Specifics on possible types of surgery

Brain and nerves
1

Hello everyone

I'm new to this site, and found it after researching Chiari Type 1. I was diagnosed with it about 18 months ago, along with syringomyelia. My symptoms are mainly terrible migraines, nausea, neck pain (including a 'rice crispie' clicking noise when I shake my head), and, strangely (at least to me, probably not to a specialist) chest pain on the ribs near the heart. This last one the specialist says is the syringomyelia as it's in line with where the cyst is located in my spine and is likely the nerves being compressed causing pain around the side/front.

I hadn't really had back pain until recently, but lately I even have trouble moving around and am in agony virtually all the time, so am worrying the cyst may have expanded.

Anyway, I saw a specialist in Brussels, where I live, who is something of a celebrity here as he's had his own reality TV show following him around the ward. I'm told he's a leading authority on Chiari and syringomyelia. Unfortunately he was rather brusque and I didn't get to the bottom of things as I'd hoped. What he did say though, was that there were two forms of surgery available to me: the first is less invasive, has an 85% success rate and - the surprising bit - has a recovery time of just two weeks! The second is more invasive and takes longer to recover from. Naturally he advises having the first procedure.

I was going to go have it, and then I read on here some of the comments from people about their recovery, and they sounded a lot worse than two weeks. So I'm wondering, has anyone had a quicker, simpler procedure where they were back at work two weeks later?

I know it sounds a bit crazy, but this guy is an authority on it and I wonder if it's a procedure that he himself invented?

Thanks in advance and wishing you all well.

2

Hi there!

I had the less invasive surgery 5 weeks ago.

No way would I have been able to return to work after 2 weeks!!

I'm struggling with wound infection, ended up briefly back in hospital, have had 3 courses of antibiotics and am exhausted.

Maybe some people could but brain surgery is a big procedure and recovery varies from person to person.

Keep me posted as to what you decide to do.

C x

3

Hi....

I am not aware of a 'quick fix' surgery with a two week recovery?? But, surgical techniques improve and evolve all the time.

( I am not a medical professional). 

I was very fortunate to find and be operated on, by one of the best UK neuro surgeons that specialise in Chiari & syrinomyelia. (I do not have syringomyelia)

From what I understand, the surgery we are all familiar with is "Posterior Fossa decompression" surgery. Depending on the shape of your skull will be the decider if you also need surgery to remove and/or reduce your C1 and C2 (laminectomy) I needed removal of C1 and part of C2, (must have had a big brain, lol) 

Many surgeons, esp in USA put a 'patch' into the dura to create more space. My surgeon did not, the risk of infection and rejecting the foreign body of the patch is very high, so I was thrilled that I felt I was having a less risky surgical technique performed and reassured by his success rate.

The dura did heal itself, (this is quite new, I believe, after many studies showed improved recovery )minor leaks can occur, which are common and heal themselves, mine did. No infection! So many fellow Chiari patients struggle with the patch. But recovery was not 2 weeks! So, I am really keen to hear how and what he will do!

I reckon it might be the keyhole surgery, which of course would be far less invasive, but I have no idea what the success rate is and if further surgery is often needed, or not.

It would be great to hear that a less painful and invasive surgery is available.

Do let us all know how you get on and what it involves, I for one, am intrigued!

good luck and hope you are on the road to recovery really soon 👍

4

Hi Clarey, just butting in, sorry....

i am intrigued, how did they do it? Keyhole?

5

No, Hayleybell sadly. Opened up the back of my head like the other procedure! Loads of my skull gone so they needed to get right in there!!

C xx

6

Hi, I am also in the process of making a decision for surgery and would be very interested to hear more about the less invasive procedure.

The only other procedure I have heard of is similar to tethered cord surgery but is being used on people that do not have tethered cord (Section of the filum terminale ).. I have done no research on this and have no idea what the technqiue involves and if there is enough research done to say if it is effective or not. Could he be referring to this ?

7

hi Hayleybell... did you also have the cerebellar tonsils shrunk ? My NS has told me i need part of the skull, part of C1 and the dura opened to shrink the tonsils and then a patch put in to make more room.

I'm very interested in anything that involves less risks and fewer complications !

8

Yes i did but no patch, as If left, the dura will heal on its own.

Will greatly depend on your NS though.

 

9

Thanks...didnt ask that question so another to add ot my list !

10

Hi, first of all thank you for all your replies and apologies for not saying so earlier. I am seeing the neurologist again in about a month, and this time I'm going armed with lots of questions. I will report back when I find out more about it as I still can't understand how he could be so confident of a two-week recovery.

In the meantime, my symptoms are worsening every day and i basically have a searing headache all the time. I take paracetamol + codeine (which has to be prescribed here even for small amounts, not sure about the UK?), and I worry about being addicted as I need lots of relief. I also work in a pressure job that requires high levels of concentration, and I have an 18 month old girl to look after, so I feel stuck between a rock and a hard place.

Anyway, enough moaning (sorry). I'll keep you all posted.

11

Update:

Well, I went back to see the professor about surgery, but it turns out my headaches aren't being caused by my Chiari. I'm a little embarrassed, but I think my situation could still be useful to know about, since we Chiarians have trouble finding a diagnosis. In my case, it looks like a red herring, as the headaches I have, although they're really, truly horrendous, are not being caused by my malformation, because I don't get them through exertion.

Apparently - and I apologise to those of you who know this only too well - Chiari headaches are brought on my coughing, sneezing, straining or exercise. Mine aren't, so they're unrelated, and I need to resume my search for a diagnosis, as MRIs of my head show nothing untoward. My Chiari is 8mm, which he described as 'relatively small'.

I'm pleased because I won't need surgery, but worried about what it could mean, and frustrated I still don't have a diagnosis.

So, hope that helps someone even a little bit, and I wish you all the best.

 

12

Hi,

My headaches are not brought on by exertion, sneezing, coughing .... they are just there, to some extent, all of the time. They are completely chiari related! I would maybe think of getting a second opinion just to check? Also, size of the chiari is irrelevant - it used to be that nothing under 5mm would be considered for surgery but that has now changed.

Find a Neurosurgeon that specialises in chiari.

13

Hi, thank you for replying.

I did suspect this. The thing is, the guy who told me this is one of Europe's leading neurosurgeons. He even has his own TV show in Belgium! So I was very surprised.

I have managed to get an appointment with another one, and will report back on that too.

14

Hey....

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 😃 

 

15

Hi,

Just remember..... Mary Berry has her own TV show, but I wouldn't let her operate on my brain!!!

16

Ha! Indeed. Although to be fair I would let her bake me a cake.

The TV show thing is probably a bit misleading - it was a reality-type show following him in his job as one of Europe's leading neurosurgeons.

His opinion was that, as my headaches occur at random and are unrelated to exertion, they are so unlikely to be caused by the Chiari as to make the surgery unnecessary.

As I said I am seeing another neurosurgeon in a month for a second opinion and will report back.

 

17

Good stuff, keep us posted.

18

Absolutely! I would ask her to make me something delicious though 😂

 

19

Oooh!

Me too, Hayleybell!!

Hope you're well.

Xx

20

Hello again

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?