Chiari Malformation - I feel scared & alone..
Posted , 13 users are following.
Hello
i thought i'd join this site as i am desperate for help and advice, i know nobody who understands how i'm feeling 
Here is my story:
I am 23 years old and i was diagnosed with Chiari malformation Type 1 about 8 months ago, before the diagnoses i was having panic attacks all day and everyday as i didnt know what the symptoms were and it felt like i was dying, and i also thought i was losing my mind, like literally thought id have to be thrown into a mental hospital and sectioned it got that bad.
My symptoms include:
Terrible vertigo
Numbness
Sleep apnea ( i havent been diagnosed with this yet, i am getting it looked at)
i have not handled the situation well, i just want to feel normal and live a happy & healthy life.
How i have handled the diagnoses has altered my perspective and thinking patterns in a really negative way, it keeps me up at night and i am terrified.
I apparently don't need the surgery.
I just want to know, is there anyone else who feels this makes them so much more afraid to live, yet also afraid to die, it has intensified those anxieties for me
Please please please.. i need to know - can i still live a happy & long life with chiari? i feel like i am going to die and i dont want to i cant take it anymore.
What do you do to improve your life with chiari?
How do you see the positive side of it all?
Next week i am flying to greece with my best friend, i am excited, but also scared, scared because of the pressure on the plane.. will it cause damage to my condition? and also because i dont want to be a burden if i feel tired and dizzy.
I just want happiness.. i feel like i wont have that with any of this.
i am losing it :'(
2 years ago i had lost my boyfriend due to an overdose, these past few years have been awful for me, the diagnoses only made it all worse.
thankyou.
0 likes, 25 replies
helen11122 livvy_smiles
Posted
livvy_smiles helen11122
Posted
melanieheather livvy_smiles
Posted
Welcome to our own little world that is bigger then we thought.. to be honest the surgery isn't that great anyway but the depression and anxiety is a big pain in the ass try to get help for that you can fall in a black hole which sounds like u are and won't even know it but always try to keep one great memory in your head to help u when u feel the anxiety and depression coming on and I fly all the time no worries
sharla1972 livvy_smiles
Posted
I was diagnosis chiari malformation type 1 and spine on my spine. Last year I had tissue removed from my breastfeeding and got vertigo it was awful. Had to have therapy and I was out of work for three months. Then in January of this year I started having headaches and double vision and numbness. When I got mad or even excited it was a pulling in the back of my head it was very scary.
So I went to see the neurologist on 4/25/16 and she immediately Sent me for an mri and that's when I found out that had this condition.
My doctor also told that is a slow progression but was much worse due to the fluid builtin up so I had to have surgery
It is one of surgerys that it's takes time to heal, I now have to take physical therapy because my legs are a little week. I'm ready to get past the muscle spasms and it has been 34 days. My doctor advised me that it could take 6 months for me to completely heal due to the severity of my condition. But I can tell that most of the symtons have gone away.
melanieheather sharla1972
Posted
I'm over a year in still have muscle spasms and I had therapy but good luck
Brummieman livvy_smiles
Posted
Hi Livvy .. I'm uk based and I found out I have a this a couple of years ago now . When I first found out I felt the same as you .. But I had time to relax about it a bit more and realise look I have this condition and that's the end of of it .. All I'm saying things get better I'm seeing Birmingham doctor at queen Elizabeth hospital .. Lately my attitude is it could of been a lot worst lol ..
Linleel livvy_smiles
Posted
I'm 57 and I just got diagnosed with Chiari last November, 2015. So you can live a long life (thus far) and not even realize you have a rare congenital disorder.
The thing you have to remember about Chiari is that the brain is being squished. There is no guarantee that having the surgery will do away with all symptoms as there may be some brain damage due to the pressure of the cerebellum against the brain stem. (I am not a doctor, that is just my opinion and common sense based on reading everything about Chiari).
I just had the decompression surgery June 2. So far, am doing well and none of previous symptoms have come back.
If the doctor you are dealing with says you don't need surgery, go to a different doctor. I had two doctors tell me I didn't need surgery. I got a cisternogram (a video of CSF flow) and even though I didn't have the coughing headaches, the video showed CSF flow was blocked on one side. He recommended decompression surgery. I was sooooo happy to finally get a diagnosis that I believed was true!!
Get copies of your MRI's and any other consult notes and reports. That way you will be better informed. My first MRI said I had Chiari with tonsillar herniation of 7 cm; the second said 4 cm. The cisternogram said 8 cm. But it also said one tonsil was 4-5 cm and the other was 8 cm. I didn't even know there were two tonsils.
sharla1972 Linleel
Posted
So glad you went to another doctor. As I look back I have had the symptoms for at least five years. I have to go to my doctor five times before she finally gave me a referral, an this was April of this year. I was so bad that I had to have surgery on mat 20th. So didn't really have time to process what was going on because my symptoms had gotten worse so my only option was surgery. I'm healing which is taking some time. I'm better than before still some symptoms except not as bad. Hope all is well with you. God bless you
Linleel sharla1972
Posted
Recovery seems to take a wee bit longer than the doctor originally estimated. So my husband is eager to see me "ALL BETTER." UGH!! I'm finding people who are super healthy and super in shape and thin to be REALLY ANNOYING!! I'm just hoping to get well enough to start riding my bike again. I've ridden once a few weeks ago with my dog in the front and didn't wreck. But got nervous. I don't have the quick reflexes yet.
My philosophy on Chiari is:
a. Chiari can reoccur depending on what your first surgery did.
b. It doesn't go away, the surgery just makes the space larger. Depends on your symptoms.
c. Most doctors don't know much about Chiari and don't have many patients who have Chiari.
d. The best thing to do is Research and Read up on the condition so you know as much as your doctor. Get the hospital to give you copies of your MRI's and other test results. I can get all my test results online and then if I don't know what they are saying- look it up.
e. It's good to be assertive with doctors, especially residents!!)
f. doctors don't return phone calls, assistants are rude and unhelpful so PESTER THE HECK out of them!!!
g. Pester, pester, pester until they call you back. My doctor's assistant never called me back- I CALLED HER!! I pushed to get the appt. to have the MRI Celle done. I called repeatedly to find out what the doctor had to say about the results. I pushed to get the second consult. I pushed to get the surgery scheduled asap.
Good luck!
kebarnett88 livvy_smiles
Posted
Hi,
I know 3 people with Chiari. My mom, my co-worker, and a friend's daughter. My co-worker had the surgery in 2014. It alleviated the majority of her symptoms, has allowed her to go back to her regular life, and she seems to be doing very well. My co-workers daughter was 17 when she had the surgery in 2013. In 2014 she ran a 5K. My mom is 50 and has not had the surgery. She does not have enough symptoms to warrant it at this time. Sometimes she has episodes and they're scary, but she doesn't want to have the surgery while she's able to continue her life as usual.
If it is getting to a point where you are no longer able to enjoy your life and do normal things, you need to consider surgery. You're young. You'll never recover faster and more easily than you will now.