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@hodinator Hello, Robert, and welcome to Connect. I see that you joined today. I am a Mayo spine surgery patient for cervical stenosis. Since you asked about funding for travel and lodging, Mayo does not do that as far as I know. I'm not a Mayo employee, so I can't give an official answer, but other patients have asked the question. You can ask about costs for care at Mayo and hardship. Perhaps start a GoFind Me campaign to raise money.
The best bet is to call the free Mayo Concierge service and ask about lodging for low income patients having care at Mayo. There is a place for patients having neurological care, but space is limited and can fill up. When I travel to Rochester, I like to stay at Candlewood Suites and have a little apartment with a full kitchen. The places closer to the Mayo campus with the Gonda building (where you meet spine surgeons) or the St. Mary's Hospital are higher priced, but all offer a Mayo patient rate. You can contact them now during your planning stage.
Five Ways to Contact Mayo Concierge Services
Phone: 507-538-8438
Live Chat: https://www.mayoclinic.org/patient-visitor-guide
Email: concierge@mayo.edu
Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
In-person in Rochester MN: Lobby hours are 8:00-5:00 Monday through Friday. Offices are located in the International Center in the Mayo Mathew’s Lobby, Executive Lounge on Mayo 5, Radiation Oncology Lobby – Desk R
If you are having spinal cord compression in your neck, that can cause problems with walking and an unnatural gait and problems with bowel and bladder function. Your arm issues as well may be related to the spine issues; basically any function below the level of spinal cord compression can be affected for nerves that service those areas. That would be a reason to explore surgical treatment for your spine before a GI surgeon decides to operate on you. Spine surgery could improve that and restore normal function again if compression is affecting those nerves. I'm glad you got a new MRI. Generally speaking, surgeons consider them current if they are within a year in my experience, but when the symptoms are severe, having updated imaging can be very important.
You might want to call the billing department at Mayo in Rochester if that is where you plan to apply for an appointment. It is my understanding that they do take the real Medicare and Medigap supplement plans that are F or G (depending on your age).
If you are accepted as a patient, Mayo can access the other issues you have with kidneys and GI , etc.
When you have spine surgery, anesthesia, and the opiate pain medicines cause a traffic jam in the colon. When I had cervical spine surgery, I found that I could tolerate the pain without pain medications, and I just relaxed as much as I could, and slept, and understood that pain was expected, and was now healing pain. It wasn't horrible. That was my experience, and you may be able to do that too. You may be able to eat only jello and liquids for a couple days before surgery so you can be empty going into it similar to preparing for a colonoscopy. All the presurgical body pain I had was gone when I woke up, and the pain that was left was from the surgical path. I also had surgery early enough to avoid nerve damage. Some patients wait too long and always have pain, but that is a question for the surgeon. Your fibromyalgia diagnosis may just mean that your doctor does not know the source of your pain; it could be coming from the spine instead, and sometimes that is tricky to figure out the source of the pain. It was in my case. I wouldn't emphasize that when you see a spine specialist. Let them try to figure it out instead.
I do think you were wise to cancel a surgery if you were not completely informed of what would be done. Do not place blind trust in a surgeon. They have to establish a medical need and understand why they are doing surgery. If they go in without a complete understanding, it could make things worse or not solve the problem at all. Your insurance (Medicare) also has to justify payment for the surgery.
Do you have other questions about travel to Rochester or about the campus? Do you have a specific surgeon in mind that you would like to see? Where are you in the process of applying to be seen at Mayo?
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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!