Newly diagnosed with Chiari I

[2GApeachy]

I just got a diagnosis.  When the doctor told me, I was so nonchalant; however, having done more research, this is rather serious, right?  I have seen Chiari support groups, etc., so that got me rather scared.  Also, I was reading some of the posts that said that their cerebellar tonsils extended 8 or 10 mm into the foramen magnum.  Well, mine says that it's 1 cm.  How bad is this?  What should I expect?  

[cherrie1011]

I have been diagnosed with chiari nalformation since 2012 and my symptoms were terrible, I had brain freeze, tingling crawling sensation and numbness, combing my hair and washing my face was a task and still is, I refuse surgery because they would have to remove the three top vertebrae to place a shunt, I'm hanging on in there, no surgery yet.

[selmaS]

  Hi and welcome to the Chiari forum..

No there is not a med that typically works long term for Chiari pain.....it is best to try and avoid activities that may trigger the symptoms and pain....and find ways to relax...listen to your body and do not over do things, these all may help in calming down pain and symptoms.

[PAULILNE]

I was just wondering are there any specific pain meds for Chiari  I have the worlds worst headaches dispersable painkillers work to a point then back to square one any help would be nice thanks

[selmaS]

  Hi and welcome to the Chiari forum.

Did you have a CINE MRI to see if you have  a CSF obstruction? Did they rule out ALL related conditions? I know that some have had to have the pressure checked  using a  LP but I am not sure what you mean by  a probe into the skull???

Is this Dr  a true Chiari specialist?

[jennygault1]

Hi I was diagnosed with chiaria malformation last year and fell pegnant I had to have my baby under general anaesthetic im going into hospital for a probe in scull to check pressure and have to get a full mri of my spine has anyone had this its 1 cm down but that was 9 months ago xx

[Nellan12]

I am not sure what to say to you about holding back your son from all the things he loves.. It is a difficult decision....but I can tell you that you picked a good place for your son to be checked out...  TCI  is very well known and it is worth the Waite!!!! I my self went there and got diagnosed by one of their doctors after see some many others... Good luck :) ...and try to do what  baccalynnwv suggested..I think she gave you very good advice!! Keep posting this is a good group...  My prayers will be with you & your son..

[baccalynnwv]

I would go back to the main chiari page and start your own question there. Copy and paste this. You will probably get more answers as this is an older thread.  :)

[hockeymom6]

My 16 yr old son was just diagnosed with chairi 1 malformation 2 weeks ago.

He was at cross fit working out we it onset.  while doing a pull up hold he got a sharp pain in the back of his head followed by a throbbing continuous pain in the same area. I immediately took him to the ER where we were set home on 2 seperate days saying it was either a muscle pull or headache induce from working out. On our 3rd trip to the ER on day 5 they finally did a CT scan and found one tonsil to be lower then the other and told me to get him in to see a pediatric neurologist.

his pain level has reduced over the 2 weeks to currently a 1 out of 10 from a 10 initially and that is the only symptom he currently has.

My neurologist had Mri's of the Brain,  cervical spine, and CINE flow and all were clear of any issues. his right tonsil is slightly lower then the left (not sure of the actual number) and according to MRI results and therefore states he is within the realm of normalcy, and does not meet the chairi 1 criteria. My neurologist had said he could go back to all activity just no heavy lifting, straining, bearing down activity but I have yet to allow him to go back to anything.

Since I had never heard of this condition I went on line to find out all I could so I can make sure to do anything he needs in order to keep him safe.  I have to say all of the information out there scares me to death. I understand it is not a life threatening condition but rather a life altering condition.

He is a normal 16yr old active, athletic, adventurous kid whose loves to be physically active.  Has played Ice Hockey competitively all his life. and loves to do anything crazy and adventurous.

After reading all I have, I took all of his scans to the Chairi ! Institute in Great Neck, NY to have a team of specialists look into his case.  They contacted me after review his case and set up an appointment for him to see one of their neurologists who specialize in it but not until Jan 15th (2 months away)  

I am a nervous wreck. this is a long time to wait out to get a specialists to tell me exactly what is going on and what I should do for him.  

Its currently ice hockey season and Im not sure if I should let him go back. Im worried that the neurologist that I saw may not be familiar with this condition and be making the wrong call to allow him back to a contact sport.  

It is breaking my heart the thought of taking something away from him that he loves so much and is such a big part of him but I dont want to risk this condition progressing if it can be avoided. obviously I wont let him back to the gym or cross fit so that his doesnt lift any weights. but he is just a kid and loves roller coasters, sports, adventurous activities I hate to pull his whole love of life away if it is not necessary.  

does anyone have any opinion on this.  I am a single parent (my husband was a cop who died in the line of duty) so its just me to make these decisions. I have no one to bounce it off of to see if I am making the right call and cant handle the stress of waiting 2 months to get some information....

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry your DD is having these issues and it is possible to have a plethora of symptoms and be treated for one as a separate issue only to find later that is not the problem.

Get copies of her MRI and the  report....go to where the studies were done and request them.....and then locate a true Chiari specialist.

Numbness and weakness in limbs as well as facial numbness is common in those with Chiari,....the seizures can be related to the meds she was given or to the Chiari itself,.

More testing will need to be done....CINE MRI to see if there is a CSF  obstruction, MRI's of the thoracic and lumbar spine to check for disk issues , syrinx, tethred cord.....then testing for ICP, POTS, sleep apnea, ehlers-danlos should be done, blood labs to look at vitamin and mineral levels....

I know this can be overwhelming, but take them one at a time....research and educate yourself on Chiari and finding a Dr....having the right Dr is key to helping your DD.....

Know you are not alone.

[Hildabeach]

Hi Everyone, I have a problem. My 19 year old daughter was having chest pain and was short of breath. She was taken to ER. Where she also had a convolution in front of me. She is 120 lbs. Her doctor had given her an Rx for concerta. 108 mg a day. The Nerologist and cardologist both said she had been overdosed. But they could not diagnos her as an over dose due to the insurance would not cover her stay at the hospital so now they are saying she has Chiari Malformation type 1. and the toncials are 1cm. I dont know if this is really moral. After the seizue she is having problems with her left side hand numb and left foot is weak. Any suggestions? Thanks Hilda

[Dirk_Daring]

I used to have those episodes of sweating a lot at night. Not real often, but once in a while. I'd wake up hot as hell and sweaty for no reason.

Haven't had one post-surgery.

[selmaS]

  Hi and welcome to the Chiari forum.

The comment you made that your son has not had any problems yet...does not mean he is not having symptoms....for those of us that have Chiari can  confirm most of us have had issues/symptoms our entire life but did not consider them issues or symptoms...bcuz we considered how we felt to be normal..and for us is was...if you constantly feel a certain way it is normal...and how would you know it's not...so not until it gets worse do we know something is going on....

Chiari symptoms also cycle so they could flare when he is sick and then the symptoms are considered part of the flu or what ever...and not connected to anything else....

The best thing I can suggest is more testing...find out if he has a CSF obstruction and how his Chiari is affecting him and his overall health....

I know I had issues when I was a kid....but no answers until I was 48...surgery at 49.....so it is not always a rush to surgery....try to relax and educate yourself as much as you can on this condition and research Drs to find the best one for your DS.

[nicolebra]

Hello, I just read your post and I would love for your input. My son who is 12 years old just went for a mri to check his pituitary glands. Well is pituitary glands checked out all good. The problem is while doing the test they found there was a downward displacement of the cerebellar tonsils, particularly on the right by approximately 9 mm with a pointed configuration. My son has not had any problems yet. What does this mean? He was being checked for growth issues and this is what they find? We are having a specialist look at this but no reply back at this point yet. I am scared and not sure what all this means.

[rod44]

Hi. I sent you a PM :)

[selmaS]

  Hi you can send rod a PM (private message ) or a note so he knows you are  trying to make contact as he is not on here all the time and may miss this due to it being an older thread and not one he generated....

I will also send him a note. : )

[Jennettef]

Hi ive jjust come across your post on chairi im still not sure if i have chairi or not but im trying to get as much info as i can as i do have all of these sympthoms and i live in cork also i would be greatful for any information you could give me.

Thanks

[superparalegal]

http://www.conquerchiari.org/documents/presentations/SYMPTOMS Presentation.pdf

I found this site to be very helpful please take the time to check it out.

[selmaS]

  Good Luck <3

[Ksand]

Thank you :) ill be taking my mom and a list of questions with us to my next appt. ill be finding out the results of the tumor tests as well. After that, I will be getting a second opinion on everything. Thanks for your help, keep you posted!

[selmaS]

U deff r not alone....and not crazy either !

A urodynamics test can help see what issue is going on with ur bladder, I had one and now know I have a nerutogenic bladder as a result of tethered cord.

Also since being decompressed I do not have the same issues like UTI's have decreased dramatically.U may want to see a urologist and ask about testing to see y u r having these issues.....it may be linked to Chiari, but it may not so it is always best to report all symptoms to ur Dr and seek out Drs that can test to see what is going on.

[Ksand]

Yes, I do have bladders. I use to think I was getting UTIs but then it would go away. This feeling keeps happening (and going away).  I know the location of the tumor or my nerve damage could also be causing these things but its very hard to sit back and just wait and suffer. I no longer go to work because of the cognitive and fatigue symptoms that have become unbearable. The more I move the worse the pain gets, and doing nothing while I wait for the results of my tumor and chiari surgery just kills me. I will take a look at that site. Feels better just knowing I'm not alone and not going crazy. :)

[selmaS]

  Yup, I do have issues like that my Dr said it was due to having a neurogenic bladder....do u have ne bladder issues u r aware of?

If I have to evacuate my bladder, but have to wait, I get very hot....to the point of sweating....I do not always wake up until I am all perspired....
It is possible for symptoms to flare and to increase...it can be rapid or slowly...since Chiari symptoms cycle it is possible for this to happen as u said.

Keep a journal and see what triggers ur symptoms...u may have certain activities that affect u that may not have affected me....the best advise is listen to ur body....

Take a look at the list on the Health Pages....

Just recently I have reduced the amount of fatigue I suffer from,.much of it can be from pain, the rest for me was I had IBS and other issues, with the RX of probiotics and magnesium and Vit D, and the addition of a antihistamine b4 bed,  I am feeling better on that as well as sleeping better too.

[Ksand]

Also has anyone ever had a cycled sweating symptom? About 6 months ago, for about one week, I would wake up in the middle of the night almost soaking wet, for absolutely no reason. I'd go to bed cold enough to warrant a blanket and I'd either wake up completely wet and remove all clothing or I would kind of wake up as I was removing my clothing. Either way this sweating was extreme and one of the few I actually mentioned to my mother. But then, per usual, it of course went away. Once again leaving me feeling crazy. I also feel like my symptoms utterly debilitate me in warm weather. New symptoms keep appearing and old ones just keep getting worse, I feel like something is progressing and it's happening quickly. Is this even possible? If so am I doing something to potentially worsen it? Obviously I know to "avoid head or neck trauma"...as if anyone actively seeks it out :/ until I find a new surgeon I don't know what to do...sit idly by and suffer? Hoping for some temporary relief tricks aside from ibuprofen, especially to counter the extreme fatigue and mental hell i feel like im in :(

[selmaS]

  So is the surgery they r suggesting for the tumor or the Chiari?

Well the symptoms coming and going is typical for Chiari, they cycle....

So many with Chiari can relate to ur distrust and dislike of Drs....it can get very over whelming....but to take it a day at a time and educate urself so u know u have the right Dr for u.

What reasons did ur Dr give for suggesting surgery, this may indicate his experience of lack there of...

I saw a few diff Drs and the ones I went to for the surgery tested me for ALL related conditions as well as ruled out others with similar symptoms.

They explained y testing was being done and showed me on my MRI y I needed surgery.

We r all diff as to how we r affected  one bcuz we r diff and 2 bcuz some of us also do have other conditions as well as chiari...so we can not look to see if our symptoms match....but it is how it affects ur overall health.

Some with sleep disturbances should be tested for sleep apnea...and IMHO we all should rule out EDS b4 we consider surgery as it can affect how we feel and heal post op.

There are certain activities we should avoid, see the list in the Health Pages....

Can u list some of ur symptoms, even if u feel they may not be from Chiari list them, u never know.