January 4, 2017
Dear Friend,
This blog was written for my new internet friends who are on a similar journey looking for answers. Since I had my craniotomy to remove an epidermoid mass in the fourth ventricle, I felt on my own to figure out what to expect, other than the critical “call the doctor immediately” issues. What could I expect? Is this normal? I had to look online for answers of various types. Just as a reminder, this is a listing of my own experiences, remedies, and reactions. This is not a substitution to the direction of your own physician, for every case is unique.
Post Surgery ailments I experienced:
1. Headaches! Headaches! Headaches! This was the largest beast.—sinus, frontal and rear pressure, pain spikes to the temples, especially when changing positions. Initially the extreme pain came primarily from the neck muscles being separated and moved. Towards the end of the hospital stay, the internal headaches took the front stage.
2. Muscle spasms in various areas through out the neck, neck muscle pain and swelling all the way around to the sides of my throat.
3. Intense swelling in the back of the neck. I imagined laying on a banana that does not mush down. This made laying on my back uncomfortable.
4. Sciatic nerve issues with a lower backache and muscle pain down to the calf muscle on one side due to the immobility and the hospital bed.
5. Bruising on head, veins, forearms. One vein irritated me for over a month, another is still enlarged.
6. Difficulty swallowing, causing me to choke on water the first couple of days in the hospital. This was probably due to the breathing tube in me during the operation.
7. Hormonal shifts, small things made me want to cry. Even watching “Walker, Texas Ranger” even did this. Yikes, now that was bad.
8. Lightheadedness, my balance was off. As my cerebellum settles into its proper position once again, this original cause of my diagnosis is felt once more. The neurosurgeon said it is due to the irritation from the residual epidermoid cells as my brain shifts. He said the cells are not causing pressure and should resolve as I heal more.
9. Nauseousness. This could have been from medication or a symptom of the aseptic meningitis.
10. Senses:
*Sensitive to touch, especially with cold items. My body ached in my joints and muscles, yet did not have a fever. It just made me wonder if I was fighting the flu.
*Double vision in the right side
*Ear issues:
-Earaches.
-I heard my heartbeat from the inside of my ears when it was quiet around me.
-Sensitive hearing. Higher pitched noises, doors shutting, or even snoring reverberated through me.
*Overactive sense of smell. My husband put his deodorant on in the bathroom and I smelled it down the hallway in the living room.
*Overactive sense of taste. I made grilled cheese sandwiches with tomato soup. I only tasted intense salt from the grilled cheese and sugariness from the tomato soup. It totally turned me off to the favorite stand-by meal.
11. Tooth sensitivity. The tightness from the neck muscles affected how the entire bone structure of the head moves together including the upper mouth. This lead to an achy jaw and tooth sensitivity to cold occasionally.
12. fatigue
13. sensitive to weather system changes
Things I found that help:
1. Laying down for most of the day
2. Low stimulation, quietness, not much media
3. Drinking a lot of water
4. Get up enough to walk for a short period
5. Stay on the warmer side. Coldness tensed my muscles causing additional spasms.
6. Place icepacks on the top of my head, but not the neck muscles.
7. Epsom salt baths
8. Peppermint oil on the sides of my neck.
9. Proper nutrition. While I cannot truly see the difference from one day to the next, I figure it provided me with the proper building blocks to get better faster. Magnesium helps out the nervous system, bones, and muscles. Other minerals that came to mind were potassium and calcium. Some medications are known to deplete valuable nutrients creating symptoms, so read the side effect list to watch for this. I tried to make sure I had more green vegetables, tree nuts, and milk. Sugar was found to be detrimental to healing and possibly augmented headaches, so I tried to minimize that as well. For the first time in my life I craved a strawberry-spinach salad topped with walnuts. If it is healthy and your body is craving it, give it a try.
Medicines:
1. STEROID PACKS!!! (methylprednisolone pack) This had the best lasting results in and out of the hospital. I did have muscle and joint aches from the waste down on the first night both times I used this.
2. Ibuprofen, but do not use the maximum dosage too long, or it may cause additional headaches. But, you cannot start this until a little later due to the brain bleeding risks.
3. Tylenol, but being on the maximum dosage for two weeks caused headaches. (ibuprofen was better though)
4. Dilaudid (HYDROmorphone) intravenously in the hospital cut the pain enough so I could fall asleep quickly.
5. Physical therapy:
*Craniosacral therapy for pain management in my head and along my back. Very gentle and relaxing.
*Practice standing on one leg at a time for balance improvement, then some variations. I timed it.
*Therapist-advised mild neck muscle movements to help align the spine better for faster healing.
*Eye exercises. Even though I have a nerve issue resulting in double vision, I still feel eye exercises would help stimulate the nerve-endings to hopefully reroute connections. Therapists advised to treat this just like a lazy eye issue. I did back off of these to not overstimulate my brain until the headaches are gone.
*Arching my spine backwards to relieve contact between my sciatic nerve and spine.
*View my brain surgery like a concussion. The therapist conducted a symptom intensity survey on me and found I scored very high. While I was given a “green light” medically from the surgeon to do as I pleased, the therapist cautioned to maintain low stimulation and take it slow due to the concussion-like response. I thought I was still taking it easy, but I guess not easy enough.
Things that did not help: (Remember everyone is different, but this is how my body responded.)
1. Oxycodone—I broke out with insane itchiness all around my body. I used Benedryl to mildly take the itching down, but called it quits when I kept seeing “fruit flies” or black spots.
2. Valium (diazepam) and Flexural (cyclobenzaprine), muscle relaxers. Perhaps they cut down on the muscle spasms somewhat, but it does nothing for the main causes of my headaches.
3. Dilaudid (HYDROmorphone), pill form. I felt no effect using this at home. I asked my husband if they switched these out for sugar pills. The doctor did not want to increase my dosage.
4. Lidocaine Patch. I developed prolonged redness under the patch, so it was discontinued before it developed blisters.
I learned I needed to be much more assertive and keep an open mind to trying different things both in and out of the hospital. All of these ailments really happened and I should not have feared being considered a hypochondriac. I also learned aseptic (or chemical) meningitis is very common for epidermoid resections and cranial spinal fluid leaks were more likely to occur early on in the recovery. My aseptic meningitis was normal and not to be feared, just painful until it resolved itself, or with a steroid pack.
Some symptoms I experienced were due to the placement of the epidermoid mass, others were from the craniotomy on the back underside of my skull, cutting through all of the neck muscles. Fortunately not everything was experienced at the same time. Remember everyone’s body reacts differently to the surgery, but perhaps one of these ideas may provide relief in someone else’s recovery.
Until we meet again,
Regina
blueridgedrifters 