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Chiari Malformation Community
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620923 tn?1452915648

List your surgery date 2017 ~~~~~

Hi, please let us know when you are having surgery so we can post a Prayer thread for you.....and it also gives a place for updates on your condition and progress.

Sending good wishes to all who have a surgery planned.

PS - it does not have to be just Chiari surgery...any surgery for a member here is welcomed.
19 Responses
620923 tn?1452915648
COMMUNITY LEADER

  BUMP
620923 tn?1452915648
COMMUNITY LEADER

  BUMPING up for dates in March, April and May surgeries
317787 tn?1473358451
Selma, I just saw this, I wanted to thank you for posting this. I think it is very helpful, Dee
1 Comments
Thanks Dee, but lately no one tends to use this thread ...but I will continue to offer it.
317787 tn?1473358451
I'm sorry, if I had seen this when I was having surgery I would have used it.
Perhaps we could pray for Barb? She is having some difficult.
Thanks again, D
3 Comments
Will do....Prayers out to Barb <3
When was your surgery Dee?
So sorry, it was Aug 2015, before that Christmas Eve 2013. Struggling to recover.
Avatar universal
I found out when I was 15 that I had a CM.Dr told me I was fine nothing to worry about always had symptoms such as headaches,dizzy spells,balance problems and breathing problems which it was so bad it was thought of being seziers and pain in my neck and back. Years later had car accident symptom was worse which was when I found out about CM. Didn&#39;t have insurance to go to another Dr I took the Dr for his word.had 3 beautiful daughters with IV Meds and they were all born natural finally got insurance been to alot of Dr&#39;s I tell them i have CM and show them my report and they don&#39;t believe me ,and treat me like I&#39;m crazy just because the Dr didn&#39;t ever hear ofCM which I have been researching after losing complete sight after dropping my kids off at school. That was scary I went to a neru Dr who did a MIR which show CM but the report say I had the surgery which I have not.I got a Dr appointment with a ns but before my app.found out in pregnant again the ns wants to do the surgery right after I have the baby. I&#39;m 2 days away from 15 weeks pregnant. They want me to have another MIR immediately because ns says I have the worse out of 3 he had ever seen and worried that it has gotten worse in the 2 years since the MIR with the wrong report lucky I had the dics tie show him.ob is telling me I need a c-section which in scared of because I had a dnc before and the general Meds didn&#39;t work right I woke up in the middle of surgery I also heal very slowly so worried about recovering. I also get burning feeling in hands a and feet.numbness throughout me body but its a painful numbness.lose control of me body.contration is bad along with memory chronic pain. And advice on my problems would be gratefully appreciated thank you
1 Comments
Hi and welcome to the Chiari forum.
There are many Drs that do not understand Chiari and will not accept anything we as patients have to say about it....you will want to find a true Chiari specialist to get help.
The meds not working could indicate you could possibly have  Ehlers-Danlos which does affect local anesthetics and some others too. And EDS causes us to heal slower . What area do you live in?
Avatar universal
Also hardly sleep
1 Comments
A C- section is the safest way to go if this is best for your OBGYN....but make sure they know ALL about Chiari and the related conditions as well as possible issues you could have as a result....LP's should be avoided.....
I was able to have natural childbirth BUT this was long before I was DX'd with Chiari.
317787 tn?1473358451
MindyMoney, I am so sorry to hear of your problems, I guess the first thing is to get through your labor and delivery. Why are they saying you have to have a C section? Is it because your condition could get worse?
Thinking of you Mindy, praying for a good outcome for you
Dee
1 Comments
Thank you the ob Dr doesn't really want to see me because of the CM I live in near Huntsville TX the ob didn't answer why I need c-section but have a appointment next week try to ask again and try to get him to understand. I have 2 ob doctors and my NS they all want to put me on vicoden but they all want one of the other Dr to actually give it to me the pain management refused to see me even tho the Dr all approve of meds. I feel like a ball being bounced here and there between the Dr
317787 tn?1473358451
Dear Selma, thank you for bringing attention to this. Is it classified as a disease? I had never heard of it before I happened to see one of your posts.
I tried to look it up just to familiarize myself and see many different types. I'm guessing there are more than this. It does say everyone is different and it's difficult to diagnosis.
What is the best type of doctor to see?
1 Comments
Dee Chiari is a malformation of the skull...this results in the area that holds the cerebellum being too small and that forces it out of the foraman magmum onto the spinal cord and or brain stem....symptoms vary but most have headaches with strain...laughing, coughing, BM's....lifting, bending,...many things can trigger the symptoms to flare...we also have heart palps, blurry vision and other vision disturbances, balance issues, brain fog, and the fog leads to loss of words, short term memory issues....the list goes on.

The best Dr to see is a true Chiari specialist ...they are few and far in between.....

There are several types of Chiari...I 2 and II...Chiari never comes alone...there are related conditions and  even non related conditions...Syringomyelia, Ehlers-Danlos, Sleep apnea,ICP, POTS, Hashimoto's Thyroiditis,CCI....these are related....non related  conditions Lymes, Lupus, and MS.

Chiari is a congenital condition so many have had symptoms their whole life but may not be aware of the symptoms as they have always had them and consider them "normal" ways to feel....not until symptoms worsen do we connect the dots and symptoms together.
Avatar universal
The NS sending me for a MIR next week because he said that my last MIR is the worse out if 3 that he ever see so he wants a new one worried that my cm has gotten worse in the last 2 years
Avatar universal
Thank you selma and Dee for your help my NS when I researched him said that he is a specialist with cm
1 Comments
Could you PM me the Drs name?
Avatar universal
i will be having surgery June 14, 2017
2 Comments
for chiari
Thanks for letting us know, a Prayer thread will be posted for you.....wishing you all the best. <3
620923 tn?1452915648
COMMUNITY LEADER
bumping up for June & July surgery dates
Avatar universal
Surgery is June 15th.. So nervous
1 Comments
Try and relax...I know it is not easy..but try.
620923 tn?1452915648
COMMUNITY LEADER
Bumping up
1 Comments
bumping up
20518617 tn?1499814261
I was recently diagnosed in April with CM with at least a 5mm herniation, luckily (for me) my doctor had to have brain surgery for something different, so she referred me to her NS. My appointment with him is next month on the 11th. I am 26 and after looking over an mri from 8 years ago (and pre-2 children) I noticed lower lying cerebellar tonsils were noted, so it has herniated more since then. I've been having worsening symptoms for about a year, tho the headaches have been around for years and years. I was also a competitive gymnast growing up so I have many other physicals problems like arthritis in all my joints and such, and was in a car wreck (t-boned my side of car door area, reason for first mri). These threads from this site has been my go-to on almost everything, it has helped knowing others are feeling the same way. Its so frustrating since others don't understand, and you go from thinking you're normal to being told you'll need brain surgery... but also realize your 'normal' isn't normal. My NS is in the top 1% of NS in America so I am fully confident in him and feel extremely blessed that I got into him and so quickly. My symptoms are getting worse, but brain surgery seems hard so grasp. I had originally made up my mind that I wouldn't do it until I can no longer deal at all with the symptoms and pain, but it seems as tho I don't think I'll be able to get around it. I hate that it takes an illness for these type of post, but I'm so glad all of you are so helpful in terms of symptoms and support.
5 Comments
Hi and welcome to the Chiari forum.
So you do not have a surgery planned just yet.....I do hope your NS is a top Chiari specialist as it is different then just a top NS....just as a mechanic for a car is not the same as a mechanic that works on foreign transmissions.....even a transmission mechanic is different from one that works solely on foreign transmissions.....
AND it is very important that they rule out ALL related conditions before considering surgery....

May I ask, what testing have you had so far outside of the MRI?
Hi again and thank you for your quick response! Sorry it has taken a bit to respond, we've had a lot of family medical problems we've had to travel 40+ (4 10 hr drives straight within less than a week of being home. You know how much FUN that has been, lol. I've talked about you to my family a bunch because of all that I read on here and you always comment..your support is awesome so let me start with thanks to you!
Yes, you're so right with the specialist vs non. I've actually talked to so many people and they say well, being a NS I'm sure they know what they are doing... well, that's not ever the case and definitely not with CM. But he is and I'm super blessed that my PCP even in my home town (a small town in Arkansas) is familiar with it and has had a few previous patients so she is absolutely amazing with it all and has a good general idea so at least she knows I'm not faking or being a hypochondriac. Having support of your doctor makes it such a better journey. Anyway, I have not had any other testing yet, and my family and I are  awaiting the NS apt to know so much more than we do now. My PCP and I have at least on some things eliminated issues thru medicine but that's not a for sure, just know now it's now probably the chiari. Once again, him ordering the other testing will know more. I know my doctor wants nerve testing done and of course a cine mri. I haven't told many people until we do know more after the 11th. But I'm definitely taking this and looking at what I change now to give myself and family the best life I can for me and them, since I'm now so limited. Thankfully I don't work outside a mother and wife. My husband and I have been married for almost 10 and he's amazing thru this. We had our kids young to be active with them and now I can do very little, but I am determined to make up for that and let them know I do hate not being there beside them in fun adventures. But this is what God has dealt me and I will not let it have me. I've been in bad physical health, tho I've seemed healthy and fit, for a while and I'm ready for this battle now<-- now that I know something is wrong and my normal isn't normal lol, and I know what to do to function optimally with this. I've read I think all that the internet possibly has on this and definitely want to advocate for CM and help bring awareness.
You have a very good outlook on this as a whole so you will do fine.....but remember being a Mom and housewife is harder work and more demanding and takes more time then a regular job....so do not push to do too much post op as it can cause set backs....listen to your body before and after surgery.
You're telling me, lol!
Thank you! It is a very new lifestyle for sure and learning my bodies limits, that they are out of my control, and that I HAVE to listen to those limits have become an important thing. People laugh now because I have to take daily naps (I homeschool our kids and they didn't even take naps), but I've realized that if I don't I definitely feel it days later. And realizing that's okay...it's okay to take time and baby myself more now. But once again, having an amazing support system with my husband and mom, I just couldn't do it without them. Not this easily<- if that's a word in our  dictionary lol. Having this site to go to with everything has just helped so much to know there's others going thru the same thing. I know you've been thru a lot with this, what does the testing for other related common conditions consist of? A lot of this and that or specific test? I have not looked into anything with related conditions other than what they are...not much about how they are discovered. I know I write a lot so feel free to message me if you'd like. I hope maybe being in depth a little will help someone reading eventually ;)
Goodness you home school too....wow that is a huge workload for a Chiarian.

Testing consists of MRI's of different areas...we need a brain MRI a cervical Mri, a thoracic and Lumbar spine MRI as well as a CINE MRI.....then there is neurological testing and  the Beighton scale/score which helps determine if more testing is need to rule out types of EDS.....the MRI's help with Syringomyelia(syrinx) and bulging disks, scoliosis, retroflexed odontoid, CCI, BI, TCS and a few others I am sure I am missing....and with sleep issues it is best to have testing done to check your blood oxygen levels to see if you possibly need a sleep study to rule out sleep apnea which is common for many with Chairi.....

Keep in mind many of us post op are doing better and do not have as many limitations as we did pre op or immediately following surgery....in fact it depends on the individual if or how long post op they may have limits....but as I said before rushing to do too much can cause set backs and it could take longer to get to that point....and so will what ever other conditions you have....they play a role in how your recover as well.So it is VERY IMPORTANT to have them ALL ruled out before surgery is considered.

What tests will depend on you and your symptoms.....I had a EMG as well as urodynamics testing (sp)....this was due to leg issues and I also had bladder issues.....

I will answer as much as I can.....
Avatar universal
Hello, My surgery is set for July 26, 2017... I would love every prayer you all can send up. As with most everyone that have faced their decompression surgery, my nerves are getting the best of me. Thanks, and God Bless!
3 Comments
Hi and welcome to the Chiari forum.
We will be glad to post a Prayer Thread for you.....I know how you feel.....I had the surgery in May of '09.....and I am amazed how fast time has past already.....but I am so glad I had the surgery and am doing well.
Sending lots of positive vibes and prayers
One week until your surgery! Praying for God's guidance and wisdom for the doctors and a speedy recovery for you! I hope you feel much relief afterwards, I will continue you in my prayers, you've got this!:
Avatar universal
My surgery is scheduled for August 21st. I'm nervous especially since it's my first surgery ever and I'm asthmatic so I'm also concerned about that.
1 Comments
Hi! I'm new here so idk if you are or not, and as I haven't had surgery yet I can't give much support but I will definitely have you in my prayers thru your surgery journey.
620923 tn?1452915648
COMMUNITY LEADER
To Mol30- Welcome to the Chiari forum.

We will gladly post a prayer thread for you.....have you talked to your Dr as to what all will take place during surgery? and After? It may help with things like your asthma....typically you are in ICU and on oxygen.....and being an asthmatic I am sure your Dr is planning on doing that...I had several surgeries before my Chiari PFD....and I was still nervous so that is normal.....but do get answers to some  of the  things that concern you as it will help you relax a little more about it all.
If there is anything else we can help with please let us know.
Avatar universal
Chiari decompression August 15 at Emory in Atlanta! This forum makes me feel better and more nervous at the same time. There are so many different experiences.
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