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Good morning, Jennifer,
Thank you for such a comprehensive and well thought out reply. I appreciate all of this information. I am so glad that you not only had a great experience at Mayo Clinic but were so impressed that you are now involved as a mentor in a chat group here. That speaks volumes.
For me, one of the most interesting things you wrote is that you were able to handle the pain of the surgery relatively easily. I have actually been reading this pretty often. That gives me great hope. Honestly, I am in so much pain all of the time and some of it at level 10, that I have a feeling the neck pain after surgery will not be as bad as some of the pain I have experienced. I have managed to get through that without any help other than CBD and THC. Pretty sure the same thing will happen here.
I am not sure about the fibro either, but it is interesting that Lyrica seems to definitely be helping. Like I said, the pain literally morphed from my stomach and my neck. It's like they joined as one pain, and then it just shot all over my body. I am very hopeful that neck surgery will take care of all of these problems, or at least alleviate them somewhat.
I know how important it is to manage your expectations of the outcomes in a case like this. The neurosurgeon looked at the old MRI and showed me how my spinal cord was completely compressed and almost not visible. He basically said this will never heal. Okay. However, with the right mindset and absolute determination, Miracles are possible!
When I wake up from surgery, the only thing I expect is that degeneration will be held in check. I don't expect Improvement anywhere. I do not expect less pain in my neck, I do not expect less numbness, I do not expect to be able to walk any better. I do expect NOT to be in worse shape than when I went in.
I recognize that even if you have the greatest surgeon and the greatest Hospital in the world, you very well may wake up in worse shape. I mean physically not the pain. So it is become incumbent upon me, especially since surgical outcomes for this are generally so poor, to make sure that I do have the best surgeon the best surgical team and the best hospital in the world. That is why I contacted Mayo. I want the best odds for success.
I am well along in requesting an appointment. I spoke with someone from the spine team who had me send in the CT scan yesterday. I'm sending them the MRI tomorrow by mail. They will then triage and I should be offered an appointment for an evaluation within 7 to 14 business days. The intake person also asked me if I had a surgeon in mind, but I don't know who the surgeons are. I would assume they will assign the case to the surgeon most qualified.
When I was originally requesting the appointment I did try to combine the bowel and neck issues but apparently they're totally separate departments. They have no availability for stomach issues right now. I am hoping that when I get to speak with the neck surgery team they will be able to address the stomach issues in relation to the neck issues.
Funny you should mention give send go. I actually had a campaign to try to raise $500 a month to cover all the additional expenses and got nowhere. I am 68 years old and I rode hard and worked hard. We were actually quite well off before covid.
I have probably lived 10 lifetimes in my short life, believe me. Somehow or other, I am still here. Somehow or other the good Lord has never failed me and has always provided what I needed even if sometimes help arrived in the 11th Hour. That's okay. God is a good teacher.
I spent most of my adult life teaching a form of karate that is actually a Zen path. 6 years of that was teaching in Israel where I was drafted. I was inducted into the zenlineage quite some time ago. I have all of the tools and a support system that should ensure that I have the best possible outcome provided if I have the surgery done with the right surgeon at the right facility. It is ironic that I was 1000% committed to being the best patient that the orthopedic practice here has ever seen. That was my intention. I have set that being the best goal in many scenarios in my life including karate and the army. I became one of the best as determined by willpower. I am very consistent in this. The wind was completely taken out of my sails last Friday but it's like there's a gale blowing right now.
Thank you again, for taking the time to answer me and my concerns. It goes a long way. I am actually keeping an eye on everything that happens with mayo. Keeping score if you will. So far we're at 100%. I am very happy with that! God bless you, Jennifer!
Replies to "Good morning, Jennifer, Thank you for such a comprehensive and well thought out reply. I appreciate..."
@hodinator Good morning, Robert. You have a great mindset for healing. Patients have real power if they believe that they will have a good outcome. Being a good patient goes a long way to build a relationship with the surgeon, and I think that is essential. Your mind set for managing pain is great. I had to do that also and calm my emotions about it in order to stay in control. All my life, I had feared pain, and the fear of it makes it worse and more powerful. You don't have to give power to your pain, and you can become your own coach. I had been practicing deep breathing to music to lower my blood pressure along with visualization of beautiful images, so I had a method to be able to lower pain a bit, and prevent escalating it with fear.
I had been dismissed by 5 surgeons prior to coming to Mayo who didn't understand that the pain I had all over my body was being caused by spinal cord compression, and none would help me. I was reading the published literature of surgeons I was interested in, and when I found a paper talking about leg pain being caused by cervical spinal cord compression co-authored by a Mayo surgeon, I looked up a term in that paper and found case reports like mine for something called "funicular pain". This is what I thought had confused a lot of surgeons, so I wrote to this surgeon at Mayo and asked to be his patient.
You're right. My experience as a Mayo spine surgery patient is the reason I am here on Connect, and I was asked to be a mentor. I chose my surgeon at Mayo because I knew he would understand my symptoms because his name was on medical literature that discussed similar symptoms. There is a little bit more to my story because I am an artist, and I was loosing my ability to hold my arms up to be able to work on my paintings. When we met, I asked Dr. Jeremy Fogelson if I could do some sketches of him to help calm my fears because I like things I paint, and I needed to like him so I could place my trust in him. He said yes, and posed for a couple pictures, and he offered to help me.
Here is the story.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
The other surgeon I was considering was Dr. Bydon. He is doing research on regeneration after spinal cord trauma and has had some success with that. Other patients tell me that he is also excellent.
https://www.mayoclinic.org/biographies/bydon-mohamad-m-d/bio-20147826
I recommend Dr. Fogelson a lot, and his bio speaks volumes about his accomplishments, and he is very personable and kind. He has praised me for being here on Connect to help patients.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624