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.

I will go from the bottom of ur post and work to the beginning....

Childbirth and Chiari.....u said u want more, ...Chiari is congenital which means u had children with chiari and were not aware of it while having this condition...now that u know, u will want to make sure that ur OBGYN and NS work together, if it is b4 or post op should  u decide to have surgery.

The shadow may be the beginning of a syrinx forming, which u do not want, and can also indicate u  have a CSF obstruction, get a CINE MRI to find out what is going on and to see if this is a syrinx.

U will want to research Drs to locate chiari specialists.

We are all diff as to how we r affected by this condition and how fast or slow it progresses, what we do can also affect progression as well.

If u r developing a syrinx or have one already they can create compression and impinge the nerves, the longer  that is left untreated or to compress the nerves u can have perm nerve damage.

This is y it is so important to have all the testing done...MRI's of the thoracic and lumbar spine in addition to the brain and cervical spine MRI's, and the CINE MRI....check the CSF flow, check for disk issues, syrinx's, tethered cord, ICP. POTS and ehlers-danlos, sleep apnea....

But finding the right Dr is key.

We r here to help .

Know u r not alone : )

[kellylouise1983]

Thank you so much I am sorry to sound so stupid but what does a syrinx mean and a CSF obstruction? Thank you so much for your quick response

Kelly :) xoxo

[selmaS]

  Hi, no worries, ask questions so u know .....

CSF is the cerebral spinal fluid which all the signals for how we do everything r transmitted from the brain to the nerve endings.... the cerebral tonsils when they herniate can obstruct or block the flow of this fluid, when that happens it is like flipping the light switch off, we can collapse and fall as the signals to stand etc...r not getting thru.....the switch gets flipped back on almost immediately ...this fall is referred to a drop attack, but to others it can appear the person passed out, however, as the switch is flipped back on we r aware we r falling, but can not react, so it is not the same as passing out, as we also do not have ne warning.

A syrinx is a cyst like cavity that fills with CSF when there is an obstruction, this syrinx , syringomyelia can grow slowly or very rapidly and there is no way to know which will happen. As one grows it can put pressure on the nerves causing numbness, tingling, pain all sorts of symptoms, and it can also put pressure on the brain stem.
Many times when surgery is suggested a syrinx  is already formed or there is a risk of one forming and so surgery is done to help reduce that risk or help reduce the syrinx already there.  

Surgery is to slow progression and restore CSF flow.

I hope this helps answer ur question.

[LeagueCityREALTOR]

There are knowledgeable persons on this site about Chiari. I have tethered cord, which can be a factor in Chiari, and read this info from the Wisconsin Chiari Center, "We have to prioritize the conditions that we diagnose from the most severe to the least severe. In this manner we can select that treatment that is likely to have the greatest benefit for the patient. Each of these conditions is diagnosed by MRI imaging. Newer imaging techniques, some developed by Dr. Heffez and his radiology colleagues, have improved our ability to recognize brain stem compression and spinal cord compression." I found their site well-written and easy to navigate.   http://www.wichiaricenter.org/oth/Page.asp?PageID=OTH000005
              

[kellylouise1983]

Thank you so so much for your responses it has really helped me think things through a little clearer I am in a much better place this week emotionally than I was last week. I have decided to wait until the doctors report arrived and then make my decision then thank you so so much Kelly xoxo

[MandyJo07]

I too have two small little ones, so I completely understand how hard it is to cope with Chiari symptoms and trying to be a good momma. I just wanted to add that I had surgery before I gave birth to both my babies and was told it was ok to deliver naturally and since then my symptoms have returned. I would opt for a c-section when and if you have more kids.

[MeliRecova89]

You says your symptoms returned after you had babies naturally? Is there anything they can do for you? I would like to have more siblings for my kids and am afraid to have a c-section because I knew they limit you to how many you can have. I would hate to have 3 more and be dieing for a 4th and they say no because it's too risky.

[Bunny8228]

I have chiari and found out I was pregnant around the same time they found my ACM. I opted for a c-section and they even put me to sleep to avoid spinal cord issues. I would HIGHLY recommend a c-section. As happy (overwhelmingly happy) as I am with my little one and my 8 year old girl, I must be honest that personally, my symptoms got even worse after having baby. It is hard to keep up with a newborn, and EVEN HARDER with Chiari. This is my experience and opinion. I am lagging even as I type. Two months post op and I must say a csection with chiari issues was not fun. I hope this doesn't happen to everyone and I wish the best to every single person struggling with this condition.

Be Well!!

Chelsey

[kellylouise1983]

Thank you so much it is scary are they recommending you hvae surgery again if they have returned and how did you find the recovery afterwards? Thank you for responding Kelly :) x

[MandyJo07]

I am currently trying to find out what my options are, another surgery may be needed. Everyone is different, I know that after my surgery I felt great. Rarely got a headache and no other symptoms. My first surgery I was 15 and healed quickly, my 2 nd surgery I was 22 and I was back to work in 3 weeks. There are a lot of people that only need one surgery and there are some that need more. I'm actually currently in the hospital, experiencing symptoms I've never had before, the NS are trying to figure out if it's chiari or something else.

[MeliRecova89]

But why did you get the second surgery?  Did you tonsils herniate down more?  Did symptoms come back?  Note I'm nervous. How have you been feeling?

[kellylouise1983]

My thoughts are with you I hope they give you some good answers thinking of you xxxx

[zil75]

im having to have my chari malformation operated on week after next at Southampton hospital .. i have a large syrinx too and csf flow is blocked .. i have many symptoms but also i know the op is risky, so iv now found myself trying to talk myself out of it as im very scared to go through with it .. but i also know what will happen if i  dont .. how long would i have if i left it? .. its also fast growing .. hope someone can help me .. thank you .. liz

[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.

[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

[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

[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]

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

[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]

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]

  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]

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]

  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 : )

[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]

  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.?

[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,

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.