Hi there, I am new to this forum. My daughter Megan is 14. She had decompression surgery on 12/19/14 (craniectomy, C1 laminectomy, duraplasty, tonsil reduction). Seven weeks post-op and she is still fatigued (physically and mentally) - has anyone else had fatigue this long after surgery? Is this normal?
Background story - Megan had been having headaches for years, we were tracking them but not overly worried until there were other troubling symptoms in fall of 2014 (fatigue, nausea, dizziness, weakness in the legs). She went to an immunologist and had a lot of blood tests - but they could find nothing to explain the symptoms. She had an MRI on 11/20/14 (to rule out a tumor) and we were surprised learn she had a Chiari malformation. We had never heard of this and had no idea it was.
Her tonsils were herniated 25 mm, but no syrinx. Her neurosurgeon says her case is complex because the brainstem was also below the foramen magnum and she has other anatomical abnormalities (inferior displacement of the obex with deformity of the cervical medullary junction according to the MRI report... whatever that means).
Her symptoms were bad enough that she had not been to school for 3 weeks by the time we saw a neurosurgeon. I had done some research on the internet and understood the only treatment was surgery. Neither one of us wanted to wait for surgery, the symptoms were pretty scary to both of us, especially at bedtime. We asked about the potential for additional surgery - neurosurgeon said Megan was a wildcard. He did not want to start with fusion, he wanted to wait and see how decompression worked. Said we would know if it didn't work within 3-6 months. Megan is extremely flexible and we are trying to figure out if she has EDS - appointment with the geneticist is about a year out though.
Megan was not recovering as fast as expected (neurosurgeon said most kids should have bounced back by 4-5 weeks). He ordered a post-op MRI and said the surgery went well - could not have hoped for better results. He did not understand why Megan would still be fatigued, so Megan's primary care physician kept looking for other reasons. She had more blood tests 5 weeks post-op to look for reactivation of mono, thyroid, cortisol, anemia... everything came back normal. Primary physician said be patient and go back to school slowly. Nurse practitioner says fatigue is not one of the main Chiari symptoms and maybe we should get a different test for mono reactivation.
She is 7 weeks post-op and still fatigued. We thought she would be back to school full time 3-4 weeks post-op. We are trying to figure out how many classes she can handle a day without getting wiped out the next day. I feel like we had unrealistic expectations about recovery - and that information about recovery was hard to find and highly variable.
Some of the symptoms are gone (no more nausea, weakness in the legs). She has only had one dizzy spell post-op (last night). Her headaches are less frequent, less intense and in a different location (temples). But she is definitely still fatigued.
I am glad to find this forum. I don't know anybody else who has gone through this. I would love to know thoughts on how long the fatigue lasts after surgery.
