Appreciation Post

So, I’m feeling pretty emotional today in the best way possible. I woke up today without a headache (well, 0.5/10 pain which is basically nothing), and I can’t believe this is my life. Until surgery, I have never, not once, had a day this low in pain for 9 years.  I think of all the support I’ve gotten, and I know there is no way I would be healing this well and feeling this good without some people putting their lives on hold to help us out.

My parents, Bruce and Ruth have been a god send. They arrived to Houston a few days before my surgery with a one-way ticket and an expectation that they were going to be here for months. And they were. Its hard for me to let go of control of my kids and my home, but after surgery they took over and did everything. They loved and entertained the kids, took care of the house, and brought me food in bed. They alleviated any stress for Shaun and allowed him to continue going to work as usual.  It was an adjustment for me of course, but they figured everything out and my kids didn’t even care that their mom had disappeared for several days. Then they flew with me and the kids to Saskatoon for a month in September for a change of scenery before Shaun arrived. Again, they took care of everything. They also are coming back in December for another “shift” and for Christmas. I think they want this surgery to work more than I do.
 
Shaun’s parents, Gary and Cheryl have been absolutely incredible and I am so grateful for them every day. They dropped everything this summer and flew with us to the Mayo Clinic in Minnesota so that Shaun and I could go to appointments without having to worry about the kids.  In the fall Cheryl flew back to Houston with us after our time in Canada, and then Gary following a couple weeks later after Harvest was done. They continued the care my parents had given us, and took over everything so I didn’t have to lift or do anything physical, and so I could rest. The kids were so excited to have Nana and Papa there for so long, and my floors have never been cleaner. I am so thankful that I have in-laws who make me feel so comfortable, and I never feel like I have to host. That was especially true this visit when they were caring for me and my family in my own home.

Shaun. What would I have done in this life without you? I can’t even begin to thank you for always being there for me. You were with me when this started and have talked me through every bad migraine. You have not once made me feel any sort of guilt or that I was a burden. You have bent over backwards to make life easier for me and pushed me to do anything I needed to in order to feel better. You never complain and you always remind me of the good in our life when I am struggling to find it. You are just the most incredible human in the world and I can’t imagine what my life would be like if you weren’t holding my hand through it.

Kinley and Emmett, thank you for the hugs and the cuddles when I need them. Thank you for loving your mom fiercely even when she yells at you when you don’t deserve it. Thank you for being such good sleepers and for getting along so well.  Kinley has the softest heart and always whispers quietly that she is going to give me “medicine kisses” to make the owie on my head go away.

Thank you to all my great friends who have stayed great friends over the years even though my energy and motivation to text and stay in touch has been embarrassing. Thanks for accepting all my last minute cancellations on plans and not making me feel worse than I already do. To all the friendships I have developed since my migraines started in 2010, I hope one day you will see who I really am under that forced smile and we can build a deeper connection.

I am thankful for my home situation where I can stay at home with the kids and not have the stress of needing to work. I am thankful for my mental health as it is so uncommon for someone with such a high level of chronic pain to not experience anxiety or depression. I am thankful for my will to fight, even though many days I question it. I am thankful that we ended up in Houston and I somehow discovered one of the few surgeons in the world that studies and performs this surgery. Most of all I am thankful (again) for Shaun because he has always been by my side and has done everything in his power to help me get through each day.

Okay wow, I feel like I am accepting an Academy Award or something.

Thank YOU for being here and reading my rambling. 

xx

September 24 :: eight week update

My daily headaches continue to be pretty much non-existent. My neck gets sore if I don't take the time to rest it during the day, so our travel day to Canada was a bit tough. We woke the kids up at 3:30am and even though my parents were travelling with me (Shaun will join us in Canada in a couple weeks) and made my life SO much easier, K and E were tired and still wanted their momma. However, my discomfort was significantly more tolerable than any trip I've ever taken.

The biggest changes this week is the zapping has been more frequent and more aggressive. It isn't very painful, just makes me jump. Again, this is a really good sign because it means the nerves are waking up.

Brushing my hair is such an important part of my healing regime, but its been really hard to tolerate the last few days. My scalp is super sensitive. Before it was just sensitive near my incisions and at the base of my skull, but now even brushing the top and sides of my head makes me wince.  Before my surgery, both my neurologist and my surgeon told me they wanted me to gain weight.  The reason for this is that nerves like fat. Fat surrounds the nerves and gives them padding and protection.  They explained that when thin people have this surgery they often have a more difficult time with recovery because they don't have as much cushion around the nerve and therefore its more sensitive when you touch your head. Up until this point I didn't have much of an issue, but this week as the numbness in the back of my head continues to slowly wear off, I am noticing that massaging my scalp and brushing my hair has been harder to tolerate. Last week I got frustrated with this (especially because I was still only allowed to use baby shampoo which doesn't help a lot with tangling), so I went to my hairdresser and told him to cut it all off. And he did.

xx

August 5, 2019: Seeing Emmett for the first time

After a week of hiding, I think little man was happy to be with his momma.

August 5, 2019: One Week Post Op Appointment with Dr. Blake

*as with my appointment with the surgeon, I am writing this based on memory and my understanding*

I also had my post-op appointment with my neurologist today. She said Dr. Perry told her that things went very well. We went over things I should expect the coming months.

-        - Nerves heal significantly slower than bones. So be patient with myself and my body.

-        - Reduction of headaches can take weeks to months. So do not expect to go forward completely pain free. The nerves need to heal. Immediately after surgery pain decreases because of the pain pump but also because when nerves are operated on/are touched/are moved they shut down because they don’t like to be handled (that’s why the back of my head is completely numb), but this decrease in pain in artificial. As the numbness wears off but the nerves are not yet healed, the return of pre-op pain will return. Then there will be a gradual reduction over the following weeks which represents true healing.

-        - Pain to expect is incisional pain, muscle pain from tightness and spasm and from being cut through, then paresthesia.  You know that feeling you get when your foot falls sleep and then wakes up and you get tingles, pins and needles? This is the nerve responding to the bloodflow resuming and will indicate the nerve is starting to heal normally. I should start feeling this in the next few days as this is a healthy sign that the nerves are starting to recover.

-        - Dr. Perry explained the need to do regular scalp massage, and Dr. Blake explained this retrains my sensory nerves how to feel normal sensation and not just pain.

-        - She said normally it takes about 3 months for a person to feel a reduction in headaches, but full healing takes over a year.

-        - “Flare ups” can and will still happen from muscle engagement and stress as stress is found to be directly related to increasing inflammation. She again explained the importance of stress reduction. 

This graph shows my pain pre-op and how it dropped significantly after surgery. As those nerves heal the pain will return but slowly decreases over time. There are humps present as things like muscle engagement or stress happen and cause a flare-up. Over the next year pain will continue to return, but each time the severity of pain is a little less.

I asked her again if its possible that I have Occipital Neuralgia AND migraines. She said she doesn’t know yet, and we can only find out over time. We will do what we can to control the ON and then see what remains. She actually recently published an article called Emerging Evidence of Occipital Nerve Compression in Unremitting Head and Neck Pain which talked about the pathophysiology of how the situation happening on the outside of the head and neck can be associated with triggering migraine-like headaches. There is a connection between the nerves on the outside of the head and on the inside of the head. Anyways, it is super interesting and shows why lots of people like me think/are diagnosed with migraines because lots of the symptoms look like a typical migraine, however the actual issue is the nerves outside of the head. Once again, I am in absolute disbelief that out of the thousands of neurologists out there, I ended up in the office of one who is passionate about this area of headaches and actively doing research to better understand and look a new way of thinking about and treating headaches.

https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-019-1023-y or https://pubmed.ncbi.nlm.nih.gov/31266456/ if you’re interested in reading her article.