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

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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

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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

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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.

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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

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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:

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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.

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I don’t think it can be based on that theory considering I had to be decompressed at 5mm because I was becoming a vegetable, having to use a walker at age 37 and could barely speak leading up to surgery and I didn’t ever have Chiari headaches prior to surgery. Now specialist are supposed to be basing the need for surgery on severity of symptoms…

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Thank you for sharing. I traveled to find a surgeon that specializes in chiari care (within my state). I had use of my arms and legs, but I was a candidate for surgery at 40. I also struggled the same as you. I chose to have the surgery and the surgeon told my husband when he was done in the OR that it was more compacted in there than he thought. My symptoms were going to worsen. I had occipital headaches (different from migraines), dizziness, arm pain and burning, unsteady gait/balance issues. Leading up to the surgery I did have a CSF flow study which proved blockage of CSF in a couple of different locations, the surgery restored that flow. I feel better and my quality of life has improved. Today, it is important for me to exercise and eat healthy and monitor stress. Find a different surgeon if you can and make sure you have MRI and and CSF flow study, don’t get dismissed:) hoping you get solution and feel better.

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Hi again, a couple things I forgot to clarify…I went to a surgeon who specializes in chiari because he would be able to determine if there was another underlying issue that decompression surgery wouldn’t be able to help…very important. What I meant for exercise for me is mainly walking. I don’t lift weights. Some can and don’t have issues but for me is makes me feel worse. I also enjoy biking.

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I had surgery and yet I would have qualified as high-functioning by that doctor’s analysis. I did a great deal of research before having surgery and that is the first time I’ve ever heard that term. :thinking: Hope you get a second opinion. I would have gotten to the point of serious problems without the surgery.

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My new neurologist thinks that my symptoms aren’t typical of Chiari so has me running the gamut of tests, PT, sleep specialist, etc. I’m not sure what to think at this point. And I’m not sure how she can think that. Every time I try to escalate to a better physician/clinic, I’m told that since nothing has changed significantly that they won’t schedule me.

I’m just going along for now because I’m not sure what else to do. What am I supposed to do when the Chiari isn’t bad enough to warrant their attention but affects my quality of life?

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Might be worthwhile to ask your neurologist what they think are typical Chiari symptoms. “What do you think are typical Chiari symptoms? What are some of the less frequent ones?” Can help to find out what their perspective and knowledge-base is as related to Chiari. Good luck with the search for health!

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I was also considered “high functioning” despite having a ~26mm herniation (I’m told size doesn’t matter too much, but that seems like a hell of a lot to me :sweat_smile:). I found out about my Chiari when I was 17 (26 now and about 7 weeks post-op) and was pretty much asymptomatic apart from the occasional dizzy spell, headache, and near-constant neck & shoulder pain. Then when I turned 25, everything changed and I was experiencing more severe symptoms, although still technically considered high functioning (no problems with my walking or motor function, etc.).

I tried physical therapy, chiropractic, massage, cupping therapy, muscle relaxers, etc. but nothing gave me true relief – just a short abatement of the worst symptoms. I was in and out of my GP’s office as well as the ER, but kept being told it was unlikely I’d need surgery since most Chiari patients don’t. It was so defeating and exhausting to be told “no” in so many different ways by so many different people, all who were supposed to be helping me.

Finally, I decided I needed to advocate for myself and met with 5-6 neurosurgeons in different states to find the right fit, eventually settling on Dr. John McGregor at OSU in Columbus, OH (but I also really liked Dr. Daniel Prevedello, also at OSU). What set them apart was that they told me “So you’re really struggling. You need help,” to which I started bawling because I’d waited so long to hear those words.

To me, it sounds like your neurosurgeon is not the right fit. I think it’d be best to get another opinion (preferably many until you find the doc you’re comfortable with). You will find someone who validates your condition, because it is a problem, and you do need help. Wishing you the best of luck on your journey and a speedy recovery if you continue to pursue the surgical option!

Best,
Kate

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I agree that you should maybe inquire as to what the dr believes the typical symptoms are. There is such a wide variance amongst the drs as to what symptoms are actually due to Chiari. Dr Gerald Grant has several talks he has given posted on YouTube. He is a neurosurgeon at Stanford that seems to have a special interest in Chiari and has spent a lot of time researching and studying that part of the brain affected by Chiari. There are now many symptoms beyond those once used to define Chiari and Dr Grant goes into a lot of those. I learned a lot from his videos that I didn’t know and actually suffer from a considerable amount of the symptoms on his list. I know you mentioned taking Xanax and muscle relaxers and wondered if you had ever tried gabapentin (neurotin)? I have been on that for maybe a year now and it has significantly cut down the number of days that I suffer from the debilitating neck pain that comes with the chiari “squeeze” or what I call a “chiari flare”. I do find that mine tend to come in waves. Once I have one on a given week usually more will follow. Then I may go another week or two with none. But I would say that before I started the gabapentin I had 10-15 days a month where I was incapacitated with a flare for at least half the day and often all day. Now I would say it’s more like 5-7 days a month so I consider that a win. Obviously, everyone is so different but you might consider looking into it and talking with your dr if you haven’t already. I’ll be sending positive thoughts and prayers your way!

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All-

I really appreciate all the responses and apologize for taking so long to reply. It has been a roller coaster.

I went through everything my new neurologist had recommended. The physical therapy, the new tests, new medications and still no change. At my follow up appointment with her, she was still stumped. So she referred me to a neurosurgeon in Seattle as kind of a last resort.

At that appointment, the surgeon said that she would not necessarily recommend me for surgery but that she would do it if I went ahead. Honestly, I have tried everything else and was at the end of my rope with the constant pain, so
my husband and I decided to go through with it.

I had the decompression surgery done 4 weeks ago tomorrow. I was only in the hospital overnight. My recovery has been going fairly well considering I don’t have the constant nausea and I’m not being pressured to return to work. But I do still have a lot of pain.

My biggest issues are that I am not a patient person and that every person’s recovery is different. There is no roadmap of how this should go for me. I worry that I’m not recovering like I should and that this pain is my new normal. Again, not a patient person so I know that’s not necessarily the case. I worry because my husband still has to do most everything around the house on top of working although he is the best man and does it all without complaint. The depression and anxiety get to be a lot some days.

I’m having issues with the headaches getting worse when I try to read on my Kindle or watch tv with a lot of movement. I’ve been getting dizzy every time I stand and walk around, especially in the last week or so. My follow up with the neurosurgeon is next week and I will definitely bring those up to her.

Despite all of this, I’m very grateful that I listened to all of you and became my own advocate. I’m grateful that I sought out a second opinion and am doing my best to
be more optimistic and patient lol

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Hey Ali

Ohh, me neither. I can have the patience of a saint with other people, but when it comes to self… …nil. My frustration with it all was MASSIVE. It used to be that I had 2 speeds, full tilt and stopped. Now, even getting to 1/2 pace is a struggle, but if there is one thing you need on this journey, it’s patience.

This is a time when you need to give yourself a break. Be kind to yourself. Me, I didn’t listen. I wanted the old me back and I wanted it back NOW, so I pushed myself. I pushed too hard too soon doing myself a greater injury, ending back on the neurosurgical operating table. So, as difficult as it is to allow your husband to do ‘your’ tasks, honestly, he’s doing you a favour, accept it. DO NOT go pushing your limits.

None of the issues you have listed ie headaches, dizzies are unusual, especially at 4weeks post-op, but certainly bring them up with the surgeon. I’m many years (10yrs this year) on since my last surgery and some days I can manage OK, but then some days it all overwhelms me and I still get the headaches, the dizzies, weird tingles, eye pain etc etc. I try to learn how best to manage it all and ‘try’ to manage around it. I say ‘try’ because I’m not always successful.

Good luck and let us know what the neurosurgeon says.
Merl from the Modsupport Team

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The follow up with the neurosurgeon went well. She said I was healing up great and was very pleased. At the time, my neck was feeling a lot better, very minimal pain compared to before the surgery but still had headaches, which was to be expected.

Right now the neck and head pain are back and worse than before the surgery. I am trying very hard not to be discouraged and throw constant pity parties. I know it can take time but I’m struggling with working half days and I’m not sure how I will do when I have to go back full time.

Right after the follow up, I got a bad case of bronchitis and ended up breaking a rib from all the coughing. Part of me hopes that the neck and head pain are because I had to sleep on my back so much due to the broken rib. I have never been a back sleeper because of the pressure on my neck. The other part of me thinks that is wishful thinking.

Let me know what you think. If I need to start worrying when it’s been 2-1/2 months since surgery and the pain is worse or if it’s just my anxiety and impatience with the process.

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Hey Ali,
If the neuro is happy with your recovery, take that as a good thing.
As for recovery, recovery from neurosurgery takes time. They have disturbed and irritated all of the nerves in that region. They have also disturbed your spinal cord and this could send odd messages anywhere throughout the body.

“…impatience with the process…” Ahh yes, I know that impatience all too well. I wanted to be right and I wanted it right RIGHT NOW!!! I had a life and I wanted that life back. My impatience got the better of me and I pushed myself to recover quicker (P.S. Your body can only recover at it’s own pace, pushing it doesn’t help) I pushed too hard, too soon and ended up requiring further surgery. Don’t be doing that. Illness in the middle of recovery can really set you back.

You need to give yourself a break. You’ve had major surgery, on top of that you’ve had a virus and a broken rib. OMG, just stop. Take some time for you. Let your body recover PROPERLY, then move forward. Get back to some sort of normality, then reassess. Take it from me, pushing your body’s limits (on multiple fronts) doesn’t just add to the toll on your body, it multiplies it.

Merl from the Modsupport Team