Chiari Online Support Group

Getting surgery! Any advice?


#1

I’ll be getting decompression surgery. My neurosurgeon wants to start by removing part of the skull and removing the “roof” of two vertebrae but he won’t be expanding the dura. I’m not so worried about the surgery itself but I am nervous about the amount of pain I’ll be in. If anyone could give me any advice on that, I would thoroughly appreciate it. Thanks!!!

Edit: my friends are trying to talk me out of it. They haven’t said it but they’re acting like this is life or death. I’m having symptoms such as numbness in my face and limbs, I’m experiencing dizziness/lightheadedness (presyncooe), I haven’t slept right lately (keep waking up and feeling too uncomfortable to get or stay asleep), I’ve developed asthmatic symptoms. I’ve had so many unexplained symptoms but they think that isn’t cause enough to go through with it. If that isn’t cause enough then I don’t know what is. Maybe I shouldn’t be talking to them about it.

Edit 2: I’m losing my insurance at the end of the year since I’m 26 and will not be covered by my mom’s insurance past that point. If I don’t get the surgery before then it could be years before I have the chance to do anything. Since I’ve had a sudden onset of new and bizarre symptoms since February that have only progressed, I feel I don’t have the option to wait longer. What if, during the years I’m not covered and can’t afford surgery, the symptoms become absolutely unbearable? I feel like waiting would be too much of a risk. When I first saw a neurosurgeon, I was 15 and he said I may need surgery but I was nearly asymptomatic at the time and still growing. Now that I’m an adult the new neurosurgeon I’m seeing believes that because I’m having these symptoms and because my herniation is so large, surgery would be a good option for me. To clarify, this doctor is some one who doesn’t recommend this surgery unless he sees no other option and he believes it could perhaps really help. He’s had years of experience treating chiari patients and he’s never made any mistakes.


#2

Many years ago I was involved in an MVA (motor vehicle accident). The dr’s at the time didn’t have the scans available today and I was told “Bump on the head, you’ll be right…” but things weren’t right. The medicos all wrote my odd symptoms of as psychosomatic . Add 20yrs and Im driving down the road and the lights went out, I couldn’t see. I went and had a scan and the dr’s came out with “Ohh look what we found… …you need an operation” I was so very frustrated I’d been telling them for years there was an issue but no one was listening.

It was said to me that my first neurosurgery was to ‘fix’ things, remedy symptoms and according to the scans it did. But, what it also did was bring on a whole new set of problems and symptoms.
Prior to the initial surgery, the surgeon asked if I got headaches, to which I said yes as I did. But the headaches prior to surgery, which I thought were bad, were minimal in comparison to post surgery, the post surgery headaches were of a magnitude the likes of which I had never had before. Post surgery I had all sorts of weird sensations from tingles, numbness, audio hallucinations, visual disturbances, co ordination issues etc. I saw my pcp and told him things weren’t right. He ignored my concerns, telling me ‘they operated, they fixed’. I returned to my surgeon, he did a scan and agreed with me that things weren’t right and decided to operate again, this time inserting a shunt. But again things weren’t right, the dr’s wrote my symptoms off, with one telling me “Well you’ve had brain surgery. What do you expect? It will take a while for things to settle…” So I ignored symptoms and continued on with life managing the best way I could.

In total I’ve now had 6 neurosurgeries, each has been to fix an issue, but each has knocked me harder and harder to the point that I can no longer work and what used to be an intermittent headache has now become a constant mind numbing, nauseating migraine/cluster headache which fluctuates from bloody awful to ‘ohh my holy HELL…’. As I say above the initial surgery was to ‘fix’ things, but I can think of another word starting with ‘F’ that better expresses things. It was explained to me that had I not had the initial surgery I’d be dead and I can accept that, but the ongoing symptoms and management of them has become chronic.

Surgery should not be undertaken lightly and although your friends may have some knowledge, it is your trained medical team that you should be taking advice from. I would however recommend you obtain a 2nd opinion again from an independent, fully trained and qualified neurosurgeon. The more information you have, the more informed your decision can be, but surgery should not be undertaken lightly. Take it from me it can be life altering.
I believe talking about it is a must, both to friends and medical professionals. Having differing opinions can help in making a decision BUT please, do not be thinking that surgery is the only answer until you have exhausted every other avenue. Surgery may fix an issue but I can assure you it can also trigger off a plethora of other symptoms.

Merl from the Moderator Support Team


#3

I notice you’ve made a 2nd edit to your post. A bit of advice for you, so that the conversation follows on it would have been better to make a 2nd post rather than a 2nd edit. But with that being said, I can see why you are considering surgery. My only concern would be that, if like myself, you end up requiring further surgery. Some insurers will not cover for what they consider ‘predisposed’ conditions. So although they may cover the primary surgery, any secondary surgery they can turned around and say ‘No cover’.
It is good that your surgeon is knowledgeable in chiari (some are not) so that’s a plus, but personally I would still recommend obtaining a second opinion. Do you know the size of the herniation? By no means am I 2nd guessing your surgeon’s advice, but in my opinion, you can never have too much advice, especially when it comes to neurosurgery.

Merl from the Moderator Support Team


#4

Hey there! I’m so sorry you have to go through this. :tired_face: I had great results from my decompression surgery (it was part of skull and top two vertabrea with a dura patch) and had a doctor that was similar. He wouldn’t recommend it unless necessary. My opinion is to trust the doctor over your friends. Unless your friends are neurosurgeons, the doctor has years and years experience. Also, my surgery was around $150k and if your insurance ends, it probably won’t be covered ever because it is a preexisting condition. That’s not to scare you, I just want you to be informed. Everyone has different experiences but my symptoms are mostly gone and I’m able to work again. I’m now 10 months post surgery.
You wanted to know about pain: the hospital will give you lots of drugs that help but I won’t lie, there is still some pain. Communicate your level of pain with the nurses and they are usually really good about making you feel comfortable. If you have someone or two who can be there for you during and a couple weeks after surgery, it would really help with recovery. I pray you have wisdom for the right decision and peace through this whole thing!


#5

Dear Geo,

I suppose it depends on how good your Neurosurgeon is - but I had NO worse pain following surgery than before. Actually, my Neurodoc only kept me at the hospital 24 hours, then sent me home. Twelve hours after surgery, he had me get up and walk around. If I was able to walk about on my own, he sent me home. I could, and he did. I was already in excruciating agony from the “Chiari squish” (My spinal cord and brain stem got the worst of the compression), and following surgery, it wasn’t any worse - was still there - but gradually started to face away!!! I still have some nerves that don’t know how to stop saying “Ouch.” But, I take a small 3 mg dose of amitriptyline that puts a stop to that.
So, even with permanent brain stem damage, surgery relieved pretty much all the pain I used to have - and I regained 70% physical function. Everyone heals differently, though. But - in my opinion - the Central Nervous System can’t do any healing until it is “un-squished” from the Chiari’s!


#6

I’d like to thank all of you for your advice. You have all been very helpful. I’ve had different surgeries before and I always bounced back pretty quick. I know this surgery is quite different and maybe that won’t be the case but I sure hope it is! I don’t feel too worried about it anymore.


#7

Hello Geo,
I understand the whole insurance issue, as I have a daughter about your age. Here is something to possibly consider. For me anyways, because the Chiari has caused Syringomyelia, I have to see the doctor for the rest of my life. The condition will have to be monitored.
If your situation is serious enough for your doctor to recommened surgery, then you too will probably have to be monitored for the rest of your life (just my opinion).

Point being, you will want to make sure you get onto some kind of insurance soon. There is always the change their could be complications, more symptoms etc. Plus, you will have a very hefty quantify of follow up appts., as it is not a minor surgery.
Just some advice for you, good look in your medical endevours!