Too "high-functioning" for surgery but in constant pain

I have been a lurker for awhile, but was encouraged by my husband to be an active participant. As much as he is there for me, he cannot truly empathize with me.

I started having headaches/neck pain when I was 12 years old (now 40). I went to all kinds of doctors, had all kinds of tests performed. It wasn’t until I was 30 or so that I was actually diagnosed with Chiari. While it was a blessing to finally have an answer, it broke me a little to have my doctor say there was no “cure”. I am sure you have all had that moment.

I had a very supportive headache specialist who tried different meds even Botox, but nothing worked. Then I moved to Western Washington, eventually got a new neurologist and was even referred to a neurosurgeon. Basically the neurosurgeon told me that I was too “high functioning” to be a candidate for surgery. I have full use of my legs and arms and am fully mobile. Again, it broke me a little. I know that surgery is not a cure-all by any means, but it was a sliver of hope. And I didn’t even have that anymore.

I continued to see my neurologist, trying different meds. After a while, when I would bring a new symptom to him, he would basically just shrug and say “well, it’s Chiari.” Meaning there was nothing we could do. He would refill my Xanax and muscle relaxers for another few months.

At this point, I’m just trying to survive day by day. I don’t feel like I have any quality of life. I struggle to sit at a desk 8 hours a day. I do all of the coping strategies; massages, good pillow, avoiding anything that could jar my neck, but the pain is just getting worse.

I also just feel like my husband is missing out on life. Most of the time, when I’m not at work, I don’t feel like going out and being social. I can’t go on roller coasters with him, I avoid road trips as much as possible. All things that he enjoys.

I am just struggling to find hope or encouragement anymore. I know the pain is just going to get worse as I get older. And the fact that I’ve been in pain since I was 12 is only icing on the cake.

Any advice or insight (or even a listening ear) would be appreciated

Hey Ali,
Welcome to Ben’s Friends
Unfortunately your experiences with this rare condition is not unique, in fact when it comes to neuro conditions, it’s rather common. I too had neuro symptoms as a child, but nothing identified for many years. It wasn’t until I had a major incident that a bit more investigation was undertaken.

Initially, for me, it was all minimised, but over time my symptoms progressed and progressed. Then they operated and I’ve been on a bit of a medical rollercoaster ever since. The initial surgery assisted in dealing with some symptoms but unleashed a whole heap of others.

Do you have access to your medical reports/scans/tests etc?
If so, you maybe be able to request a consult with a neurologist/surgeon from somewhere like Mayo for something like an online tele-consult, even if it’s just for a 2nd opinion.
Chiari malformation - Symptoms and causes - Mayo Clinic
I’m in Australia and in my state to say my options, neurosurgical options, are limited would be an understatement. To obtain a truly independent opinion, I needed to consult an interstate neurologist.

Others cannot feel YOUR pain. They can’t comprehend your symptoms. I’ve tried to explain the reality of what I try to manage and even some of the medicos look at me questioningly, so how can others grasp it all??. I even had other medicos say ‘Well, that just cant be happening…’ but it was. This is where we need to be strong self advocates. There are also organizations such as Brain Injury Association of America | BIAA (biausa.org) that may also be able to assist in how to access services that maybe available to you.

In my opinion use EVERY service that is available to you (and that includes us). Others here may have been in similar circumstances, I say ‘similar’ because every neuro journey is different, but we know what it’s like 'cos we’ve lived it too. So, come talk to us.

Merl from the Modsupport Team

Secure a review of MRI with a different neurosurgeon. Discuss longitudinal and horizontal views of the foramen magnum.

Bring a list of your neurological symptoms. Prepare yourself to present neurological symptoms and not dwell on what the doctor would perceive as psychological.

It is hard when a doctor dismisses your concerns and says there is no cure. Of course, neurologists do not have cures for the conditions that they treat, just medicine. More concerning when we know that surgery sooner rather than later - when you have more symptoms - leads to better outcomes.

Good luck with the Chiari journey

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Now I honestly didn’t know what high functioning was until you explained it. Thank you. But does that mean that a person would have to lose the ability to walk/write before they consider surgery?
I read in a doctor’s journal where if you hold your headache in front (frontal lobe area) the surgery will do you no good, in fact make the symptoms worse. But if you have them in the back of the head (aka chiari headache) then prognosis would be good. I know two doctors never think alike but before they started cutting on other people maybe that should of be in the “fact” area of the brochure? And if it is true, then why waste my time even trying? It’s either this or breast cancer that’s going to take me out. Probably the cancer since it is spreading rather fast like. Its in my lung and lymponodes now. Oh well right.

Hi Ali,
I don’t get on here very often so just read your post. I’m from western Washington too (though I’ve since moved to ID) and am just so sorry for what you’re going through. It is so hard when you feel like your symptoms are disregarded, or there is no hope of them improving. :sob::pray:

Can you try to go to a different neurosurgeon? I went to Dr Ellenbogan (sp?) up in Seattle 2 years ago and he was
very helpful and readily suggested surgery for me. I was extremely dizzy and couldn’t walk very straight, but could walk. I did have numbness in my hands and feet as well, but not completely immobilized. My herniation is nearly 15 mm. Not sure what your other symptoms are but it would be awesome if you could get a second opinion, especially if you feel that surgery would help. I have chosen not to pursue it at this time. Have you had a CINE flow study? I haven’t myself but have heard that can help figure out if your CSF is really flowing or not (is that right?)

Just curious, have you (or anyone else reading) tried different elevations? In WA we were at sea level and my symptoms were pretty constantly terrible. We are currently at 3,000 ft… first 6 months were hard, but I have much fewer symptoms than before. I really have no clue if that has helped or not, but when I’m back in sea level areas of WA and OR I tend to be more symptomatic, so I do wonder, and I’m just curious if you’ve tried that. Going through passes of course always makes my symptoms worse, but if I stay in higher altitudes I seem to do better (once your lungs adjust to it as well, haha. Hiking at first was turtle paced!)

Another thing that helped me, which was honestly annoying to hear suggested at first because it seemed soooo impossible :laughing: is exercise. Not necessarily workout exercises, but just lots of movement throughout the day. I have no idea if you already do or if your schedule allows for it… for me I’ve noticed my symptoms are 10x worse and much more constant when I have to work in an environment like you said you do- 8 hours sitting at a desk, or just doing computer work, etc where you don’t have to/can’t get up much. Thankfully it has worked out for me to help run a small hobby farm, where I’m milking goats, taking care of farm animals, training dogs etc all day. So I’m doing light, though physically active work pretty much all day long. I have noticed a tremendous difference in how much better I feel when I can be doing gently active, well-paced activities throughout the day. I have no way to support this theory, but it’s almost like it just gets things flowing better, which reduces the inflammation, and my brain can function more freely too. Not to mention just being in the great outdoors! I understand if your job wouldn’t allow for this, but thought I’d throw it out there in case it could give you some ideas of what could possibly help…

Of course the other two things I’ve noticed help a lot is getting enough sleep (essential! Though I know it’s hard for some people. That’s where the exercise helps too, though, you actually feel tired enough to sleep!) and drinking tons of water. Honestly in my case I believe it has also been prayer as well, as my symptoms were so terrible even 8 months ago that I felt broken like you, that things would never improve. I totally know what you mean when you said it feels like it breaks you when they say there’s no cure, etc :sob: I mean, how depressing! I’m not sure where you stand in regards to faith, but for me the only true cure I have found is Jesus- especially emotionally. When I was 17 (10 years ago) I almost committed suicide because I was on the breaking point of not being able to handle the physical and emotional pain anymore. But the Lord saved me from that. I do not always have the perfect attitude, I still have so much to learn and so far to go! But I can truly say that though most of my life has been full of pain like you, I am so grateful to be alive, because I get to experience the hope and joy of Christ who helps me have hope and faith, and even joy in the midst of the pain! He cares about each of us individually, and even in our pain will be there for us if we seek Him. That is truly a miracle, and even if I never am fully better before I die, I’m just so grateful to get to walk with Him. “Though I walk through the valley of the shadow of death, I will fear no evil: for Thou art with me…” Psalm 23.

Anyways, this went on longer than I anticipated, and maybe you’ve already tried all these things. But just know I understand how you feel, and hope and pray you can find more relief and encouragement :hugs::pray:

Prayers, Mandy

That is so interesting about the position of the headaches in regards to the success of the surgery. I was still able to walk when they recommended surgery for me, but I was very dizzy and had numbness in my hands and feet, as well as the Chiari headaches mostly.
I am so sorry to hear about your cancer!!! Definitely will be praying!!! :pray:

Thank you all for the kind words and support. I am doing my best to be my own advocate. I have an appointment for a new neurologist in a few months. (Of course it takes months to get in). I am doing massage therapy once a week. I discovered that my insurance pays all but a $20 copay so I’m seeing if that helps at all. I’m doing all I can to not be in so much pain at work.

Again I thank you for the support and suggestions. It helps to not feel so alone in this and to get advice when I need it.