threecutemice

Dec 02, 2011

To: selma

Noah can not wear shoes. If I put shoes on him he just trips and falls and cries. He is almost barefoot at all times or he has socks with grippers or he wears robeeze slippers so he can feel his feet. Also all the things you asked me to ask the dr about..can you go more into detal about what they are? Thanks.

selmaS

Dec 02, 2011

To: threecutemice

  Sure- a syrinx, is a cyst that can form on the spinal cord, it is a sac that fills with CSF fluid and most likely forms as a result of a CSF obstruction.A syrinx is primarily looked for in the cervical spine, but those with Chiari are known to have them in the thoracic and lumbar spine as well.

Sleep apnea- is when a person is awakened gasping for breathe ....it is something to be concerned about and do make sure he is tested...many with chiari have sleep disturbances....but to stop breathing is not good,.

  Tethered Cord- is where the spinal cord and spinal column fuse at one point the spinal cord is not able to stretch and hang loose like it should as it is very tight...and can cause bladder issues, lower back pain as well as leg pain....

Ehlers-Danlos Syndrome- is a connective tissue disorder...the  tissues that hold our joints in place are too lax, we can be hypermoble or double jointed with joint pain, easy bruising, and slow to heal...there are many types of EDS so this also need to be checked b4 ne surgery as it can affect recovery.

ICP- intercranial hypertension..also known as pusedotumor cerebri.....this is an excess amount of CSF, the body either over produces it or can not absorb it and it creates pressure.

CSF obstruction- CSF = cerebral spinal fluid...obstruction= blockage...this can be from the cerebral tonsils herniatining and blocking flow or a bulging disk can also block CSF.This will create the same pressure as ICP.

overcrowding- this can be the tonsils compressing the brain stem, and can also be the odontoid bone being retroflexed(turned the wrong way) making the opening at the foreman magnum smaller, and creating a CSF obstruction.

  I am glad to hear ur DS goes barefoot as it is best for him with the balance issues...

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