*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. |
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| 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, |
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