Chronic daily headaches after surgery

Welcome Newbies Guide to Chiari
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My son was diagnosed when he was 4 years old. We had 3 surgeries & stayed in the hospital close to 4 months because of so many complications. Rough year after that…then about 2 good years. (His syrnx is smaller but still there 4 years out) About 3.5 years after surgeries he started having high level chronic headaches all day everyday & nothing can touch the pain. He has tried all the emergency medicines (6) that the hospital can give him…they didn’t touch the pain. Did physical therapy for 16 weeks & his pain dropped about 1 point in the 1-10 pain scale. But once he stopped it went right back up to where he started. His pain level is between a 5.5-7 all day everyday. Let me tell you about his pain levels, he has only given himself an 8 once & that was right after brain surgery while he was in the PICU…& they were trying to make him have just Tylenol after brain surgery!! He reserves 10 for death! So he doesn’t ever give himself high numbers so it has been brutal watching him in this much pain. He is going on 10 months now with no relief.
Has anyone else experienced this after surgery & did anything help with you pain? I am so desperate for help!

Thanks Jami

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So sorry to hear about your son. He sounds very strong, and brave. Very difficult to compare and I am early on in recovery. I am currently 3 weeks post op.
a few days after getting home I started to experience massive headaches in the back and temporal areas that shot through the tips of my ears, like fishhooks pulling out. Again, different scenarios, and my headaches were attributed to muscle tension and spasm that I wasn’t able to recognize. I had been taking pain med and muscle relaxer. The muscle relaxer (12 days) was not working at all. We changed it to a different one, added Icy/Hot. Also, as soon as I felt a headache coming, for some reason - warm water from shower helped relax the spasm.
For some reason this combination stopped the headaches (worse than I had ever experienced). Ice numbed but ultimately made it worse.
Are you or have you tried a nerve block, Gabapentin? I just know someone who had success after surgery with it and stopping the headaches, or at least the pain.
Best of luck.

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Hello,

I am so sorry your son has to go through these horrible headaches at such a young age. It was about 2 years after my surgery when my headaches came back. They get pretty bad and nothing works. I dont know about your son but when I get mine I learned that sometimes it helps to take a cloth with a small ziplock bag of ice and I tie the ice to the back of my head where my surgery scar is. Sometime it helps relieve the pain. That is really the only thing that helps me. I hope it might help your son.

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gel pack
gel pack.jpg1200×1200 162 KB

If he is 4 years old, quite possibly he eats a lot of hot dogs and kid food like raviolis and spaghettios. It is quite easy to get the head pain with Chiari as it is. Doctors might forget to tell you to watch sodium levels, even with your children. We all know sodium constricts the vessels. If his vessels get constricted easily with the sodium that will elevate his level of pain even further. For me, whenever I start eating a lot of sodium it exacerabates my Chiari condition. I too have Syringomyelia.
Also, I uploaded this beaded face mask. I just get mine at Dollar tree. You keep them in the freezer and they are wonderful…! When an attack starts coming on, it might be nice for you to have a few of these on hand. Again, none of these remedies will stop attacks, but surely can lessen the pain and degree of severity.
Also, if he is 4 years old he might have a hard time communicating to you , this. When the attacks come on, they are similar to labor pains. Any of several laying or sitting positions might feel good to him. From the outside looking in, most people would want a loved one “to just go lay down” when the attacks come. If you see him doing odd/weird twisting or turning, he is doing whatever possible to alleviate the pain that he can possibly do on his own with his own body.
Another thing is this…sunlight. These things might sound obvious, but have him (if you don’t already) start wearing sunglasses. The sun can seem like lasers to anyone who suffers from Chairi, as would probably migraine sufferers.
So, watch his sodium levels, and possibly purchase some gel packs and sunglasses for him if you haven’t already.

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I just uploaded the picture and apologize to anyone for the size. I tried to shrink it but was unsuccessful.

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Thank you for responding. We have tried muscle relaxants too & they did not work. The problem with Jace is his headaches do not ever go away…it’s like he has had a high level headache for almost a year now. He describes it as someone squeezing his head…like lots of pressure & the pain never moves…the pain is located on the front top part of his head.
He likes warm baths & we do ice packs too. They don’t take the pain away but I’m sure his body is just one big ball of stressed muscle…so those probably help him relax a little.
We have not tried a nerve block. We r in the hospital today so we will ask his dr. Thank you for that suggestion.

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He likes to ice himself. We have bought 4 face masks that have the elastic string to them…freeze those & he can place wherever he needs. We find it funny that his little sister has to have one on too when he gets his out. The ice doesn’t take the pain away but it helps some.

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Thank you for your suggestions. Jace is now 9…and his most hated food is a hot dog & always has been. He is actually my best eater & is one of those weird kids who hates candy. But I will watch his sodium intake.
We have 4 of those face masks & use them daily.
Jaces headaches do not have an on & off switch…it is just permanently on. His headache has lasted almost a year now with no breaks.
The sunlight doesn’t seem to affect him that bad but loud noises are a beast. Physical activity & anything that gets the blood pumping make it worse too. Riding in a car with the constant noise & vibrations kill him. Changes in the pressure outside make the pain worse. Not enough sleep, staying upright for to long…I’m sure there are some I’m missing but those are the main ones that make the pain worse or the pressure worse but…the killer for Jace is the pain has never stopped…the pain his never broken! That’s what I don’t understand. I’m so confused why this kid has had a 10 month headache & why won’t it break & go away?

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I know the last post on this thread is several years old but I had to take a chance and reply. My 11 yo has had a non stop headache for almost 9 months now… level normally 6/10 sometimes 8/10. I’m praying that you’ve found relief for your son and can possibly share your experiences with me. God bless you and your sweet boy💜

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I am glad you responded. We are in the same boat. My daughter had surgery in Dec 2018 and was good for almost a year and then started having headaches so bad she can hardly stand up when she has them. We have been back Gillete Childrens Hospital in St Paul, MN where she had her surgery. The one doctor we met with said she may need another surgery and a duroplasty put in but surgery was a last resort so we met with a neurologist who suggested riboflavin, magnesium, and physical therapy which is not helping so dont know what to do. Any suggestions appreciated.

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Post surgery, I started to develop head pain again. My MRI’s showed no creeping back of the brain compression at the foramen magnum. Does your daughter’s MRI show anything of a physical nature that could be affecting her headaches?

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Her MRI was noted as a little tight spacing. I dont think they did the flow study as nothing was mentioned about it. I am terrible and never know quite what to ask but the first thing the neurosurgeon assistant said was putting the duroplasty in may have helped this and it is a tough call to make if needed or not. I did call Gillette telehealth this morning and talked to a nurse. She has a tele appointment on the 20th but when she gets the headaches so severe we have to hold her up to get to where she needs to lay down. I dont want to be a hypochondriac and we normally dont do a lot of doctoring unless it is gussing blood but I dont think she should have headaches everyday either.

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Okay, so the MRI does not show any compression at the juncture? I am going ahead with that premise and talk about what I had to do with head pain that emerged and re-emerged after my own surgery. This pain was not directly related to the physical manifestation of Chiari but to how my brain responded to the years of compression and strain.

First, I had do do a lot of scar management immediately after surgery. To start with assessing something that is relatively easy to treat might be a good place to start. Rule it out or treat it then move on.

Second, according to my understanding, my brain had developed difficulties with processing information about my head and neck. When the brain cannot make sense of information, the brain forms the sensation of pain so that you take notice of it and do something about it. Unfortunately, I did not know what to do as medications, massage, exercises, then on to light, touch, hats and other things that should not cause pain started to cause a lot of pain It turns out that I had body imagery difficulties. Not the anorexia type of thing, but that my brain did not know where my head was in space. I did a lot of graded motor imagery exercises that I could do on the computer. They were crazy but they worked.

Thirdly, I did muscle trigger therapy for the head, neck, and shoulders. I had an excellent workbook.

Fourthly, I did motor control exercises for the neck and shoulder to return movement patterns to normal then on to increasing my strength and endurance. This was harder to do as I had to find someone to help me.

Fifthly, I did neurodynamic exercises to normalize the nerves coming off of my cervical spine. A pictured book for physical therapists helped me out here.

Unfortunately, I did not stumble on to the exercises in the right order that I should have done them and had to back track. It took along time, but working on retraining the brain’s function does. If motor imagery or muscle triggers are causing your daughter’s head pain there is something that can be done. I found that when doctor’s dismissed me and had nothing to offer, I knew that the solutions were outside of their scope. There sure are a lot of things that can go wrong with the body that cannot be fixed by surgery. Finish up with your doctors for sure, but know that there are other things that work if those are the issues that your daughter is facing.

Good luck to a parent struggling hard to find solutions!

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