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?
“…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
Post surgery for me…
Occipital pain Check
Migraine diagnosis Check
Occipital Neuralgia “diagnosis” Check
This is not a diagnosis. It just means that you have head pain and nobody knows why!
Brain will not improve Check
Not all doctors got the memo that the brain is plastic. What has the medical community asked you to do to change or rehabilitate your brain? Crossword puzzles do not count! Even stroke patients can access a minimal amount of therapy.
Thoracic outlet syndrome “diagnosis” Check (Again, not a diagnosis!)
I hear you. We think that surgery will fix everything, but it does not always and the medical community gets frustrated with us because the tests and images look fine. They think that there is no reason for our symptoms. Pain management is the answer! But it is not.
I just posted about the brain and how the Chiari brain processes information differently. Please have a look. Also, please know that brain rehabilitation is highly effective for chronic pain states. Graded motor imagery, eye therapy, mid-line work, vestibular training with neurodevelopment rehab, and more are all very effective at normalizing the brain’s processing system and reducing the brain’s pain perception.
Unfortunately, folks tend to not know what these terms are. The average doctor and physical therapist will not know either.
Advocacy and education should be in the Chiarian’s journey - newbies and long-standing folk. New treatment approaches rooted in research are out there and available. We do not have to depend on medications that do not work and standard physical therapy that just makes things worse.
Of course finding those people and the resources is the difficult part. Good luck in creating a better normal for yourself!
Thank you for your encouragement. I often get discouraged because it’s hard for others to understand. I have tried every treatment/medication asked of me and am still no better off. Sometimes I even question myself- if the Drs can’t find what’s wrong maybe I am being dramatic? But then a bad flare up hits and I know I’m not making it up. I have a hard time listening to my body and try to “tough it out” but I’m learning that is not useful. I also am having trouble with acceptance. I vacillate between depression and denial- haven’t been able to get past that yet. I am sorry you have had a similar experience but I am grateful to hear someone else’s story and know I’m not alone.
I will look into your posts and suggestions, thank you. I am amazed at the lack of evidence based research for these type of issues and how many medical providers really have no idea. I am also glad to hear your story- and am amazed at how similar it is! That gives me relief actually because I have felt like I am wasting money and time trying to get an answer. Throughout this experience I have felt so isolated because I know very few people with Chiari and every case is so different. Did anything ever come of your thoracic outlet diagnosis? I appreciate your help and knowledge.
Trying to get others to understand is near on impossible. I say this 'cos I’ve tried. I’ll explain it to you this way: When you break your leg it affects your leg. The dr’s put your leg in a cast and it’s obvious you’ve got a broken leg. 8weeks later the leg is healed, they remove the cast and you return to your normal life. Now, let’s talk about the brain. Often with the brain the symptoms are invisible, others can’t see. It often doesn’t only affect your head but affects the whole body, the whole person. 8 weeks later the wound may have healed but the ongoing impact can be lifelong. Others outside of this reality just don’t get it, they don’t understand it. The theory of it hurts, it heals and things go back to normal simply is not within our reality. Others outside of this reality simply don’t get it.
Sometimes I even question myself- if the Drs can’t find what’s wrong maybe I am being dramatic? And I think we all do (Well, I do anyway), but then, as you have found, reality kicks in and the symptoms increase. Toughing it out is common. I have what I commonly call ‘The caveman mentality’ ie “I man, I strong uggg” and fight against the reality of it all, but to my own detriment. IDIOT ME. And I say this because I know it, but still I push those limits. I use to try to convince myself I was building stamina, but the reality was I was only driving myself further into the ground. IDIOT ME.
I also am having trouble with acceptance When you learn to FULLY accept… ……Tell me how. I ‘try’ not to go into depression, I’ve been way down there before. NASTY. so I ‘try’ to avoid that. But the denial of my reality ohh that’s fairly normal for me. Like I say above “…I don’t want to accept ‘this’…” but the fact is I have sweet all choice in the matter and my body tells me so “Laydown or I’ll put you down” and it puts me down HARD if I don’t listen. Sure, I can ignore it and push on through, but then come tomorrow I pay for it in agony.
All of this really can be a super fine balancing act and what balances today maybe too much tomorrow. We get it because we live it too.
Merl from the Moderator Support Team
In regards to the thoracic outlet syndrome “diagnosis”, you must keep in mind that it is not a diagnosis but a cluster of symptoms (neck and shoulder pain, arm/hand numbness and tingling, hand weakness). There could be a variety of reasons why someone is experiencing those symptoms.
However, when a person is told that they have thoracic outlet syndrome, average physical therapy does a series of poorly supported tests then assigns neck and shoulder girdle stretches, talks about posture, and does ultrasound. I also had nerve conduction tests done several times which indicated no concerns. If tight muscles in the neck and shoulder girdle are the cause of symptoms then a person might get better. If there are other causes than a person will not.
Of course, with Chiari being the root of the problem, I fell into the category of those not helped by regular physical therapy. I had to find physical therapists that were more knowledgeable in their assessment and understanding of a brain hernia and how it affect tissues, motor functioning, brain processing, posture, and nerve sensitivity.
I was assessed for motor control function at the wrist, elbow, shoulder, and neck and did motor control exercises for all the joints. Correcting movement patterns supports the nerves in proper alignment and stretch so that they are not stressed unduly which results in arm/hand pain.
My body image (my brain’s ability to imagine body movement and positioning in space - not what size I think I am in the mirror!) was assessed and found to be severely impaired. I followed a graded motor imagery programme involving the neck, shoulder, elbow, and hand. This treatment addressed the head, shoulder and arm/hand pain to some degree. I write in the wrong order as I had to do the motor imagery before I could do the motor control exercises as they were too aggravating.
I had to do neurodynamic exercises for the upper extremities and neck to finish it off. Both of these techniques are researched and taught by the Neuro-orthopedic Institute based in Australia.
In regards to my hand weakness, my current understanding is that Chiari has affected my grip strength for good. I have not specifically addressed this issue, so when I finish up with more pressing physical therapy concerns, I may be pleasantly surprised.
You are not me and will need to be assessed and have exercises targeted to you specifically.
Also keep in mind that physical therapists are generally a friendly bunch that do a good job of talking to you and making you feel that they are listening and understanding you. These are not bad things - they are often sorely lacking in the medical world when it comes to rarer, strange conditions that often do not make sense to the medical community. Unfortunately, they also do a good job of selling their skill set when they are not actually equipped to deal with someone with Chiari.
If you have already tried physical therapy and have not made headway after a good go, then it is time to do some research on what physical therapist has the skill set that you need. It is best to research this before making an appointment. Talk to them and say you are looking for graded motor imagery assessment, neurodynamic exercises with folks who are sensitive, motor control (not with a flashlight but individual movements keeping other body parts still). Be firm and do not let them talk you into coming if they do not know what you are talking about. People who treat concussions or Complex Regional Pain Syndrome and USE the treatments I mentioned can help.
A challenging endeavor for sure, but know that you do not need to stay the same or get worse. You just have not had the medical support that you need. Good luck in finding it!