Summer II

I'm not sure if I mentioned in my last post that both my mom and dad were going to Indianapolis with me. My parents have been divorced for at least 25 + years. I think they realized when their first granddaughter was born that they would have to find a way to get along for birthday parties, etc. Once they both got married, then the four of them were around each other. I love that about my family. That we can all get together and get along for not only me and my sister, but my nieces and nephews. My step-sister's side of the family also does really well being around each other. Needless to say, I was not worried about them being in a car together for 4 hours. Somehow they always find things to talk about. 

Also not sure if I have ever mentioned my strong dislike for Indianapolis. If I travel, I prefer to travel north to the Chicago area or Michigan. I'm not sure what it is about Indianapolis but I get turned around every single time. It is also a trigger for me because that is where Joey was always at when he was in the hospital and where he had his transplant. The construction right now in Indianapolis is insane. I missed my exit when I got there and got turned around. Finally, I was nearby the doctor's office, but had to work my way through the roundabouts. We have roundabouts here in Fort Wayne and they are not this bad. Not to mention, when you don't know where you're going, you end up driving in circles (literally). My mom was in the backseat minding her business. My dad was keeping quiet to let me find my way. Finally, I was like if anyone has any idea which way to go, let me know. What was supposed to be a 2 hour trip, took about 2.5 hours. I got there a few minutes late. I hauled ass into the office completely forgetting the disk in the car with my imaging on it. I was definitely frazzled and I had to pee! I filled out the intake paperwork and went back to the room to wait for the doctor. He said he would not rush into a second surgery quite yet. He did say that my C6-7 disc had gotten worse overtime. He mentioned that the discs above (C2-3 & C3-4), could potentially cause problems as well. He showed me side-by-side photos of my MRIs. He did recommend that I get an updated EMG (nerve conduction study). I have not had one for about 3-4 years. He also recommended that I get a cortisone injection. Thankfully, I could get one that same day. The nurses got approval from my insurance. I got x-rays taken and waited for the next doctor to get the injection. I had to take my shirt and bra off and put on a gown. Otherwise, didn't have to remove anything below my waste or any earrings, etc. I was only getting the right side at C7 done on this day. They can't do both sides at once. You lay down on your back. They put drapes around the spot where the injection will go. The doctor uses some machine to see where the injection is going. He inserts the needle and numbs the area and then inserts the Cortisone injection. It didn't hurt, but it's certainly not comfortable. Total time was maybe 10-15 minutes. I walked back to the room and that's when my entire right arm/hand went numb, which is normal. I got my bra and tank top on but then I couldn't do my t-shirt. My mom was on the phone with my step-dad and so I had my dad slide my t-shirt over my head. It's fine, mom. I got it. She laughed. Now, they both start making fun of me. They thought they were funny for sure. We get out to the car and at this point, I can see my arm moving. I can tell my brain is telling it what to do, but I can't feel anything. Nothing. My dad was driving home. He made it very clear that we were not using GPS. He had told me at some point, you have to use common sense instead of the GPS. That's the problem though. I have zero sense of direction when I am in Indianapolis. We get out to the car, and my dad is trying to push the button on the trunk. I said, "what are you doing?" He said, "I was going to put you in the trunk." Funny. I sit down in the passenger seat and realize that I can't feel my arm to close the door. I said, "hello, can someone get the door?" My mom thought it was hilarious so she gets out and shuts the door. We asked my dad if he could stop and get food and we were told that no, he had to get home to mow. Well, that opinion was vetoed. We got onto 69 and then stopped and got McDonald's. I don't eat McDonald's unless it's a sausage, egg, and cheese McMuffin which is about two times a year. But, man, that fish sandwich and fries were delicious. 

If I sat still, I could tell the slightest difference in my right and left arm. If I was moving or typing at work, it felt no different. That tiniest bit of relief lasted two days. My injection in my left side was scheduled in two weeks. 

In the meantime, I met with my surgeon. That was last Thursday. I told him I went to the doctor in Indianapolis and got an injection and that I had another one scheduled in two weeks. I explained that this doctor said the discs above could potentially cause problems. He shook. his head and said it was very unlikely. Without knowing that the doctor in Indianapolis suggested an EMG, my surgeon suggested I get one. I am just waiting on that to be scheduled. Then, I will follow-up with him again. I asked the surgeon hypothetical questions. Such as, had I had a MRI a week before surgery, would he have replaced both discs. Thinking back, I am not sure he answered my question. He said that insurance wise, they only do MRIs once every 12 months. He said in fact, he had read an article, or publishing that "they" were thinking even 12 months was too much. He said, he did not agree with that at all. I asked him while the MRI showed my C5-6 disc was worse, what if it's the C6-7 causing all of the problems? He said possibly, but the C5-6 was compressing on my spine. Now the C6-7 is compressing. He then said in his ten years, he's never seen anything like this. He agreed with the doctor in Indianapolis that my arthritis has progressed significantly over the last few years. I always tell my parents I am a medical marvel. 

My dad and I went down to Indianapolis today for my second injection. He drove both ways. It took us maybe an hour and a half each way (he does drive 90mph). We got down there early so we stopped at Starbucks to use the bathroom and get coffee. It was my dad's first time at Starbucks! He only gets black coffee, so it wasn't anything to special for him. He said it was good and it tasted like Folgers. HA! 

The injection this time was a lot more uncomfortable. I got extremely nauseous. After he was done, they put an ice pack on my neck and the nurse got me a Sprite. I felt a lot better after that. This time, my arm never went completely numb. However, we got into the elevator and I went to push the button and my hand was shaking so bad. Unfortunately, that's common for me, just not that bad.

I'm home now. It will be interesting to see how I feel the next few days. I don't have a follow-up appointment with the doctor in Indianapolis yet. I'm hoping he will do a Zoom visit or telephone. I can't keep taking days off to drive down there.  Hoping the EMG gets scheduled soon too.

I forgot to mention that I asked the nurses what they thought about the roundabouts. They said it helped with traffic but didn't love them. The nurse said the city was on Letterman because of all the roundabouts. Apparently, it has the most in the US? I'll have to see if I can find the video. 

Join Me On This Journey, Will You?

Surgery. That's how I will be bringing in the month of February. I have never had surgery besides my wisdom teeth being pulled.

Couple of reasons why I want to document this journey for myself. 

1. There is a 60% chance I will end up in a study for a new disc replacement. I want to have a place to go back and refresh my memory on how I felt before and after surgery. I already know that should I get into the study, I will have follow-up appointments for seven years.
2. My job. I work in personal injury and I see my clients going through exactly what I am going through. If I can help someone else through the process of a disc replacement, I want to be able to look back and refresh my memory so I can give them as much useful information as I can. 
3. For me. I know I will need to write and get my thoughts out. 

Lets start from the beginning, shall we? 

According to my medical records, my first appointment was April 26, 2019. Out of know where, I began experiencing tingling from my shoulders down to my wrists (bilaterally). I recall telling a girlfriend at work that I was scared because I had never had this sensation before. You know when your foot falls asleep and you get that tingling sensation? That's how both of my arms felt. I don't recall having much pain at this point. My family doctor prescribed steroids. I honestly thought it would help. I had taken steroids in the past for pinched nerves. Steroids proved to do absolutely nothing. 

On September 3, 2019, I had my first MRI of my cervical spine.

I was referred to a neurosurgeon. There's a good chance if you ask anyone in my area which neurosurgeon to see, they will mention this doctor. 

The neurosurgeon was certain it was carpel tunnel. I, however, was not convinced. Carpel tunnel in both my arms and from my shoulders down to my wrists? He ordered an Electromyography (EMG). This test is used to detect neuromuscular abnormalities. You're stuck with needles so that an electrical current can be sent causing a twinge or spasm. When your arms already feel like they are asleep, this test certainly does not help. The neurologist who did the test told me before I left that she found no signs of carpel tunnel in either hand/arm. 

My follow-up appointment with the neurosurgeon was not what I expected especially from a doctor who is highly recommended. He confirmed I didn't have carpel tunnel. He reviewed the film from my MRI. He said my neck was definitely something to keep an eye on, but that I was too young for surgery. I asked him what now? In short, he said because I didn't have carpel tunnel, there was nothing more he could do. 

I followed up with my family doctor on November 18, 2019. The note from this visit states that the neurosurgeon had reviewed my film and felt that the issues I was having was not related to my neck, but carpal tunnel. However, he sent me for an EMG and surprisingly, it was completely normal. He goes on to say that I am frustrated and not sure where to turn next. 

I started my first round of physical therapy on December 10, 2019. Physical therapy turned into a place for me to go to simply get relief for 45mins. They would do anything that made me feel good. I recall being in the most pain during this time. Perhaps the symptoms were so new that I was unable to tolerate the pain as well as I do now. I had massages, my back cracked, tens unit, scrapping (helps reduce inflammation and increase blood flow), and cupping. My physical therapy ended up being derailed because of COVID, but to be honest, it wasn't helping. 

On March 3, 2020, I saw another neurologist. I won't go into detail about this appointment because it was nothing short of a waste of my time. The doctor walked in and said, "so, why are you here?" 

I was then referred to pain management. I essentially picked the provider I wanted to see based on what I had read from my client's medical records. I first saw pain management on August 17, 2020. Another appointment gone wrong. The appointment was at 8:00 a.m. The doctor appeared to be running behind already. He didn't really listen to what I was saying. He was quick to order pain medication (which I didn't even need because my family doctor had prescribed a nerve medication for me already). Naturally, I was then asked to give a urine sample since I would be taking pain medication. I didn't know beforehand that I would be required to give a urine sample so naturally at 8:00 a.m. I had no sample to give. I was treated like a drug addict. The medical assistant made it seem like I was not peeing enough on purpose. She told me to go sit in a room and gave me a cup of water. I then tried again. The sample was less than the first time. Do they combine them together? Nope. You start over. She told me to go sit in the room again and that she would be going across the hall to explain the situation to the doctor and his staff. It was as if I was a child disobeying. She brought in a swab for me to stick in my mouth and suck on. You had to get enough saliva on it to turn the swab blue. I'm not a doctor, but if I don't have enough urine to give, I am probably not going to be able to produce enough saliva. That was the case. I ended up swishing my mouth around and around spitting on the swab over and over until it finally turned blue. It was one of those moments where you don't even know how you got into that situation. Naturally, I never went back to his office. 

I then saw a new pain management doctor at a different facility. I had an epidural steroid injection into my neck on October 5, 2020. You are awake during the injection, but are heavily sedated with pain medication. It takes maybe 20-30 seconds for the injection. There is a lot of pressure in the area when it is injected. Not comfortable, but not unbearable. The only benefit I got from this was the relief I got from the drugs before the injection. 

After speaking with a few friends, I thought I would give dry needling a shot. I asked my family doctor to refer me back to physical therapy. I started my second round of physical therapy on January 21, 2021. The first round of dry needling seemed to really help. That was the only time I got relief. We tried it multiple times but physical therapy turned back into what will provide me relief for 45 minutes and we will do that. The therapist wanted me to work on strengthening. We attempted to lift some weights and workout. Very light weights at that. Each time I tried to workout, feelings that I was not aware I even had came out. I would immediately start crying. It was so upsetting to me that I had been lifting weights, running, and boxing and now I could barely lift a 5lb weight. For the first time in my life with me being 39 and my dad being 70, I was able to be as strong as him while pulling tons of leaves from my backyard to the front just two years prior. Now, I couldn't lift a 5lb weight without crying. I stayed late one night after therapy and had a roundtable talk with two therapists. We wondered if I started exercising first when I got to therapy and ended with whatever would make me feel better; we could "trick" my mind into not believing that whatever exercise I was doing was not going to result in more pain and discomfort. I didn't complete all of my physical therapy. I was discharged early for making no progress.

On April 22, 2021, I had a zoom appointment with another neuro doctor. Nothing came from that appointment other than what I already knew. 

Other treatment I tried was Non-Steroid Anti-Inflammatory Drug (NSAIDs) to help with inflammation. It seemed to help. However, I ended up with an ulcer. It was so bad I had my sister turn around and take me home as we were on our way to shop for Black Friday. It is my families tradition to do that with all of us girls. 

Since the NSAIDs seemed to help, it was suggested I use the topical form. I tried that but it didn't work. 

I did a few rounds of chiropractic treatment. He was more concerned about what I was eating that could be causing inflammation than anything. I'm not saying he is wrong, I just didn't want to be lectured every time about what it was I was eating or not eating. 

I tried essential oils. No relief. 

I went to the CBD store and started off with lotion. That did seem to help a bit. I ended up breaking out in a rash though. I got CBD oil drops to take and even gummies. No relief. Lastly, I tried a CBD vape. I have tried most of them that they have, all of which help with pain and inflammation. I have found one that seems to help some. Not much, but some. 

The only thing that has gotten me through is bi-weekly deep tissue massages. Albeit an expensive treatment, it is is so worth it. I absolutely love my massage therapist. It blows my mind that she can always tell what parts of my body need more attention. It's 75 mins of pure bliss.

What has not worked for me, may work for someone else. I encourage anyone going through any type of pain, to try everything you can. It's really trial and error. If it doesn't work, it doesn't work. 

Because my symptoms have not improved in almost three years, I have decided to proceed with a disc replacement. Not to be confused with a fusion. I have already went through the pre-screening for surgery and had labs drawn yesterday. I'll go into detail about the possibility of being put in a trial and what has happened since deciding on surgery later. 

Resistance

Last year around this same time, I was in physical therapy for my neck. I admit I didn't get much relief. It felt good while I was there but that was about it. There was one time, the therapist had me use a resistance band to do curls. I was in tears the entire time. It made me realize how weak my arms had become. I hurt so bad afterwards and I didn't even do that many curls. 

I spend all day trying to feel better. Whether it's using my massager, cupping, physical therapy, deep tissue massage, or prescriptions for pain management. I am so consumed with making sure I don't overdue it so I don't increase my pain which in turn is not helping because I am becoming weaker. 

The dry needling seemed to work for a few weeks. Then at one session, the therapist had me lift my head and hold it while laying down. It was very upsetting seeing how weak my neck is. That one move put me in so much pain. 

Last night I went to therapy. He said we're jumping right in to do everything that makes you feel better. He started with manual manipulation, dry needling, and even did some scrapping which is my favorite.  He ended with basically using his body weight and pushing on this specific spot under my shoulder blade. Besides the numbness and tingling in my arms, that spot causes me a lot of discomfort. I then rolled on my side and he was moving my shoulder blade around to get up under it and get to that spot. He again just pushed and pushed. When he asked me how it felt, I said, "oh, I could sit here all day while you did that." 

Therapists will do progress reports every month I believe. They have me hold my arms straight out in front of me and push down to test my strength. Every time (even last year), I get teary eyed because again, I have no strength. 

He did that last night and sure enough I teared up. He brought in weights for me to use while doing shoulder shrugs and I just looked at him like he was nuts. I am definitely dramatic during physical therapy. It makes me laugh and the therapist. Naturally, I was dramatic when he brought the weights in. I said I didn't want to do it. He said to try it and see how I feel. I did and it was exhausting. 

Because I am just not having any progress, he brought in another therapist that has been doing this a little longer. My therapist started telling her my resistance to any type of strengthening or exercise. For the next half hour or so I cried. We discussed how scared I am to do anything because I fear that it will cause more pain. We discussed working on things that will help my strength but doing those first in therapy and ending with manipulation, needling, scrapping, etc. Almost retraining my brain that if I do a, b, and c, I can then end with something that makes me feel good. She asked me to do shoulder shrugs throughout the day. She gave me a tennis ball that I can use to stand up against a wall and roll the ball over that spot under my shoulder blade. I was at therapy an extra 45mins. I appreciate them taking the time to figure out what they can do. I am trying everything possible to avoid surgery. I know it sounds simple - I am in excruciating pain everyday that is effecting my quality of life. I don't exercise anymore. I am not sleeping well. I hurt so bad so I don't want to go out and do anything. Why not have surgery? Who wouldn't be scared to have a disc removed from their neck? Why if it makes it worse? What if it's not any better? Of course, what if it does work? What if I do feel better? I just wish someone could tell me what to do. Rather I wish I knew what the outcome of surgery would be. It's just so scary. With the radiation down into my arms, I risk having permanent nerve damage too. 

Any suggestions or tips are welcomed.