Chiari Online Support Group

New normal?

I am 2.5 years post op decompression. At first my symptoms were improved- the unrelenting head pressure, nausea and vomiting worse in the morning, and feeling like I was going to pass out. Then 4 months post op I started getting right sided occipital pain that was new. I was diagnosed wih migraines even though I had not had them prior to surgery. I tried a ton of different med combinations but kept having side effects. I started physical therapy and proceeded to do that for a year. At one point I had a “migraine” for 31 days. I had another MRI which my NS said was good. I was then diagnosed with occipital neuralgia and sent to pain management. I did 2 epidural injections to help with the associated right arm pain but they did nothing. I have seen my NS who said that to think of it like I had a stroke- and my brain will probably not ever improve. The pressure is getting worse, as well as the pain. My neurologist commended me for working through the pain and not fililng for disability. My pcp and PT are wondering if I don’t have thoracic outlet syndrome, so now I am waiting to see that specialist. I guess the point to my story is that I am really overwhelmed with the pain and symptoms- my family doesn’t understand, it’s hard to work much less live a normal life. IF this is my new normal- how do I cope?

Hey aao,
“…IF this is my new normal- how do I cope?”
And that is a question that many of us with rare conditions have and the answer is…
… There is no answer.

Similar to you, post neurosurgery I went looking for answers. If a dr suggested a treatment I gave it a go. The surgeons were of the view “We operated, we fixed”, but this was all FAR from anything like fixed. I was given all sorts of diagnosis from cervical dystonia to trigeminal neuralgia from nerve pain to migraine and everything in between. I tried all sorts of treatments from hydrotherapy to acupuncture to manipulative physiotherapy to meditation and massage. Then came the medications from heart meds to anti seizure meds from pain killers to psych meds, I also tried Botox. None of it worked, some even made my symptoms worse.

I have a VP shunt within my skull and as far as the neurosurgical team were concerned the scans all came back normal, so ‘well, your symptoms are nothing to do with us. It’s nothing we have done…’ but I wasn’t having pain like this prior. The shunt has a programmable valve, I’ve had that adjusted, adjusted and adjusted some more and that hasn’t helped.

So, now what??

Some dr’s are of the opinion that some people simply sit down with the attitude of ‘Poor me’ and that is the exact opposite of what I have done. I have followed through with every diagnosis given, I have followed through treatment suggested but none of them have been my ‘key’. If someone suggested that I stand in the corner on one leg singing kumbaya would help, then I’d give it a go. But nothing has worked.

So now what?

Acceptance??? This has been VERY difficult for me. I don’t want to accept ‘this’. Who would want to accept this??? NOBODY. But the reality is I really have no choice in the matter. I have exhausted EVERY option available to me, so my only move left is to accept. AND this has been very discouraging. Some days that ‘acceptance thing’ is OK, some days I fight like hell against it. But in doing so I find the symptoms worsen, which just goes to prove that fighting it doesn’t work either. The reality is right there in front of me, I can’t ignore it or I do so at my own peril. So all I can do is manage the best way I can.

The understanding of others, now, that is a difficult one. I’m often saying “I feel it would be easier if I’d lost a limb. People would be able to see what the issue is. But with it being invisible, others have no idea”. Some people like to judge, I had a nurse in the hospital post neurosurgery see me laying in bed clutching my head say to me “Ohh, it can’t be that bad…” I told her to lay on the floor and I’d boot her in the side of the head. She was offended, but then so was I in her statement. We are not in this position by choice. Would any of us choose this? HELL NO. Nobody would, so how do we manage??? The best way we can. If that means medications, then take them. If that means resting, then do so. If that means pacing our activity, then do it. If others want to judge, fine, let them. They are not the ones trying to manage all of this, you are.

How do I cope? There is no magic answer to that question and for me it fluctuates from one day to the next. Others who have never been here may NEVER comprehend this, this is a reality nobody ever wants, not even me. But the awful reality is I have no choice in the matter. I can curl up in a ball with the ‘poor me’s’ (and I have at times) or I can do what I can, when I can. I have to manage all of this the best way I can, for me, not anybody else. Please know that we understand this because we have been there too, so come talk to us. You’ll find no judgement here.

How do I cope? The best way I can.

Merl from the Moderator Support Team