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Hello, my name is Robert I am new to the group. I live in Mississippi. To be honest I have received some of the worst medical care that I've ever had in my life the last year. This includes my latest attempt to get my neck fixed. They were supposed to do surgery today. I canceled because I couldn't get any information about anything and it made me unbelievably uncomfortable. That plus innumerable errors in the back office. I had already spoken with mayo back in January about at least the second opinion. One neurosurgeon here wanted to complete my surgery based on CT and MRIS that are 15 months old. Mayo told me I need a CT new. Well I got the CT done as well as an additional MRI. The CT is already on its way by push. I'm picking up the MRI Wednesday to mail it in.
The surgery today was supposed to be a T1 through C7 laminectomy plus Fusion. No mention about the artificial disc replacement. I don't even know if they do it. I'm sure the surgeon knows about it. If you knew about a procedure somewhere else that would work better wouldn't you send them there?
I am in constant level 7 pain in my body. I also have obstructed defecation syndrome and chronic idiopathic constipation. I actually believe that diagnosis of cic should be ibsc because my main complaint is pain and that is the differentiator. I have always had problems with my stomach since I was a little boy. Somehow I think the neck issues really kicked it in. Could it be in Vagas Nerve related?
I presented in the ER here on November 17th because of fecal impaction. I have been told by my colon surgeon that if I don't get my peristalsis retrained through pelvic floor exercises and bio feedback training he will have to attach my small bowel to a colostomy bag that may or may not be permanent. If I decide to pass on the surgery he warns that I will face a lifetime of constant fecal impaction and pain. And the continuation of the daily meds that I now have to take for the condition . This includes linzess , Miralax milk of magnesia, three stool softeners, three Dulcolax laxatives, domperidone, and motegrity. Last but not least is the daily Dulcolax enema. I haven't had numerous occasions where after all of this, nothing happens. It is a nightmare and taking care of me takes a terrible toll on my wife.
I saw my gastric surgeon the first time after the ER visit and he looked at the CT Scan they did while I was in the Hospital, he said he wanted me to know that this is definitely not in my mind so don't pay attention to anybody who says it is. He also said it's very serious. He then added that he was surprised I was not writhing on the floor in agony right then and there. The CT also revealed early acute appendicitis. Apparently that has resolved by itself. I did a little research, trapped poop.
The pain in my stomach competes with the pain in my neck and morphed into pain all over my body. I have now been diagnosed with fibromyalgia. Taking Lyrica it is helping. GP wants to add Cymbalta.
Morning and short of it is I am faced with two devastating conditions. Don't do the neck and be totally paralyzed. I am well on my way already. Last May I went to Jazz Fest and danced. Today I cannot walk at all must use a walker. My hands are also totally numb as are my arms and fingers. I am not sure what has improved this lately, maybe it's the lyrica? I was not able to button a shirt or get dressed by myself. I now can get dressed by myself. I am now even actually putting on my own shoes and tying them. For the first time in Forever I actually cut my finger nails and now don't look like Howard Hughes.
Wanted to add a couple merely show me how messed up these illnesses are. I had an ultrasound a year and a half ago because the doctor suspected an AAA. Sure enough 3.4 CM too small to operate. Wait and see. I've actually had two CAT scans that have seen my stomach in the last month. I was amazed that there was no mention of an AAA in the first one or the second one. My GP thinks what I saw in the ultrasound was an anomaly. I have been worried about this for over a year and it wasn't even real or did it resolve by itself? That is the question. So that's early acute appendicitis that resolved by itself and maybe an AAA that resolved by itself. Four or five months ago I got rid of all supplements and cut my daily meds down from 23 to 11:00. I have CKD stage 3B. I was at a low of 32 egfr. Three doctors have told me it's a miracle that it's now up to 60. So I am out of CKD territory also, those 60 could be classified as early.
I praise the Lord that I have Plan F supplemental insurance and don't have to worry about medical care. We were destroyed by covid financially and now this. We both were forced to take early Social Security and that's all we get. We have gone through all of our savings and never have enough money at this point even to eat. Does anyone know if mail supports any financial assistance for travel and lodging? I do not need help with the medical procedures. 100% covered nothing from me in terms of money.
Thank you,
Robert
Replies to "Hello, my name is Robert I am new to the group. I live in Mississippi. To..."
So I always assumed my constipation, severe constipation Was a symptom of my degenerative Disc disease or fibermyalgia but come to find out it was a symptom of a gluten or wheat intolerance. I have not been tested celiac but I bet I probably will have it in years to come. I took everything, even the stuff they give you for a colonoscopy wouldn't break through my constipation. Until I figured out what the problem was and eliminated it for my diet, I also experienced widespread pain and flu like symptoms. I was a mess. Since I stopped eating gluten and wheat years ago my bowels are not completely normal however I've never been that constipated again unless I ingest gluten or wheat. I thought I would mention it because you never know. I am also used from C2 to T2. I had 4 prior surgeries before the large surgery at the University of Washington. Good luck and if you have any other questions please feel free to message me back.
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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?