Things I wish I would’ve known..

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First, let me start by saying that my experience with a pineal gland cystic tumor can be just like someone else’s experience or completely different. The purpose for this particular post is to help those who are suffering and looking for answers. Before finding Dr. Shinanian at the Skull Base Institute, my family desperately searched for answers or someone who had experienced some of the same symptoms that I was.

So, with that being said, here is a list of specific pre and post-op symptoms along with a list of things I wish I would’ve know prior to surgery.

Things I wish I would have known before surgery…

  • How important walking is. Nobody stresses the importance of walking after surgery. As hard as it is to walk some days, it helps increase the blood supply to your brain and eases pain.
  • Another thing that I do not think is stressed enough once being released from the hospital is how much ice compresses help! They make such an improvement if they are done consistently. We have been doing ice bags (pictured below) on top of the head for 20-30 minutes for each hour.
  • I must be completely honest when I say that I wish I would have known how painful and trying the days following surgery would be. Although things get better, the first week is extremely hard.
  • It would have been nice to know that after surgery you cannot have any pain narcotics (trust me, you feel like you need some after surgery). The only type of pain medicine you can have is Tylenol. This is done for neurological purposes, so that they can closely monitor brain activity that most narcotics slow down.
  • 3-12 weeks is the normal healing period. I did not know that pain could last up to 12 weeks, even with signs of improvement. The brain is a very complicated computer that takes time to heal.
  • 1 year is the complete brain-healing period. I did not know this until after surgery. One year is the estimated time that your body completely recovers from the surgery. (Incision, skull, fatigue, etc.)
  • I wish I knew how I would be positioned during surgery. The positioning is so hard on your body. For those of you who know cheerleading terms, the doctor places the patient in a pike position (legs straight out in front of you with back up) and use a medication that paralyzes you to maneuver you in the way that best helps the doctor reach the tumor. This causes extreme stiffness and neck/back spasms after surgery.
  • Contrary to my belief, it is completely normal to have the same pain as before during the healing period after surgery. I woke up in ICU with the exact pain behind my nose and eyes and almost started crying thinking that the surgery did not work. I was wrong. Things are very swollen where the tumor has been removed and the same pain is expected to be there after surgery but I can reassure you that it does get better.
  • Brain swelling does occur post-op! There are times where I feel as if my brain is about to explode from the brain pressure. This is normal because of the way the brain reacts to trauma.
  • Nausea. Oh man, the nausea. I do have a very sensitive stomach but it would have been good to have a heads up that Dr. Shaianian actually expects extreme nausea after surgery. Unlike medication for pain, you can have nausea medication but in my case it did not seem to help much. For me, this nausea was a combination of anesthesia and pain.
  • You will have to sleep at a forty-five degree angle (aka “the wedge”) at least three weeks after surgery to prevent brain bleeding. It is no fun, but its better than the alternative. I have provided a picture below of the wedge that the hospital sends you home with to help with staying at an angle.
  • The pineal gland is responsible for producing melatonin, which is a natural sleep aid that our bodies produce. In most cases, when having a pineal glad tumor removed, part of the gland must come with it. This causes sleeplessness. Since surgery (11 days) I have had about 20 hours of sleep, where as before I was constantly sleepy because my gland was over producing melatonin.

Pre-op symptoms:

  • Extreme fatigue
  • Unexplained headaches
  • Nausea
  • Distorted vision (spots)
  • Pain behind bridge of nose and eyes
  • Sleepy all the time after a full nights rest
  • Blacking out episodes when pain heightens
  • Abnormally dilated eyes
  • Poor hearing

Post-op symptoms:

  • Sleeplessness (melatonin in pill form helps)
  • Loss of appetite
  • Stiff neck
  • Swelling of brain
  • Same pain behind bridge of nose and eyes (gets better with each day)
  • Blacking out episodes when pain heightens (more frequent post-op, but reassured by Dr. Shianian this is normal as long as it lasts no longer than 10-15 seconds and no fever)
  • Heightened sense of hearing and smell.
  • Taste buds dulled and some foods taste different. This symptom went away after about 6 days.
  • Stiffness from positioning during surgery.
  • Paralysis in fingers, face, and legs.

If you are experiencing these symptoms daily, I encourage you to seek someone who will be willing to help you. Not many doctors, especially in the southeast, want to recognize that this is an issue when it causes symptoms. I am forever grateful that Dr. Shahinian accepted me as a patient and helped me come closer to having my life back.

Also, please feel free to contact me at my email address that I check daily if you have any questions: aemontgomery1@crimson.ua.edu.

-Anna

 

Image

Example of the ice bag that I use on top of my head to help with swelling.

ImageThe wedge that you must sleep on 3 weeks after surgery to prevent brain bleeding.

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2 responses »

  1. You have been so kind to help others when you are still having your own issues. I just know that with your support system including Patti, you will find your way to total recovery. There are so many of us from Needlepointer Nation who are praying for you that God has you resting in the palm of his hand to help your pain. Hugs, Deanna Hartenberg, Rockford, IL

  2. Idk how I found this page, I think through a friend on facebook. I wanted to stop reading for a sec and comment on this post… I am truly amazed. You are the greatest example of an amazing human being. I look forward to reading all the way back to the beginning. I hope the healing goes well. I’m glad you kicked that tumors ass. You are such a beautiful girl. I’m sure nobody would know how truly strong you are by your appearance, but they do now! Not the strongest man or woman could handle what you have. I rarely pray, but for you I will. Even though I think you have all the strength you need. 🙂 I hope to see a speedy recovery. Keeping this blog will also help the psychological side of things. Stay strong, because I know you will!

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