Just diagnosed.. Don't know what to expect. Help!

I was just recently diagnosed with Chiari Malformation type 1 and I'm not sure what to expect! I'm meeting with a neurosurgeon this week because my doctor says I need surgery.. but I'm scared! Any advice? About surgery, or anything?! I'm a freshman in college, and freaking out.

Also, does anyone else get these symptoms; sharp pain in my shoulder/back if I've been sitting up for very long, and sharp pains in my neck and ears. I don't know if thats Chiari related or not.. haven't mentioned it to my doctor. Help! I'm new to this and scared out of my mind.

Don’t be scared. Relax. Take a few deep breaths and think calming thoughts. Don’t worry too much about surgery until a neurosurgeon who does chiari surgeries on a daily basis says you need it. There are some people in this group that have been told surgery is their best option but they are able to manage symptoms with medications and live a fairly normal life.

I had the surgery because I was at the end of my rope and it was my best option. Surgery went well and I knew as soon as I woke up from the anesthetic that I was better. Surgery isn’t a cure it is just a treatment and everyone has different results but having surgery is ultimately your choice. If you feel that you can manage without surgery than don’t let anyone talk you into it. Do what you think/feel is best for you.

Ask the neurosurgeon if they specialize in chiari and how many surgeries/patients of chiari they have/have performed. It is always a good idea to write down a list of questions/concerns you have and bring it with you to your appointment. If you don’t feel comfortable with the doctor you have, don’t be afraid to get a second or third opinion or to try and find a surgeon/doctor you are comfortable with.

I’m having surgery friday will definitely let u know and help anyway I can

Take a deep breath!! A neurosurgeon, if familiar with Chiari and the treatment options, will talk to you and discuss your options. Basically it will be a "can I live with this" or "I need it gone now!" I had the surgery 6 weeks ago and I've gone back to work full time with very little lingering effects. Of course we all are different and there are different approaches. I was referred to a neurosurgeon just for consultation because the neurologist didn't really treat Chiari.

I don't really have sharp pain in neck and shoulder but rather my forehead area. This was caused, for me, by a block in spinal fluid. I met with my neurosurgeon and we discussed the pros and cons (my hubby was there too.) For me, my symptoms had spread to mimicking MS with loss of fine motor skills, memory loss, severely decreased balance, loss of tone, choking/swallowing difficulties, etc. We discussed what MY life would be like in 10 years with and without it.

There is no "cure" for Chiari. The surgery is a treatment for things Chiari has caused (like the blocked flow of CSF fluid.) Also, from what I have read, it's often times not a one-time treatment. As for the surgery, in my case, it was a "quality of life" surgery than 100% necessary. He estimated that for me, my symptoms, herniation, and progression that within 10 years I would be unable to work, drive and would likely have little if any motor skills with my hands.

Here's the GOOD part of surgery. Please remember that this was MY experience. We all are different, recover differently, and react differently---I just want you to see some hope. It was a 4 1/2 hour surgery. They offered meds to help me calm while waiting (this wasn't good because I waited forever due to an emergency stealing my OR.) The staff were friendly, helpful and so nice. I was wheeled to OR, the anesthesiologist put the mask on me and told me three jokes and I fell asleep. I woke up thirsty. But not in pain. I had a 3 day hospital stay where they kept me VERY comfortable with meds and pillows, blankets, food, drinks, etc. After being sent home, I got oral pain meds which kept me comfortable. The incision for me was about 4 inches, but my hair covers it completely. It was healed and stitches out after 2 weeks. I have regained 80% of my range.

THE BEST PART!? IN THE SIX WEEKS SINCE SURGERY, I HAVEN'T HAD ONE HEADACHE OR SHARP PAIN IN MY HEAD. NOT ONE! I consider it a success and if it only lasts 10 years, it will be well worth it!!

If you can live with the symptoms and things then live with them by all means! Surgery should be a last resort when you can't take it any longer. There are great success stories and there are some not-so-great ones. There is always risk with surgery, so it has to be worth it to you. If you don't like the neurosurgeon they referred you to---get a different one! Find one that you like and is helpful and willing to help you through the process.

And DEFINITELY hang around here! :D

Tamara, There is an “understanding Chiari” tab at the top of the page with a lot of helpful info. My advice is to have a true Chiari specialist look at you and your imaging, not all brain surgeons are up to date with our issues. There are other conditions that tend to show up alongside Chiari and they may change the way you need to be treated.

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. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.

Dysautonomia- Dinet.org

Tethered cord syndrome

Sleep apnea

I am glad you found us,
Jenn