I was diagnosed with a meningioma on my spinal cord six years ago. It was found by complete surprise, I was getting an MRI on my back due to an injury. When the doctor came into the examination room to give me the results, I saw the look on his face and immediately knew something was wrong. I was advised to see a neurosurgeon right away. My spinal cord was completely compressed and eventually I would become paralyzed from the waist down among many other life changing issues if I didn't get it removed.
The first neurosurgeon I went to scared the life out of me. He said the tumor was facing my breastbone and because of the location they would have to remove one of my ribs and go around my lungs and heart to get to the tumor. In the next breath he said or we can do pin point radiation. None of these options sounded appealing to me, especially since I was not having symptoms yet!
I was really depressed and went for another opinion. The next neurosurgeon had a different approach that sounded less dangerous, but still it was going to be a major surgery and life altering. Of course there was a worry of being paralyzed still from the waist down due to the rare location of my tumor. I decided to do the wait and see approach which meant getting an MRI every six months to see if the tumor was growing. Since there was not a lot of room for it to grow, if it did get slightly bigger or if I started getting symptoms I would then go through with the surgery. I was prolonging the inevitable.
Five years went by and thankfully the tumor did not get bigger, however I started getting numbness in my legs. I was so afraid of tripping and falling over my own two feet. I was also afraid I was going to become incontinent, which was another symptom I was told I could get. I was in my 40's and was asked, "do I want to have this major surgery in my 50's"? The recovery was going to be brutal. Just the thought of it made me wince, so I decided to go through with the surgery and hopefully recover without incident.
My surgery was 7 hours. They removed 96% of my tumor, and removed my lamina T1-T4 (laminectomy). I had some complications after surgery and spent two days in ICU because my blood pressure was too low. My lower lungs collapsed during surgery ( they told me this was common because of the length of time I was under general anesthesia) In total I was in the hospital for 7 days and I was glad to go home.
I was very lucky to have feelings in my legs and did not have major physical side effects from the surgery. It has been almost two years since my surgery and so much has changed. I was a first responder before the surgery and I had to give up that career. I could no longer lift, pull, push and carry the way I used to. Sleep? What is that? I have not been able to lay flat and sleep in my comfortable bed due to the pain. When the weather is bad my pain is bad. Physical therapy, acupuncture, chiropractic care all did not help. I became depressed and felt absolutely useless. I was slipping into a deep depression and how could I when I have children?
The doctors in not so many words said it is all in my head because my MRI's showed I was healing. However due to the location of my surgery they had to not only cut bones and muscles but all the nerves that ran across my spine. I still have a spinal fluid leak and my migraines are still here. I was told the nerves may reconnect and I could gain feeling back. Some nerves may reconnect but not to the correct nerves if that makes sense. So here I am almost two years later, still in pain and I feel like I was just a check off the box in the doctors office notes.
I can completely understand why some people have taken their own lives because of the lack of pain management and being dismissed. My pain management doctor only wanted to inject non-FDA approved shots into my spine. Mind you these shots will not last forever and will require you to go back every two to three months. Then when that gets old they want to do an ablation which means they will essentially burn the nerves that are causing the pain to stop sending signals to the brain that I am in pain. That procedure lasts 6-9 months typically. So my question is then what? Oh yes, a spinal simulator would be implanted. Do you see where I am going with this?
I decided to take matters into my own hands. Who knows what I am feeling better than me? I did not want injections, useless pills like gabapentin. Have you read the side effects of this go to medicine for pain? It is a medication used to treat seizures! They promote it to help with nerve pain and for me all it did was make me gain weight. No relief from this medicine and why would it help! Doctors in the United States are afraid to prescribe opioids due to the "opioid epidemic". Why do politicians get to decide medical protocols over doctors? I read the rate of suicides have increased since the crack down on pain medicine. Then you have people that are so desperate to get relief they take to the streets and get a bad batch and overdose. Great job America!
I started looking into natural ways of trying to heal myself. I read every book I could get my hands on. Different herbs used for different ailments. My food choices became a priority. It was not easy, but everyday I would tell myself, "make little changes each day and see what happens". How could it be worse? Little by little I was feeling better. I started to lose the post surgery weight. My mental health was improving because I was no longer feeling useless. I made small changes each day and it was making a difference. I go every six months for follow-up visits to numerous specialists. My neurologist actually put in my medical file there is nothing else he can do for me I will see her in a year! I cannot wait for that appointment coming up in November. He will be in shock or maybe relieved, because I will not cry to him about the pain and mental anguish I had been going through.
Do you know what my biggest question is about major surgery or life changing surgery? Why is it not mandatory to have a mental health team in place for post-surgical aftercare? Sure some people may need physical therapy, speech therapy, occupational therapy, pain management ( which in my opinion pain management was useless for me ) but what about mental health. Surgeons and their staff are not equipped for the mental health changes that may happen. In fact, they miss the signs and dismiss your feelings especially if you are a woman. Sorry, it's true! I have seen men get more attention because their pain levels are so much lower than women. I have been told it's in my head, it's not that bad, etc.
I took matters into my own hands and started to advocate for myself using natural remedies. Of course using trial and error but I have found what works for me. I want to spread the word there is hope. You don't have to fight this alone. There are natural ways that make a difference. I started feeling like myself again. Something I haven't felt in a long time. I am not here to bash doctors. I am grateful for them. I just wish there was more empathy given to their patients. I am sure there are doctors out there that do just that. I believe I am part of the majority that did not get to experience that luxury.
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