My name is Brooke, I’m 28 years old and I have CM1 with a 6mm herniation. I have what I would consider a more mild case of CM compared to others as I do not have a syrinx, balance/walking difficulty, numbness in my limbs or cognitive issues.
I was first diagnosed in Feb 2021 and at the time my symptoms were a 14+ day migraine, light sensitivity including blue light, pressure in the back of my neck, a throbbing pain in the lower back part of my head, dizziness and lightheaded-ness with standing and significant fatigue and brain fog. The brain fog and fatigue had been present for about the last year or so but I would write it off as being tired from working graves. I was placed out of work on FMLA as I was unable to physically do my job anymore and initially slept most of my days away struggling to manage the pain.
Fast forward to present day (May 2021) and while I’m still low energy I have more “good days” than bad. I’m definitely not at 100% but I force myself to go on walks or even to the gym when my symptoms permit me to. I find this helps me have more better days as opposed to when I stay in bed all day, but I do have to listen to my body and not overdo it as I will be stuck in bed the following day if i push myself too much. My head still hurts all day every day but the pain levels vary. Same with light sensitivity- when I was first diagnosed I almost ALWAYS had to have one eye closed because it physically hurt too much to open them. Now I wear sunglasses a lot and can fill a sharp pain in my eyes when light hits them from certain angles but I function a little better. I still get dizzy and light headed when I stand but not as frequent as before. I found no relief from pain medicine so I stick to rest and ice as my sources for pain management.
That brings me to the main goal of this post, I have surgery one week from today, 6/7/21! I’ll be having foramen magnum decompression with suboccipital crainectomy, C1 laminetomy and duraplasty. I’m not nervous about the surgery itself but I feel completely unprepared for the recovery! I have no idea what to expect, what to pack for the hospital, what to wear home, what to wear around the house after surgery, how to sleep comfortably, etc etc. As of right now my surgeon expects me to be hospitalized 2 days with the first night in ICU. This will all depend on how well I’m recovering by the third day, of course. I’ll have someone with me 24/7 for the first week of my recovery & after that someone will be with me all day other than at night 4 days out of the week. I’m wondering if anyone who has had the surgery can offer any tips that helps with recovery that maybe they wished others had told them? Absolutely any advice is welcomed and appreciated! thank you in advance
Hi! I was 33 years old when I was diagnosed. I had the same surgery you are having. The one thing that I wasn’t told and wished someone had warned me was that you could have major depression following this surgery. I was hit hard with depression pretty quick following my surgery. I asked the doctor about it at my 6 month checkup and he said that depression definitely can be a side effect of this surgery but it wasn’t really something they talked about much. I am 8 years post-op and I still struggle pretty bad with depression. I am now in three different meds for it. But I will say I am a totally different person, for the better, than I was when I before my surgery when I was so sick all the time. I wouldn’t go back and not do the surgery is what I’m trying to say. I had very similar symptoms as you and I did really well (besides the depression) with the surgery. I wish you all the best and will keep you in my prayers this next week!
Brooke, Hi. So, I had the same surgery in 2018 at age 57. In fact, two weeks prior to the decompression a VP shunt was placed.
So let’s talk about the decompression, to be totally honest I was surprised at how little discomfort I felt immediately post op. Surgery was done on a Wednesday and was discharged on the Friday. I did however have pain from both sides of my head from the positioning and clamping for the operation. Both sides were tender to the touch for a couple of weeks.
Now, try to find a decent pillow for when you come home. Sleeping was no problem, but a Dr did pre warn me that neck pain would be an issue on waking. I found my neck to be extremely stiff and painful after sleeping in the same position. My only way to combat that on waking, was gentle movements to combat the muscle tightness. I did after a few weeks find a really good pillow that I still use today. If you go into Amazon and type in Chiari or Zipperhead pillows, you will see quite a few and will be able to get one to suit your needs. Before finding my pillow, I found that the flatter I laid with some soft neck support was the most comfortable for me.
So in conclusion, the surgery and recovery time I personally found easier than the shunt placement. Other than normal post op restrictions, it was business as usual when I came home. The muscle pain in waking did however let up in about a week. Keep you incision clean and dry (apart from washing your of course). I had the usual fatigue that comes from major surgery, I had and still do, have a great support system. In fact, my grandson then age 12, stayed with me during the day while my husband was at work. I tell you that because we both just kicked back, munched goodies and binged Netflix.
Major surgery takes an incredible toll on the body. Listen to your body, sleep when you need to and admit to yourself and your support system that there will be times that you just ‘can’t’ do what you normally would be able to.
The decompression is no joke. But God made your body to be an amazing self healing machine. Good luck with your surgery and I hope that I may have been of some help.
Thank you so much for your response! I went ahead and got a support pillow like you suggested I’m so glad you had a good recovery and you definitely made me feel more confident going into mine!
Thank you for the response and prayers!! It means so much! And I am so sorry you’ve had to go through that. I’ve struggled with depression in the past and it is so hard. But I’m glad you are able to see the positives and the surgery was worth it to you! I shared your experience with my support system so they can help look out for me as well
Hi, I hope the surgery went well! Praying for a good recovery for you. The pillow is key, one day at a time. I made progress each day after surgery and it was the best decision, I am so much better now and turning 42 soon and couldn’t imagine if I hadn’t done it. I cant wait to hear how you are. Thoughts and prayers are with you.
By now you will have gone through your surgery. I’m also praying for your recovery. My Chiari conditions were very similar to yours except I only had 1mm herniation. Despite that, I was close to completely paralyzed and brain dead by the time I had my decompression surgery.
As far as recovery, my neurosurgeon told me that Central Nervous System recovery is not like the healing process of muscle and bones, etc. He told me it was more like a ‘roller coaster;’ you will have a few good hours - highs - and then plummet back into initial bad symptoms. Hopefully, the good highs will eventually get longer and longer with the icky bad original symptoms of Chiaris will become less and less. That’s what happened with me. By the time I had my surgery, my Chiari symptoms were really bad; I’m sure I was months away from death. I could barely function.
Then, a couple days post - surgery, I had my first 2 hours of pure ‘normal;’ no Chiari symptoms at all!! I remember those first 2 hours of full recovery so well because I had not felt pain-free and fully functional for years and years. It was glorious! Unfortunately, after 2 hours, I did indeed plummet back into old symptoms for a couple more days. But, the 2 hours of normalcy eventually grew to 4 hours… 6 hours… Until about 18 months later, I was up to 3 normal functional days with one day of plummeting back into old Chiari pain and paralysis. That’s where I’ve stayed for the last 9 years since my decompression surgery in 2012. This schedule smacks of permanence. I can mark out several year’s in advance; every 4th day is a ‘crash day’ where all the Chiari symptoms come back. Or, maybe they never went away. I also lose every 12th week - the entire week - to Chiari symptoms. Even my neurosurgeon couldn’t tell my why my back days are so extremely regular. I assume it is because Chiari’s squishes the brain stem. And, the brain stem is what controls your body’s cycles; biorhythms, sleep-wake cycles, menstral, etc… Not everybody who recovers from decompression surgery has these recurrent symptoms be so regular. Chiarians all seem to be SO different in symptoms and recovery. Your initial symptoms didn’t sound that severe, so hopefully you will recover much more fully. Take care.