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.

August 5, 2019: One Week Post Op Appointment with Dr. Perry *GRAPHIC IMAGES*

*This appointment we had so much information thrown at us, that I can’t guarantee I understood and remember it all correctly.  I am going to reiterate as best as I can, but please don’t take this as 100% facts because like I said, its based on what I understood at the time*

My head is very numb. From the neck all the day to the very top. I feel kind of a pressure headache on the top of my head/temples. It feels like my ponytail is too tight, but I don’t have a ponytail in. However, this pain is like 1/10. This is the first time I have ever written in 1/10 pain in my headache log. The areas on my neck are also very tender to the touch.

Dr. Perry started off by removing the JP drain in my head. I was dreading this, but turns out I am completely numb so I didn’t feel it coming out at all.  We then sat down and looked at the pictures he took during surgery and he explained what he found and what he did.  He told me he had to decompress 25 nerves on the greater occipital nerve, the lesser occipital nerve, and the dorsal nerves. Ill post this picture again as a reminder of what the nerves at the back of the head look like and how they travel.

-Occipital Neuralgia is when the Occipital Nerves are damaged or pinched causing constant pain along with lack of blood flow and oxygen. He never did an MRI prior to surgery because first of all, an MRI won’t really be able to detect this.  Instead he knew I had it based on my history and symptoms and the treatments I tried that failed. This could be caused by injury, but also by a person’s anatomy plus inflammation. Nerves are supposed to be on top of the muscle in the subcutaneous fat, but for some reason for me they are below and as a result get compressed as they travel through the muscle. To fix this he needed to make an incision through the fascia and peel back to see the nerves. Think of a banana. He needed to pull back the rigid tissue (the peel of the banana) to see nerves and get blood flow. He said when he opened me up, many of those nerves were white because they were not getting blood flow or oxygen. The moment he decompressed them they started to turn pink. This is a good sign for successful healing. Some nerves were slow to pink up, or were white-pink-white indicating more compression. These will be slower to heal and will cause more burning, irritation, lightning bolts, sensitive hair, chills, itching, and the sensation of ants running as the nerves regenerate.  He also told me that I will struggle more with healing as I am so thin and nerves love fat. When the nerve is where it is supposed to be, the subcutaneous fat is laying on the nerve.  When there is less fat to cushion these nerves, whenever my head gets touched the nerves will be more irritable and as a result will be very sensitive to the touch. He told me to continue working hard to gain weight, as he told me months prior to surgery.

-We continued to look at the pictures from the operation and he pointed out a nerve going to the ear that was white.  Many people with migraines vomit. I get nausea, but I never vomit. He said that makes sense because the damage to this specific nerve causes nausea, dizziness, vertigo, ringing in the ear, pressure/pain in the ear canal, etc. but not vomiting. All of which are exactly my symptoms.  He told me as I heal and as the nerve recovers, it may send erratic signals that will make me nauseated, dizzy, etc again. He said this nerve was very compressed and not receiving much blood flow.

-Certain nerves he found were completely flat because there was so much pressure. He had to open the pathway bigger so the nerve could get through. Immediately it turned red with increased blood flow.

-Some nerves were like an hour glass, wide-pinched-flat. This shows that not only the electrical connection needs to be fixed, but also the architecture of the nerve. For these ones it will take longer to heal and as a result my recovery will be tougher.

- Some of my nerves were encased in material that was pinching off the nerves. They are studying what exactly this material is, but they have found that it is a unique inflammatory reaction caused by the nerves. When the nerve gets squeezed or injured it lets out an inflammatory protein and the body tries to wall it off with that material. Like a scab, however this inflammatory buildup is actually hurting me and not protecting me. So, he removed it.

-It is clear that my nerves were injured at some point in the past, potentially from a car accident years prior that gave me whiplash. He explained that the treatment of an injury to a peripheral nerve is to leave it alone or rest it. If you pinch a nerve in your arm, you get a sling and are told not to use it for 6 weeks and to take an anti-inflammatory. In my case you can’t rest that nerve because it is going through the muscle and anytime I move my head, neck, or shoulders it contracts the muscle and pinches the nerve that wants to be left alone. So, he “tunneled” through the muscle leaving an opening around the nerve, so that when the muscle contacts it wont pinch the nerve.

-He said Occipital Neuralgia is a mechanical problem and there are no medications, creams or injection that will fix it. The longer those compressed nerves are left starved of blood and oxygen, the less the success rate of this surgery because nerves become permanently damaged. The rate of success drops significantly at the 10 year mark. In November it will be 9 years since my sudden onset of pain.

-Moving forward I start my vitamin regime. I need to do regular head massaging and hair brushing to wake up and stimulate those nerves, as well as neck stretching and heating as my neck is very stiff and needs to increase range of motion. I will be numb all the way up the back of my head because that is where those nerves travel to, but this numbness with lessen over time. In a couple weeks I will start seeing the clinic’s Physical Therapist to focus on range of motion and stretching exercises. I also can't lift/pull/etc anything over 10lbs for 3-6 months. Because of this, my parents coming for an extended period of time is the only reason I was able to get this surgery.

I have a long road to recovery. What are the nerves going to do? Will they behave themselves as they wake up? Will they get too excited and I’ll need medication to control the pain and symptoms? The next 12-18 months will be unpredictable, but I am very excited to have some hope.   

Surgery Photos: 

Area 1) In this picture you can see how the nerve travels down through the muscle due to my weird anatomy (it is supposed to be on top of the muscle). You can also see how flat it is from years of being compressed.

Area 1) This is the same area as the first picture after the surgeon pulled back the muscle and tunneled through to open a pathway allowing the nerve to get through. Notice how it immediately starts to turn pink from the blood flow!
(The brown is from electrocauterization that the surgeon used to seal off blood vessels)

Area 2)  This nerve is encased in that material of inflammatory proteins that the nerve lets out after injury.  It is removed as it is actually causing compression of this nerve.  

Area 2) This is the same area as above with the inflammatory protein removed.  As you can see the nerve is once again very white and going through the muscle, so he has to open it up. 

Area 2) Here is the same area, but after the surgeon "tunneled" through the muscle to make room for the nerve to not be pinched every time the muscle contracts. Notice the fresh blood flow here too!
(Again, the brown is from electrocauterization that the surgeon used to seal off blood vessels)

Area 3) Peeling back "banana peel" to get at compressed nerves.

Area 3) From white to red with fresh blood flow. Still a lot of white in the area where the nerves had more compression. These areas will take more time and be more difficult during healing, causing more pain and sensation,

Kinley's first look at my incisions

Days following surgery

I honestly cant believe how good I feel.

I woke up with no neck pain which is bonkers. The back of my head is completely numb which is obviously an odd feeling, but it doesn't bother me. I was sent home with a pain pump inserted into my neck, but also a prescription for a large dose of Hydrocodone to keep pain under control. After a few days I dropped this Hydrocodone dose to 1/4 of what he prescribed me because I honestly didn't need it. My head was tight, and there was a small amount of discomfort around my incision sites, but it was incredibly low compared to the discomfort I normally dealt with. I felt like a million bucks and Shaun and my parents would scold me to go to bed and rest. The problem was that I haven't felt this good in 9 years so I wanted to do everything. I wanted to clean, I wanted to go outside, I wanted to get on the floor and play with my kids.

I let Kinley come up and visit me 2 days post-op, I just kept my hood up so she wouldn't see my incisions. I wasn't going to let Emmett see me until I got the pain pump removed as he was still breastfeeding and I wasn't sure if he was still interested. I pumped and dumped for that first week when I had the pain pump in.

 

My parents came a few days before surgery to help. They were an absolute lifesaver, especially as Shaun went back to work. They entertained the kiddos as I hid in my room. They kept the house clean and made meals. My dad would make me veggie smoothies and bring freshly made coffee with my morning porridge, and mom would make snack plates that only a mom can make so perfectly. I (as well as my family) was very well taken care of, and I know this made this week so much easier.

The first two nights I slept in the recliner in our room, however I struggled to get comfortable. The third night Shaun made me a little nest in bed that elevated my head with couch cushions. I slept way better, but due to the numbness in the back of my head, I felt like I was laying on a metal pipe. I was incredibly grateful for that cooling mask around my head.

Showering was a bit of a challenge as the pain pump was in a little purse that couldn't get wet. So Shaun would hold the purse while I showered. Then he took over the role as my personal nurse and would help me gently brush my hair and put cream on my incisions. 

6 days post-op Shaun was lucky enough to be forced to pull out my pain pump. I didn't feel it because I'm completely numb, but he still didn't enjoy the experience of pulling 12 inches of tubing out of my neck. I will spare you all the video, haha. Here is a picture of Winston keeping me company instead.