I was absolutely in shock when I saw my head and how long the incision was and how many staples there were along with what were supposed to be dissolvable stitches. I found out several weeks later that the stitches were infected and not dissolvable at all; Just one of the many errors made in my treatment.
Due to the fact that I had pain that the Doctor's couldn't explain, instantly I was labeled as a "problem" patient despite the fact that what I was experiencing has been documented in reputable medical studies and Neuro opthamalic literature. Migraines are common and so is jaw pain as your jaw muscles are cut during the craniotomy. It was the degree of pain that stumped the doctors.
I have learned that many doctors think inside of a box and if your case doesn't follow what they usually see in practice well then the patient needs a psychiatrist. I have never been more humiliated in my life in terms of my pain issues. I now have lost a tremendous amount of respect for doctors who think they are some kind of "GOD" because they have a degree in medicine! Yes, Doctors are highly trained professionals (some of them are) but they don't know everything!! Ok, enough with that issue because I feel myself getting anxious just writing about it. Now I have Dr. phobia and that's that.
I had my staples removed 14 days after surgery and surprisingly it wasn't that bad and only a few stables hurt a tiny bit to come out. My entire left side of my scalp was a weird kind of numb and still is just not as much, Everything on that side felt pulled real tight. I never had a face lift but it feels like what I imagine a facelift might feel like. I was never told that I would struggle opening my mouth due to the jaw muscles being cut, but that was the case.
My gait, balance and speech were in tact until the hospital re-admittance incident I had after being home for 10 days. I experienced the absolute worst headache to date and was rushed to the nearest hospital. After the incident my speech began being slurred and right sided weakness developed. I spent an additional 8 days in the hospital due to pain and MRI detected swelling.
With that behind me, I began at home physical and occupational therapy. However, I was really exhausted. My body just couldn't handle it and I don't think I got much out of it. I did get up and walk around my home but I was in no shape to do much more.
I had so many follow-up doctor visits initially and that just added to my exhaustion. Once those were out of the way I could just lay back and begin my recuperation. I do have some tips to get you through that time.
1) Don't push yourself!
2) You may feel well enough to start doing a lot of things, DON'T do it! Allow yourself to heal. You have had a major surgery and or had radiation treatment! Give yourself a break!!
3) Do not feel obligated to entertain company or return phone calls right away. I had many visitors and calls along with tokens of love delivered. I will be forever grateful to those who who were there and are still here for me. However, I sent thank yous as I felt up to it and I communicated via text, FaceBook and email. Sometimes I wrote out thank yous. Everyone was understanding.
4) Accept help! If someone calls offering to take out the trash, pick up your prescriptions, cook, do laundry, write out thank yous or help pay bills, etc., by all means let them assist you!!
5) Ask for help if you need it! Family and friends may not call with an offer but that doesn't mean they don't wish to help. Some individuals feel like they might be bothering you if they call.
6) Take things one day at a time as how you are feeling may change day to day. For example, I did not start having seizures right away and things changed once I did and adjustments had to be made.
Overall my first two months at home were chaotic and not easy for me! After the second month I decided to go to physical therapy, occupational and then the added speech therapy at a traumatic brain institute as advised by my neurosurgeon. I will continue my journey in another blog...
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