Stressed, scared, dissapointed

General
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Hello my name it’s Laura I have 19 years old. A few days ago(3 I think) I was diagnosed with chiari tip 1 . My chiari it’s 5 mm and it doesn’t came alone it’s came with a beautiful siringomielie a liquid how it’s in on my spinal . My neurologist want to do the surgery very fast ( this month on 29) i’m a little bit scared. I want to know if it’s everybody here to do this surgery and tell me what it’s going on with this. I want to tell I’m from Romania and the medical system in my country is very bad. I want some opinions about this. Please help me with this

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Hi, Wait!..There is no need to rush into surgery. I know it’s really scary at first. Take your time and do research…you have time!!! I am 54 and have not had surgery, and I have had this my WHOLE life. There is a big risk with any surgery. If you are able to function without pain and dizziness, you should wait. You may have to slow down, take, do less and rest in order to feel better and relieve pain. I do not work, try not to bend over, don’t strain or lift heavy items, no more jerky rides etc. If you have to work and it’s very physical you may at some point need surgery. Make sure you find the best Chiari Surgeon. Get several opinions if you can. Tina from WI USA

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I’m 17 years old and I just had surgery for both my chiari 1 malformation and craniocervical instability about a month ago. I’m not going to lie to you, I was absolutely terrified. Going through chiari surgery is such a scary scary thing, but the benefits are truly worth it. I am now living with no pain whatsoever 6 weeks out of surgery. I can drive again, work again, go back to school, and do everything I did before I even began getting sick. The surgery is tough to get through but I want you to know that it does get better. You are very strong and can face anything, always remember that!

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Hi Laura. I know this all can be quite scary to find out. When I got my diagnosis I was told over the phone by my family physicians nurse. When I asked what Chiari was she had no clue and told me to look it up. I was terrified! I was into a neurosurgeon a month later having surgery. I was at a 5mm too. Make sure you do your research when choosing a surgeon. Be picky! Ask questions! Ask how many surgeries he has performed ect. I am now two years after surgery and sm doing GREAT! It takes a long time to heal but it was all worth it! Hope this helps you some.

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Hello my name is Erica I am 28 years old. I was diagnosed December 19th with Chiari malformation type 1 a 12 mm I’ve been told need surgery to relieve the pain the pressure the vertigo memory loss but I am terrified I want to get back to normal but right now I can’t take work off can’t get the surgery and even if I could I can’t because I have to provide for my kids I am terrified of what’s wrong with me and I’m losing days I went to work the other day thinking I was supposed to be there at 6 a.m. and it was my off day and these headaches are getting worse any advice of what I should do

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Start asking for help would be a good place to start. That is what you are doing on this site, but real people where you are - friends, family, religious sources, aid centers of a variety of sorts are going to make the difference in your real life. Even more distant friends of friends have knowledge that you need to help navigate the medical world, financial world, employment world, childcare world…

You know your situation - poor as it may be, there are always doors that can open. Chiari is not something that sorts itself out on its own. Asking for help is not easy but nor is it easy to be looking at poor health, little money, family to support and not seeing any way out through the fear and uncertainty. It is not an easy road to travel but I wish you clear vision and a strong mind to start the process of finding answers.

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I can assure you, if your Chari condition is bad enough to cause Syringomyelia, than your doctor is surely correct in wanting to do surgery. I have Syringomyelia too. It is fortunate for you that medical technology has allowed you to find it at age 19. My issues were not addressed until I was 40.
The Chiari likely caused the Syringomyelia. Because mine wasn’t diagnosed until later on in life, I have various buldging disks, disk degeneration, bone spurs and permanent damage to my spine. If is fortunate for you that you have been diagnosed early.
Also, I have scoliosis that bends to the left. This affects my breathing at times.
So, in good faith, it sounds like your doctor is on the right track :).

  • If I were you…however, I would research the different types of patches used after surgery in the brain area. Infection is a rather large dynamic several people face after surgery. It isn’t inevitable, just high risk.

  • You will need a mature person (probably not a child as they might rip bandages off) to frequently change your bandage area too. Heat, bacteria and moisture build up and that is what causes infections.
    My hospital sent me home with special shampoos. Shampoos from the store have much alcohol and will dry out the wound are where stitches are, causing bleeding, itching and plethora of problems. The shampoo doesn’t have much of smell, or at best, no smell.
    See what your doctor can recommend with that. Research different patches your doctor will use, and feel free to ask him what kind of patch he will use to hold your skull together after they go in. It is after all, your body.

  • Also, try not to get hooked on harsh narcotics after the surgery. Narcotics will just add to your depression, weight gain, and misery and will surely cause addiction (I am sure you are aware your current diagnoses have given you enough problems) Not sure if easy narcotic dispension is a problem in Romania.

  • Also , drink water like crazy…flush, flush, flush your system from the drugs and anesthia from surgery.
    Everyone’s condition is different. It is encouraging to see younger people get diagnosed.

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