What happens if I don't have surgery on chiari malformation?

[kellylouise1983]

Please help I have just been diagnosed with the chiari malformation and I am so so scared I have two very small children and I am so frigthened for them i can not put it in to words. I have been told surgery is my best option but I don't want it done the doctor said if i don't he will leave me for a year and then send me for an mri scan to see if condition has detoriated. My symptons are head pain when I get hot, move up and down a lot, cough rigoursly etc it is not un manageable but causes dis comfort. Does any one know how quick the condition can get worse and what happens if left un treated, the Doctor need say that there is a small shadow on my spinal cord which may be fluid being pushed in.

I would also like further babies can this have an effect either with or without the surgery.

Please please any one with any answers or suggestions would be amazing to hear from you. Am in a bad place at the moment.

Thank you so much

Kelly xoxo

[selmaS]

  Hi and welcome to the Chiari forum.

Since this is an older thread it is possible the member you are addressing is not an active member at this time....so you may want to start a new thread asking your questions to the current membership for answers....many over look new posts on older threads......

Symptoms of Chiari will cycle and change and come and go, but certain things we do when we strain can trigger symptoms to flare....so having a baby is a strain on our body...whether it is the delivery,  or the daily care of the baby, toddler or child as lifting can cause strain...

It is very important to know what other conditions you may have along with Chiari before talking surgery or even another pregnancy just to be sure  the best way to go.

AS for the 2nd surgery, some have a 2nd due to issues due to related conditions not found before surgery such as  Ehlers-Danlos.....or a post op issue like cerebral ptosis....

Educate yourself on Chiari and ALL related conditions and research Drs, having the right one is key!

[mrscmuzik]

Thankyou for all your information :)

[selmaS]

  Hi naomba and welcome to the Chiari forum.

Having the right Dr is key !! We do have a  list of Drs for TX but the list is not a referral nor an endorsement, it is a starting point for you to research Drs...and was compiled by the members here of Drs they have been to, treated by and liked.

Educate yourself on Chiari and ALL related conditions as many times it is these related conditions that are unknown b4 surgery that have an effect on recovery.

[mrscmuzik]

I was told after an MRI in my 20's that I had a "fallen tonsil" I had no clue what they meant and I recall them just telling me can cause headaches.. Could stay the same or could get worse...
Ive lived "not really knowing" for close to 30 years dealing with  severe pounding when I cough and neck pain as well as a other mild?(what Im now finding out are) symtpoms
Ive had 2 children, and done pretty much anything, with or without pain, just thinking I was a wreck lol.. but lived my life.  Everyone is different, so I am not you or vise versa, but  ... I've done almost 30 years without knowing or treating or being careful, so I think it is all ok ... Monitering is important I think, and will be getting my first MRI in 30 years,now that I just discovered it .. why no one had followed up Im not sure, and I had no clue what they meant, but am now relieved my headaches etc all have a reason now, and I can take care of my pain accordingly .. refferred to a Neurologist for now, but will definately try and see a chiari specialist and update my MRI  ..

[mrscmuzik]

I think back 30 plus years and am overwhelmed when I think of all the pain Ive gone through now thinking .. it wasnt just me, there was and is a reason, and where others just diagnosed feel stress or fear on a scary diagnosis..  I feel relief and thankfulness that a friend had shared her video of her new discovery and condition... when I read what she had a bell went off and my jaw dropped hearing about this "fallen tonsil" I had been told about so very many years ago..
  as the week has passed after discovering this and running to my doctor.. I am now in reflection mode going back how many years, discovering or remembering daily different things in my life growing up, that "must have been" this ..  
anxious to get MRI to know this is indeed what they had told me, and then finding a specialist (somewhere in canada) that can relate ..  and then to find out what of my symptoms are related to that, and what are not, and where do I go from here
I literally though the migraine type pain I get when couging, sneezing, standing up from bending down postiion etc, was normal ..  so weird ..

[selmaS]

The problem with Chiari is that it is congenital and since we have it from birth we accept many of the symptoms as a normal way to feel when in fact it is not....but it is all we know...and we adjust and deal with it....and not until things worsen do we begin to connect the dots and look back.....

Drs are not well informed to help us, many over look the DX and may never even tell the patient that they have it....

We do have a list of Drs in Canada that may be helpful...it is not a referral nor an endorsement of those listed it is only meant to be used as a tool to research Drs.... Also keep in mind you may need to travel to get to a Dr.
http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

[MeliRecova89]

I too was diagnosed with chiari and the Dr wants to do survey because I have already formed a syrinix  but want to have more babies in the future how will this affect us?

[selmaS]

Here is the list for TX-

TEXAS

Dr. Jeremy Denning
Dr. Richard Jackson
Dallas Neurosurgical and Spine Associates
Presbyterian Hospital of Dallas,
Professional Building III,
Suite 220,
8230 Walnut Hill Lane,
Dallas, Texas 75231
Phone: [phone]

Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax

Dr. David Jimenez
UT San Antonio Health Sciences Center
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
210-567-5625 • FAX [phone]
Adults and Pediatrics
San Antonio , TX 78229-3900

Dr Dong H. Kim
Mischner Neuroscience Associates
6400 Fannin Suite 2800
Huston, TX
713-704-7100

Dr. Rob Parrish
Methodist Hospital
Huston, TX

[naomba]

I've just been diagnosed with Chiari. Hello selmaS is there any chiari specialists in the area of Houston that you know of who has the best reviws; I also thought of not having the surgery, but I read from many others people with chiari advicing to get the surgery. I am still very undecisive because I also found a large number of people reporting getting worse or even needing several surgeries. is there any place to find concrete facts? I will really appreciate all the info you can give me.

Regards
CL

[lasel22]

I have tightness in my legs and if I do too much I will get a cramping feeling and pins and needles.  Also when my symptoms were at their worst my legs felt very weak and shook when going down the stairs.  I have tremors and they increase with an increase in activity.  My balance isn't great anymore but I have never fallen.  My body just doesn't sense the ground properly, the ground feels like it is moving and sometimes my when I move my body I don't feel the movement like I normally should.  I also feel a sensation of rocking sometimes, like I am being hit by waves.  I have had pain in my feet for years and never knew why.  I'm not sure it's related to chiari or not, but I do have foot pain.

I hope this helps answer some of your questions.

[challenger2011]

good morning.  does weakness of the legs, falling from balance issues, tight calves and Charlie horses in calves and feet have anything to do with chiari? thank you for your responses.

[strenght123]

hi i have being told ive chiari malformation after years of shoulder pain chronic neck pain losing life in my hand and pain down my back  doc told me that there was fluid on my spinal cord connecting to brainstems he said he didnt really know much about it that he was he as writing urgent letter to neurosurgen i cant remember anything else of what he said as i didnt understand it could ye please let me know if fluid on spinal cord is dangerous

[kwalker0004]

Best of luck with your surgery. But don't allow yourself to talk yourself out of it. I have several times and now everything is going down hill. Once you do it once you will just keep talking yourself out of it because you will always find a reason to not want to do. I have rescheduled my surgery 3 times now. So it isn't worth it. Best of luck to you again

[MeliRecova89]

Question you said you kept pushing of your surgery and got worst? How quickly was that? My Dr wants me to get the surgery but wanted to try and posh it off to the summer brake I don't work then and can take it easy but am afraid of becoming symptomatic.

[selmaS]

  Hi and welcome to the Chiari forum,

Your symptoms list is very much like those with Chiari.....and I would venture to say you most likely had it since birth....anything can trigger the symptoms to flare and be more noticeable.

Did you have a strut graft with your corpectomy?

Have you ever considered yourself Double jointed? Do you bruise easily? Slow to heal?

Chiari is a congenital condition...and can not be caused by an injection, and many times it is seen on MRI's but not reported as many Drs view it as an incidental finding....get copies of ALL MRI's and reports you have had done so far....

Low lying tonsils, which is acquired Chiari can be due to blunt force trauma or  from a LP drawn too quickly....the symptoms are the same but the big difference is with Chiari it is the Malformation of the skull....while low lying tonsils it is the draw or blunt force trauma that force the cerebral tonsils to herniate instead of the space being too small to contain them.

Those with true Chiari, since we have had it since birth do not recognize our symptoms bcuz we have always had them and consider them "normal" they are not, but they are our "normal".

It is only once the symptoms flare or worsen that we take notice. Chiari symptoms also cycle so we tend to also blame symptoms on over doing it, the flu...or something else....but many times it could have been Chiari but not knowing about it or what the symptoms are we ignore and  do not consider to add it when we are DX'd.....it takes time to connect ALL the dots.

Just know you are not alone.

[miraclemomof2]

I am recently diagnosed type I very symptomatic and not sure what to do. I am a single mom of 2 with no help which is the toughest part. I have pain every day....had a cervical corpectomy with fusion last November and prior to that 14 injections in the back of neck in a 5 week period...could this have caused the chiari...a yr ago mri was fine and now ihave 6 mm protrusion. primary at first thought possible ms. Symptoms include severe headaches, neck pain, memory loss or changes, chronic fatigue, equilibrium and coordination problems, nausea, severe blurred vision, tingling in right foot. weakness in hands just to name some

[selmaS]

  Hi and welcome to the Chiari forum.

IMHO I do not think that Chiari could be detected from an ultra sound for a few reasons...most that use the ultra sound may not be aware of what Chiari is plus they would have to be looking for it.....and Chiari is not that well known yet.

I was also born with it and just found out at age 48....spent yrs and alot of $$ trying to get answers....

Do u know what testing they have done and how her Chiari is affecting her overall health....in addition to the symptoms u mentioned.?

[brooksmommy]

Hello my name is bran die. My two year old daughter suffers from charri type one. I was wondering if this malphornation should have been detected in an ultra sound when I was pregnant I was un aware that my daughter had charri until she was 9 months old. She began to have trouble walking and balancing so I took her to the er and they did an Mr and discovered the problem I am just curious if it could have been seen in an ultra sound I wish I knew she had the problem sooner like before she was born but instead I had to find out 9 months later if anyone can answer my questions I would greatly appreciate it.. thanks - brandie

[selmaS]

  A Name on the list is not an endorsement...it just means a member used that Dr ans was pleased....u should see a few diff Drs and research them...do not rely on the fact they r on a list here or newhere on the internet.

Good luck with the Dr u choose : )

[zil75]

im sorry i did not see ur msg .. thank you so much and iv checked the list and my surgeon is there :) many thanks

[selmaS]

  We do have a list from the Ann Conroy Trust so it is Drs in the UK.,...u may want to look...just see if urs is listed....I am not really sure how they compile that list. But we do have one for those not here in the states.

[zil75]

unfortunately here in England i dont have the choice of seeing different surgeons, not on the NHS, you have to see who you are given and because they say it is a rare thing to have so we dont have many ns that know much about it. so i have to have op with the surgeon iv been given .. as im not a private patient

[selmaS]

  Keep in mind just bcuz a Dr's name is listed on a Chiari list, does not mean they r a true Chiari specialist and I would suggest u see a few to compare them.....

  I will bump the list up, but u can use the search this community feature to locate threads : )

[zil75]

sorry, may i ask where i can find the surgery date list for 2013?

[zil75]

Hey and thank you very much for the welcome that means alot :) all your advice is much appreciated .. its good to have someone to talk to about this as i dont want to worry my family about how i feel .. i also live alone which is not so good at the moment .. my surgery date is week after next Wed 16th Jan all being well obviously .. im guessing its the worry that keeps me awake at night or maybe the chari i dont know .. thats lovely to hear you had good support from anesthetist, something else i worry about .. please may i ask how long your recovery took? my family said they can help for a while but they wont be needed to long will they? i would just like to thank you also about saying that you would post my date on prayer thread that means alot to me :)

[zil75]

thank you very much for your reply .. means alot and i appreciate the honesty .. well my ns is listed on the chari malformation web site so i guess i trust him its just so many things go wrong within the nhs it worries me .. sounds silly i know, but all sorts are going through my head right now.
And maybe then from your msg i need to approach this in a different way and be more positive, as hard as it is. But like you said not having it done i would probably end up in a worse state .. i will keep posting if thats ok with everyone as its nice to have someone to talk to at this nerve racking time .... many thanks

[selmaS]

  Hi and welcome to the Chiari forum.

To be scared is quite normal as Viv mentioned above....I too was scared...but, I also remembered all I went thru to get to that point, and I had a wonderful anesthesiologist that spoke with me b4 and made me feel sooooo much better more relaxed....and that was b4 he started the meds...lol...

As far as how long u  could go....no way to know...some syrinxs grow slowly while others change and grow very rapidly....only ur Dr can tell u, and ur symptoms r another way to look at them...but keep in mind, with a syrinx u may not always feel pain as a syrinx and even just chiari can compress the nerves enuff that u may not feel the pain....so....as Viv mentioned check with a Chiari specialist....

As Viv also said u r not alone...there r many here that have not had surgery yet and a few of us that have....

Post in our surgery date list for 2013 when u have ur date and we will post a prayer thread for u..... <3

[Viva001]

Im sorry for the fear & anxiety you are experiencing.  We've all been there.  I can only speak for myself--I was suffering so much that I was ecstatic about receiving an accurate Dx and looked forward to surgery.  However, I had an experienced Chiari expert.

What might happen if you don't have surgery is not a pleasant list.

Do you know if your NS is a Chiari expert?  If you don't have that luxury, do you have confidence in your NS?

Know that you're not alone; we're here to help.