How long should/could I wait for surgery?

Symptoms and Treatments
#1

I was diagnosed almost a year ago, and had an occipital blocker in October. The shot itself hurt more than I expected, but it did take the edge off of the headaches. The effects have since worn off, the headaches are back, the injection sites still itch and are slightly sensitive to the touch.

I know my next step is surgery. Day to day, my head feels like I’ve had too much to drink (even though I haven’t) and I’m often queasy. My balance is off, I lack energy, and I have a hard time sleeping through the night, even after taking ZQuill.

My dilemma is finding the time to take off from work (I’m a server and bartender, so I don’t get paid sick time) and I’m the single mother of 2 college students.

I know everyone is different, but how long can I go before I can’t go any more? I don’t want to get worse, but I worry about being able to support myself and my kids. Does anyone know if Chiari falls under disability while recovering from surgery?

Any information or advice is greatly appreciated!

1 Like
#2

Hey Julie,
“…how long can I go before I can’t go any more?”
From my experience, years. BUT (and this is a big but) I ignored neuro symptoms for years and things got progressively worse. They operated and some things did improve, but some things didn’t. When I queried why things weren’t improving I had a Dr put it back on me “…well, if you hadn’t waited so long maybe it wouldn’t have gotten so bad…”

Now, that was one dr’s opinion and some of his angst was due to his treatments not having the desired effect, but it did make me think (and I still do to some degree) maybe I should have acted sooner. Neuro symptoms can be an odd beast, they can be slow and progressive or they can be like a lightning bolt. I’ve experienced both types over the years and neither has been good.

I am not a Dr, I’m merely a patient, but believe me, the more things progress the harder the comeback. I would highly recommend you speak to your dr/PCP about what sorts of support services maybe available in your region, both for you and your children. There will be a social work department as part of the hospital network. I’d recommend calling the hospital prior and obtaining the information and making the needed arrangements now, whilst you can. The last thing you want is to be hit by a ‘lightning bolt’ and not have a plan in place. Then once your plan is set you can then look at the next steps if surgery is required.

Believe me, it’s better, for all concerned to have a plan in place, than to have the bottom drop out of your world and no plan at all.

Merl from the Modsupport Team

#3

Thank you for your advice and input! It’s looking like I really should be doing this sooner than later so I can hopefully get my quality of life back and hopefully not do more damage. I’ll admit I’m scared of the unknown, of the pain, the recovery, if it works. I’m an extremely active person and this whole brain thing is really frustrating. I’ll make the calls to see if I qualify for assistance while out of work. Putting this off sounds like it’ll be a bad idea.

Thank you again!

#4

Hey Julie,

Make a plan. At the very least get a consultation with a neurosurgeon and establish ‘What are my options here?’ I cannot recommend it more. Make a list of your questions because often in such situations it can be really easy to become overwhelmed, well, that is, I did, initially. “That’s my brain, that’s what makes me, ‘Me’ and you want to do WHAT??” My mind just went to mooosh. I left the surgery, numb, about an hour or so later, I processed it a bit and then all of these questions came “What about…?” “What if…?” “Why?” “How?”…???
The next time I had an appointment I had a list

And that’s normal.
I’ve needed a few neurosurgeries and it never becomes ‘normal’. With my first I really had no idea what to expect, but the day they told me I was to have another neurosurgery. I drove from the hospital, down the the local beach, walked out to the end of the pier. The fear just welled up from the bottom of my boots and I threw up. I’d just started in a new work role, I’d recently started a new relationship. I didn’t think it was fair on either my employer or girlfriend to have to manage me, so I figured ‘That’ll all be over’. Little did I know, they both had other plans. My employer changed my role to accommodate and my girlfriend stuck by me, eventually marrying me (She’s a sucker for punishment, taking me on).

I thought I knew how it would all play out without having all of the information and I was VERY wrong. Go make an appointment, get the information, ask ALL of those questions, discuss it with those around you. Then you can make an informed decision.

Merl from the Modsupport Team

#5

@ModSupport What you said is partially what worries me. I’ve had progressively worsening symptoms from my mid-20s and am now 35. (I was brushed off by ENT specialists and prime cares when I brought my issues up, I broke my nose at 33 and the checked to see if I can a concussion and that is how I found out.). My original neurosurgeon said to wait b/c my coordination hasn’t suffered at all which in his words was “shocking considering [I’ve] never had concussion but my MRI looks like I have had a severe TBI”. Like @Laxnastmom I find myself feeling almost intoxicated (though without loosing my balance) more and more often. My previous neurosurgeon said he didn’t want to operate unless issues with coordination/balance started to occur but I’m already progressively taking more and more ibuprofen and sometimes Nyquil just to sleep or get some relief from my back pain and headaches in the morning. I was offered 500mg ibuprofen but I don’t know if that is necessarily a good “solution”

#6

Hey AndyRoo,
Welcome to Ben’s Friends.
I’m sorry to say this but your experiences with the medicos are NOT unusual, in fact the ‘Wait and Watch’ theory is very common. It was one I’ve received too, but not one I accepted, as my symptoms were progressing more and more. Nobody knows how bad your symptoms are but YOU and if things are progressing, my recommendation, don’t let them write you off. I had to get a 2nd, 3rd and 4th opinion before they took action. I had ‘odd’ symptoms for many years (Decades) that were written off, discredited and ignored by the medicos. I was told it was all a psych issue, that was until it all got to the point of emergency. Then they came out with the line ‘Ohh look what we found…’ as if it was all something new. GGGrrrrrr

ENT’s are highly qualified when it comes to matters regarding ears, noses and throats. But outside of their specializations, their knowledge is not so complete. PCP’s can be fairly good for your normal, ‘run of the mill’ medical needs, but anything outside of the ‘normal’ many of them have no idea (even if they won’t admit to that fact.) That attitude of ‘Well, I’m the dr, so I know. You? you’re just the patient… …you wouldn’t know…’ is arrogance at it’s peak. The fact of the matter is you know ‘You’ better than anyone and if you know things are progressing then you need to speak up. Don’t let them discredit your symptoms. Get a referral to a Chiari knowledgeable neurosurgeon and if you need another opinion, then get one.

Some neuros are of the opinion ‘If the tonsil is less than ‘X’ length, there will be no symptoms…’ but just read through some of the other members posts here. Some have a large herniation with minimal symptoms and yet others can have huge symptoms but only a slight herniation. As a guideline length maybe important but using 'length ‘X’ as a rule is not always right.

The medications maybe OK at hiding the symptoms, but the cause is still there. Long term use of meds to mask symptoms has it’s own risks. Keep a record of which meds you are taking and your symptoms too, it may help to show any patterns. It can also show the medicos you are being proactive in your own care.

Hope it helps
Merl from the Modsupport Team