Chiari Online Support Group

Chronic daily headaches after surgery


#1

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


#2

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.


#3

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.


#4

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.


#5

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


#6

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.


#7

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.


#8

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?