*Disclaimer: this post has pictures of my incisions after the surgery, so don't read if you might get queasy seeing that!
Hey everyone!
I thought I would give a little update on my surgery and how recovery is going. I have had a couple people reach out and ask specific questions related to their own migraines & headaches, as well as ask to see pictures - so I thought I would just put a blog post out in the cyber world to maybe help someone else out along their journey to migraine relief. When I first had my consult with my plastic surgeon about the surgery, I remember going home and googling like crazy looking for someone's personal account of the surgery and recovery, but I never found anything! So now, I'm hoping that someone who was just like me will stumble across my little blog post and be more informed and hopefully more at peace with everything. I go into detail about a few things, for that reason alone.
Background on my migraines:
I have suffered with migraine headaches for 15+ years. It's plagued me for so long that I started becoming a version of myself that I didn't recognize, especially when migraines struck. I was constantly in pain or nauseated, chronically dehydrated, moody, losing weight, and so incredibly exhausted. When a migraine struck, I couldn't do anything but lay in bed with all the lights off, no noises, with an ice pack on my face and a bucket next to bed in case I threw up. I sought help from a couple neurologists in the Houston area and thankfully found one who listened to me and truly cared about making my life better - Dr. Pamela Blake. In the past, I had tried everything - preventative medications (10+), pain medications & muscle relaxers, diet changes, relaxation techniques, chiropractor, acupuncture, herbal remedies, massage therapy, etc. And nothing worked. After finding my current neurologist, I tried multiple rounds of Botox injections and trigger point injections in my occipital nerve, neither of which worked. Dr. Blake diagnosed me with chronic migraine headaches and occipital neuralgia, which is when the nerves that run through the spinal cord up through the scalp (the occipital nerves) are inflamed. Symptoms include: throbbing pain that starts at the base of the head and goes to the scalp, pain on one or both sides of the head, pain behind the eyes, sensitivity to light, and tender scalp. I had all of the above. About a year ago, I started contemplating surgery specifically to reduce occipital nerve inflammation, but I wasn't quite ready to take the plunge. My migraines continued to get steadily worse. I even told my neurologist & Eric that I felt like I was surviving on a daily basis, not living. Flash forward to a follow up with my neurologist with me so physically and mentally tired of the pain, that Eric and I said, "let's do the surgery".
The surgery:
Posterior greater and lesser occipital nerve decompression surgery. Sounds daunting, right?! For the past 10 years, my neurologist and a plastic surgeon in the Houston area have been working together on researching occipital nerve decompression and a reduction in migraines. And it's had such amazing results! Basically the plastic surgeon makes 3 incisions in the back of your neck (one in the middle and one behind each ear) and decompresses the nerves (relieves the pressure between the nerves and muscle) running through the muscle that have been so compressed by the muscle tissue that they are essentially "dead". I'm sure there's a technical term for it, but I can't remember what he called it. The muscles are impinging so much on the nerve that it's almost like all my nerves are pinched and causing daily headaches. The surgeon typically doesn't know how many nerves they will have to decompress until he gets in there, but once he decompresses them, the nerves immediately pink up and have blood flow again. And all this is done in outpatient surgery! My neurologist and plastic surgeon have done over 1000 people and studied them long term, and overall it has reduced patients migraine headaches by 70-90%, depending on how long each person has suffered with migraine headaches. Ya'll, this is crazy - the fact that we have this type of surgery to give someone a better quality of life is amazing!
Pre-surgery:
So about 3 months ago, we had a consult with the plastic surgeon who performed my surgery - Dr. Carlton Perry. I owe so much to this guy. He may have given me a whole new life. I get emotional just thinking about it.
It was so weird to me that a plastic surgeon performed the surgery, but then I remembered Jackson Avery on Grey's Anatomy, who deals with nerves and nerve injuries - so then it made sense ;) Anyways, Dr. Perry showed us a slide show about the surgery, explained the surgery and recovery in detail, answered all our crazy questions (like when can I highlight my hair again), and did a quick evaluation of my head/neck. Eric and I got back in the car after the appointment, looked at each other and said, "this needs to happen". So we scheduled the surgery and I immediately started checking off all the boxes on my pre-surgical checklist - blood work, cardiac evaluation, stress test, and psych evaluation (basically they want to make sure your migraine pain isn't related to something from the past or stress/anxiety).
Day of surgery:
The day of surgery was terrifying. So many mixed emotions. Eric and I drove to the hospital and instead of talking, we just listened to a podcast to take our minds off of everything. We got checked in and made our way to the waiting room. My dad and Mimi met us at the hospital and my mom came later after taking care of Brady for us. They took me back to get hooked up to the IV, check my vitals, and change into a gown & very fashionable compression socks. I sang "Reckless Love" by Cory Asbury over and over in my head the whole time I was alone in pre-op. Eric came to say his goodbye about an hour later, then the anesthesiologist gave me a medication similar to valium, and just like that, I was out. Apparently I got super giggly and starting making jokes, but I don't remember anything after he gave me medicine through my IV and I said "man this stuff is good". See ya later, Brittney!
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Pre-incisions |
The actual surgery:
For the surgery, you have to be intubated, have a urinary catheter, and you obviously have to be placed on your stomach. They have to pump 4-5 liters of fluids to keep you hydrated. They also have to shave the hair on the back of your head (from about the top of the ears down). The surgery lasted about 5 1/2 hours. Meaning my surgeon had a lot of nerves to decompress. But long story short, the surgery went great! I had so much scar tissue back there that my nerves weren't able to function how they are supposed to. My surgeon told us later that the scar tissue is the body's response to the nerves being compressed and inflamed. My nerves were also completely white in some places and weren't even getting blood flow. Dr. Perry told us that he expected amazing results and he confirmed that the surgery needed to be done. Thank God! After performing the surgery, the surgeon puts a lovely pain pump in the back of your neck, which basically means that you have a tube going in one side of your neck that delivers pain medicine and a tube coming out the other side of your neck that drains the medicine into a giant bulb. Oh and you have to carry around the medication bulb and the drain bulb in a fanny pack. Fun stuff. Immediately post-op, I was placed in recovery and apparently didn't wake up for a little over 2 hours. Eric said my face was so swollen that I didn't look like myself, but thankfully the swelling went down after a couple hours. I had a giant mark on my cheek from laying on my face and because of the surgical tape. And my eyelids were so swollen that I couldn't fully see. I don't remember anything from post-op, except that I tried to go to the bathroom by myself, which no one would let me do, naturally. I got to go home a few hours after the surgery and apparently ate pizza & breadsticks with my family at home that night (don't remember that!).
Post-op & recovery:
Ugh. The recovery has been a little rough here and there. The pain was pretty bad at first and I was so stiff that I literally couldn't move my head/neck in any direction. My neck and upper back were sore and I couldn't get comfortable to sleep. It felt like I was laying on a pile of rocks - it still feels like that (because of my head being numb). I have to sleep elevated at least 45 degrees, which I hate doing, but thankfully my neurologist said I could sleep on my side while elevated after a couple days post-op. I had to take antibiotics for a week post-op and of course pain medications as needed.
The weirdest thing about the whole recovery is that my head is numb from the top of my head to the base of my neck, including the tops of my ears. It's so strange! I can feel pressure if I push hard enough, but other than that, I don't feel anything. I can still feel pain, especially at my incision sites, but when Eric puts neosporin on my incisions, I can't feel any of it. If I get an itch, I can't figure out where it's coming from, so I can't scratch it! I am also getting what's called paresthesias. Basically, think of your foot falling asleep and as it starts to wake up, it starts tingling and itching. Well that's what it feels like on my head as the nerves start to wake back up. I feel ants running, tingling sensations, burning, itching, and lightning bolts. It's painful at times and just annoying other times.
I think the thing I didn't expect was the nausea. I guess I just didn't think I would have any issues with it - but I get nauseous on multiple occasions during the day, and usually it's just random. I asked my surgeon about this at the follow up appointment and he said it's because the nerves by your ears are responsible for the nausea response, so as they start to come back to life, you get nauseous. It's the worst. Zofran has been my lifesaver.
Twenty-four hours post-op I got to shower and wash my hair. Thank God for Eric. He helped wash my hair because I couldn't hold my arms above my head. It was painful and I got so nauseous, and I think it took me like an hour to shower, but we survived! Also side note: I can only use baby shampoo, I can't use any hair product, and I can't use a hairdryer for 5 weeks post-op. It's terrible!! So I'm using Brady's shampoo right now and just letting my hair air dry, which is no fun at all. Five days post-op, Eric had the lucky job of taking out the part of the pain pump that delivers medicine to my neck. Meaning he had to literally pull the catheter tubing out of my neck. It was so incredibly painful. I will just leave it at that. Then the next day, my surgeon took out the tubing connected to the drain. Thankfully after that I was fanny pack free!
Here is the best part of this whole thing - I only had a headache for 48 hours due to coming off the anesthesia, but other than that, I haven't had a single headache. I know it's only been 2 weeks, but before the surgery I woke up with a headache and went to bed with a headache, so this is amazing to me! The surgeon said with all his patients, the headache rate increases after surgery at some point, but then steadily declines over the course of 3-4 months, so by a year post-op you have virtually no headaches.
Overall, I am feeling pretty good now! Obviously still stiff and sore, but I'm able to do more for myself now, which is a huge win. I've actually gone for a couple slow and short walks since the surgery. My follow up appointments have gone great and I'm recovering well! Very thankful for that!
Here are a few pictures of my incisions over the past 2 weeks.
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Day of surgery |
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2 days post-op. You can see the pain catheter on the right and the drain on the left. |
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6 days post-op. No drain or pain catheter! |
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9 days post-op. I can't get over how good my incisions look here! |
Included in my year long recovery: physical therapy for the entire year, no chemicals on my hair for 5 weeks, no lifting anything more than 10 lbs for 8 weeks, no running for 8 weeks, and off work for 2-3 weeks. I have to do range of motion exercises on my neck, do sensory and tactile exercises on my scalp, and use Biofreeze throughout my recovery as well. And guys, I have to take 8 different vitamin supplements recommended by the AHS (American Headache Society). I am now an old woman and carry around a pill organizer. On top of that, I have to take aleve for a year to help keep inflammation down. I have to go to frequent follow-up appointments with both my neurologist and plastic surgeon so they can keep close tabs on my recovery and progress. Basically, there is still a long road to go, but regardless, I am so happy with the outcome of my surgery and so hopeful for what is to come!
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First physical therapy session |
Thank you all for the prayers and the sweet messages. I can't even tell you how much it meant to me and my family. It's only going to get better from here!!