I found out on Friday that i have chiari i am really hesitant about getting the surgery! I have a 4yr old i am a single parent is there anyway i can go with out getting the surgery? I have already been suffering with the pain and symptoms for 13yrs i am 27 what do i do? What can i do?
I’m very new to this as well. I had my decompression surgery 1 week ago. When I saw the surgeon I asked the question, what will happen if I don’t have surgery? Her answer to me was "you will become permenantly disable and progressively unable to walk. That was what I needed to hear for me. I as well have children and need to be here for them. By no means is my situation the norm. Many Chiari patients don’t need surgery and can get by without it. Make sure the surgeon is giving you the medically necessary answer and not the answer they think you want to hear. This is always an individual decision. It can’t be taken lightly and the pros and cons must be weighed. I am one week out from surgery and doing fairly well. Pain is not that severe but I certainly can’t take care of my kids. My husband and my cousin are taking care of them while I concentrate on myself. I know this was a long winded response but I hope it helps some. Either way you are not alone.
Ok will it ever be cured or am i gonna have it the rest of my life? I am really terrified about this whole situation
Oh yeah and to add i don’t know how bad my situation is like u said i have been dealing with these symptoms i have had for 13yrs since i was 14yrs old
It is very scary, especially when you have responsibilities of taking care of your child, and concern about who will take care of you. Read and learn everything you can on your condition to make an inforned decision. One thing is certain - chiari malformation does not go away or correct itself on its own. Surgery is scary -yes- but it is an the only opportunity that could provide real improvement, or lessen future damage, that I’ve seen so far.
I’m four months post-decopression surgery, and still having balance problems . . . but I’m fighting the good fight and tryng to take every opportunity the medical establishment has provided so far to allow me to live a full life and continue to raise my children.
In the face of fear - you will find your courage!
R u able to ever work again?
I very much intend to return to work. I have a job as a Clinical Nursing Coordinator for a large Internal Medicine office. I am taking 6-8 weeks off for recovery but I’m returning. It is really a mind set, just like Elle 3 said, get as educated as possible and build courage through knowledge. If you think defeated you will be defeated. I saw the diagnosis as a relief and finally a chance to live a normal life after surgery. You are so young and have a wonderful chance at a great recovery. Best of luck to you.
Jen
Brandi, we are glad you are here :). Yes, it’s scary. But you can do this! Take a que from these ladies who wrote to you- they went through it, came out the other side in one piece, and still have a positive outlook! Please research until you know your condition inside and out- this will empower you and also enable you to make the best decisions for your treatment and wether or not to have surgery. Many doctors, including neurosurgeons, have an astoundingly outdated education on Chiari and the conditions that come along with it. You will need to be able to ask the right questions so you can weed out the not-so-good advice and recommendations. Read everything you can about others experiences.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Dysautonomia- Dinet.org
Tethered cord syndrome
Sleep apnea
I am glad you found us,
Jenn
I am glad i found you also like i have already said i don’t know how sever my condition is i was diagnosed on Friday but i havehad my symptoms/problems for years and i am reading up on it and u keep asking why did this happen to me i had the symptoms for yrs but my Dr kept saying it was migraines but my symptoms got worse after i had my daughter 4yrs ago
Im still trying to get a straight answer also is this cureable am i going to have it the rest of my life?
Even with surgery (which is an attempt to remove the blockage of CSF and reduce the herniated brain) some people still live with varying degrees of symptoms. But! there are also people who say they are symptom free after surgery.
Surgery is the only “treatment” for a Chiari. Symptoms can be managed with medication and diet and lifestyle changes, but I have never heard of a Chiari malformation resolving on its own.
Jenn
Has anyone else with chiari’s have to have any of their. Organs (example: appendix gullbladder or however its spelled) removed?
Brandi I’m glad you found this site it has made feel so much better to have someone ro talk to. That understands what you have been through and help you figure out what to expect. I’ve had the same experience as you my symptoms got worst after pregnancy and I luckily had a doctor I work with break it down for me he said to get proper treatment with the wait and a see method and if that didn’t work to think about surgery. The key is to find a dr who knows whats wrong with you.
But it also feels like after my mri my symptoms got worse:(
I think the reason we feel that way is because we have finally found out that we are imagining things. And now we know what are symptoms are and other symptoms we didn’t realise we were having are now known to us. I know this was my situation I had symptoms I didn’t realise were symptoms until I seen them in print and just thought this was a normal way of life because I didn’t know better.
I wish that was the case! my family are the ones noticing im getting worse:( and since my mri it has been bad
There I'd currently no cure for Chiari. Surgery is strictly for management of symptoms. Not to frighten you but many Chiarians undergo more than one decompression. Do lots of research prior to surgery. Get more than 1 opinion. Be sureto research your neurosurgeon.
I had neck surgery after being diagnosed with Chiari and that had given me almost a year of being able to manage better. Sometimes there are other underlying conditions that can be managed and help improve your quality if life, ultimately leaving you able to postpone decompression.
What are your symptoms like? Did they say you have syringiomyleia or syrinx? These are very important questions when considering decompression.
I hope you are coming to terms with this better now that you have a wealth of knowledge in this support group. For me, every bit of education actually helps me to cope.
I don’t know how sever or complex it is yet i was just diagnosed a week ago but i have had my symptoms for yrs i get really dizzy i have bad balance problems the headaches the vision problems and sleep apnea i feel lost Idk what to do
I know how confusing this can be in the beginning. Add if it's not bade enough to be sick but then having totry to deal with this can certainly be overwhelming. The good news is this- you have a diagnosis and are on the right track to getting treatment.
Take a few days to relax, treat yourself to no work if you can and do whatever makes you happy to unwind. Then get back to reality and see a Dr. Who can explain this stuff to you. Did you make an appointment with a Chiari specialist? There is a list of recommended Chiari drs on this site. They will be able to best help you.