New member - decompression recovery and fatigue

Welcome Greetings and Introductions
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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.

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Wow! I am amazed at the amount of feedback and information. This is amazing. So many things to consider. Although somewhat overwhelming, I appreciate this. It is better than feeling isolated with no idea what to do next and wondering if there is anything more I can do for Megan. Thank you!

Yes Mandy, Dr Brockmeyer is Megan's neurosurgeon. I did not realize how lucky we are to be in SLC at first. Our support network is here, we are 10 minutes from Primary Children's Hospital, and we knew we had to do something ASAP because her symptoms were scary. We have had nothing but positive experiences with her NS and PCP. I can only imagine how difficult this would be otherwise.

We are only in the early stages of figuring out if Megan has EDS. She got a referral for genetics, but we are still waiting to hear back if they will see her. She had diagnostic tests - her flexibility and joints meet the criteria, but her skin does not. We have a friend who works in genetics (out of state) - he says they rarely do genetic testing for EDS/hypermobility, but I still can't shake the feeling that this is somehow related and intend to continue to pursue.

The only medications Megan is taking now are Motrin and Tylenol (and not every day). I am interested in additional testing for vitamin deficiency. She craves carbohydrates, but I try to make sure she gets plenty of protein and vegetables. She has been unusually pale throughout this whole ordeal (more pale post surgery).

Regarding sleep, she is a restless sleeper. She twitches/moves throughout the night. And she has crazy vivid dreams that she can remember every night. This is not new (same before surgery). Sleep testing is intriguing.

I am uploading some pre-op and post-op MRI images. I am not sure if I picked good/representative images... I picked the ones that looked good to my untrained eye.

Thank you all for your responses -so glad I decided to post something here!

Andrea

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Hello

Glad to hear that your daughter's Chiari was caught relatively quickly and that you are well on top of things. By all means other testing and avenues should be pursued to rule out other complications given your daughter's findings. All sounds good. Please also keep in mind that Chiari surgery, while not a terribly long surgery, is still a major surgery with all the fall out from the surgery itself and the anesthetics. Both set a body (and brain) back and seven weeks is not a long time even though she is still a young girl. Pressure to go back to school and resume full activities with all the surrounding cognitive requirements can tucker a person out.

Good luck in helping her to regulate her activity levels!

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Meghan’s mom, I second everything Mandy said! I also think, in the future, that Chiari will be linked with a collagen elastin disorder/some Hypermobility disorder. I’m sorry Meghan is so fatigued. I would not push her to get back to school while she is like this. Some people are just severely fatigued after this surgery. hyper-mobile people do metabolize drugs differently too so like Mandy said that could be an issue. I say let it run its course and wait for her normal activities. I was not severely farigued after my surgeries, but I was super tired. I’m 6 months post op from my CCI fusion and I still can’t handle much. I went back to work full time at 3 months but not a lot of extra activities or socializing still.

Why did her NS not want to fuse right away? Does she have a soft bone disease? Osteogenesis Imperfecta?

Has she been tested for low B6? Vitamin D? Many of us-especially hypermobile types- have nutrient deficiencies. This could add to fatigue.

Jenn :slight_smile:

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Also, how long was she under general anesthesia for the surgery itself? If she was under for longer than normal, the fatigue would also last longer. My NS explained it that he expected one week of fatigue for every hour of sedation. My surgery was 5 hours and the fatigue lasted exactly 5 weeks and one day. It was a little creepy to be honest. I know this isn't as detailed and informational, but it surprised me! :D
XOXO

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Thanks for all of the replies.

I looked up the (pre-op) MRI reports and found the following: inferior displacement of the obex; odontoid retroflexion; CXA basilar angle = 124 degrees, BPC2 = 7.4 mm (although I think NS measured this during an appointment and came up with a different measurement). I am still wrapping my head around what all this means. NS refers to Megan as Chiari 1.5 (complex).

I believe the surgery was under 3 hours but I can't find that in the report.

I am intrigued by the potential causes of fatigue suggested here. I intend to do some research and talk to Megan's PCP if her energy level doesn't increase soon. Megan has not had any other conditions diagnosed besides low IgA. She had severe asthma when she was younger, but has apparently grown out of that. She has not been tested for a vitamin deficiency (although she is not anemic).

NS did not want to do fusion for first surgery because decompression alone might work (Megan is a wildcard). We are aware there is a potential for follow up procedures. He did not suggest a neck brace.

Thank you for all of your information - it is appreciated!

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Mom, I keep my fingers crossed she heals out of the fatigue and gets back to normal activities soon. Give her a hug from us and one for you too- I’m sure you have been through enough stress to bring down a cow. Jenn :slight_smile: