Specifics on possible types of surgery

good to see your update, but frankly shocked at what your professor had to say!

my headaches began as valsalva headaches, then as the years went by my symptoms became unbearable and horrendous. Eventually, I was left with a nasty headache almost all of the time! So, as a Chiari patient that has now had the op and NO longer has these headaches (which all neurologist said were stress and NOT Chiari) have now been proven to be wrong, as they were very much Chiari related and from the pressure at the base of my skull causing a whole host of crazy symptoms!

I agree with Clarey1, find a Chiari specialist (probably one that doesn't have his/her own TV show)

What does concern me the most for you is your first post. You mention you have been diagnosed with Syringomyelia as well, from what experience I have (not a doctor) but if you have Chiari with Syringomyelia it is a very good idea to have the decompression surgery. Not to worry you, but you really need to see someone to discuss your options, a fluid filled cyst in the spinal cord is not something to be ignored. (Something my NS said to me, I did not have Syringomyelia, but was told I could develop a syrinx if my Chiari was left untreated as my symptoms had gotten so much worse over the years)

Also, Clarey1 is right,  the size of herniation is irrelevant, it has more to do with the shape of your skull and neck and you as an individual. My Chiari was 9mm, not massive but the shape of my skull couldn't hold my wonderfully big brain 😃 

Well, I saw another neurosurgeon and feel better about things now. He was very good and made much more time for me than the first one. He explained that for him, my headaches are absolutely, definitely caused by the Chiari malformation. Especially since an MRI of my head showed nothing unusual.

In his view, a 'small' malformation can produce 'small' symptoms – by which he didn't mean to belittle my headaches, just that people have far worse symptoms than I do. I don't have balanace problems, vertigo, tingling limbs, and so on.

He gave me a great, detailed description of the surgery, explaining that he would recommend it but that it's not urgent in my case unless I feel I can't cope with the headaches any more. This is pretty much the case, as I can't go more than a couple of days without feeling like my brain is being pulled out from the inside and it's starting to ruin my life. The pain often reaches my face, too, which he explained as the movement of the lower part of the brain pulling on nerves that run through the head into the cheeks and nose. I also feel nauseous a lot.

As regards recovery time, he estimated at least a month, but stressed that everyone is different so it could be longer. 

So, it's up to me. It's tricky, as my partner would have two of us to look after (we have a small child) whilst working full-time, and we have no family anywhere near to help. But I can't go on like this much longer so at some point soon I'll have to just go for it.

I have further MRIs scheduled for the summer to monitor the syringomyelia and Chiari. As the specialist explained, if the cyst has grown, then surgery is no longer optional. I've decided to struggle on until then and see where I'm at.

One last thing – I also have a constant feeling of pressure deep in my ears, along with a throbbing/humming noise that's there pretty much all the time. The specialist seemed to think this was unrelated to the Chiari, but I'm not sure. Does anyone else have this?

I'm new to this, and glad I found other people who understand what I'm going through.

I was diagnosed last December with a Syrinx (C2-T10) in length and Syringomyelia. I left the appointment not really having any of my questions answered and told I'd be referred to a Nurologist. If my symptoms worsened to go to hospital. (I had numbness in my right hand, arm, toes and abdomen and front rib area as well as severe pain when touching my skin, wearing clothes became a nightmare!!!).

I ended up in casualty in Jan 2016, and was admitted. I had further scans done, to then be told I had Chiari 1 Malformation (although my Chiari was probably not the cause of my syrinx due to size difference). I was given options of surgery, or wait and see, I said without any doubt, "when can we do the surgery". Faced with the pain I was in and the future of symptoms getting worse, I felt it was as a no brainer!

I had my surgery Foramun magnum decompression done on 18th Jan. Left hospital after 3 weeks.

I won't lie I was out for 4 days and when I came round my head hurt like I can't even describe. But slowly the headaches eased off, I noticed after day 7 of surgery that I started to get feeling back in my right arm and had burning sensations in my finger tips. Surgeon said this was all natural as nerve endings would change as the syrinx collapsed (hopefully).

I have been off work since my surgery, a very slow recovery. A day forward and three back at times, but feel like I have some quality of life back.

My partner is disabled also and I was the one who looked after him pre- surgery, that was my biggest challenge! Letting someone look after me.

I got 3 nth scan results in March and the syrinx had almost all collapsed.

I have been admitted twice since my surgery, with infection, and beyond severe pain, had scans done again but all was clear, and syrinx remained same since last scan.

I start phyisiotherapy next week and my first appointment with a pain clinic, I'm hoping that helps, as I still have numbness in my abdomen/ribs and back, and severe pain.

I am still coming to terms with my diagnosis and lifelong condition, but I'm hoping to return to work really soon, and take each day as it comes.

I just wanted to share my story with you all, and for anyone wiring how someone will look after you, it's amazing how people find a way when faced when a challenge!!

Good luck to you all😀💙

Well, I've had an update of sorts - after increasing back pain (described below), I had a further MRI, and a comparison has revealed the syrinx has expanded. I'm a little confused though, as the neurosurgeon says I need to have the decompression surgery, but also says it's not urgent and can wait, and I should discuss it with my family and get back to him if I want to go ahead. I feel a little lost, so I'm going to see another surgeon for a second opinion. Obviously an expanding syrinx is serious and needs treatment, but I feel very burdened by the decision to go ahead, especially since we have no family here and my wife would be all alone looking after our little one. 

Regarding the pain, I feel it roughly where the syrinx is (T4-T9 if that means anything to anyone), but it kind of radiates to the left side, round and into my ribs, chest and abdomen. Sometimes it's very sharp, almost like I could draw a line with a pen, and sometimes it's very generalised, like a muscle ache. I've started to have small spasms in my lower back, and occasionally wake up with pins and needs in my legs. These things come and go, I can go weeks with nothing, but the overall picture is definitely worsening. 

I don't know if this is usual but I find it very frustrating not being able to desribe the pain properly. The surgeon asked me to rate it from 0 to 10, but I don' tknow - sometimes it's 3, sometimes 9, sometimes 6.

Anyway, I'm feeling very sick with nerves at the thought of this surgery, I really don't want to have it but I'm feeling trapped as obviously I cannot risk paralysis. It's all quite depressing and stressful. 

Sorry for the downbeat post. Best wishes to everyone.

Thankyou