Spinal fusion of C1-C6

Hello @viehberg25 and welcome to Mayo Clinic Connect. I think your question is so valid and I'd like to see members join you to share their experience.

Because of that, you will notice I have moved your post into an existing discussion on spinal fusions which you can find here:
- Spinal fusion of C1-C6: https://connect.mayoclinic.org/discussion/spinal-fusion-of-c1-c6/

Members such as @jenniferhunter @morkat and @atchastain may be able to rejoin this discussion to share more with you.

Based on your concerns, have you reconnected with your doctor to see what options you may have with regard to your range of motion at this stage?

Thank you Amanda. I have not yet contacted my neurosurgeon after my 10 week post op checkup this week. I’m letting the questions pile up first. I should also say I’m not yet convinced that I have a good post op neurosurgeon since he somewhat questioned the need to have had C1 to C5 spinal fusion surgery done albeit by a different surgeon in Florida where it happened. At the time I felt I had no choice but to have it done because of the circumstances. Now my post op checkup “mentions” that it might have been too drastic. Great just what I wanted to hear.
My range of motion is not good as mentioned, and I am exhausted at the end of the day for holding a posture that allows me somewhat normal vision of the horizontal. Is this it for the future?

I can't tolerate gabapentin, it makes me crazy. I'm currently using medical cannabis. Oral extracts, Topical, Bath salts infused. And I do Smoke cannabis. My recently stopped my tramadolol and realize that medication was making me crazy too. I'm very sensitive to meds so using medical cannabis has worked the best. I also take Soma, Cymbalta, Flexiril and Trazodome to sleep. I do a short exercise program that with all the PT I've had over the years for my neck seems to be helping pain and spasms. I've resolved that I will always be in pain and just have to learn to live with it and accept it. I also walk every morning at least a 1/2 hour whether I want to or not. I find if I don't I am stiffer throughout the day and have more pain. My pain is up to a 6 to 8. I also have fibermyalgia so I've gotten used to it.

@viehberg25 Hello. I would like to add my welcome too, as you have already met Amanda.

Fusions and disc replacement surgeries both have risks and limitations. There can be adjacent segment disease after either of the procedures, but with an artificial disc it may be a lesser degree. Another risk of the artificial disc is that the body can grow bone around it attempting to stabilize it. The ADR hardware can fail and become displaced, or the screws holding it into the spine can migrate or break. There can be immune responses to foreign materials in the body. I know this sounds like a lot of doom and gloom, but these are real complications that happen.

I think you are right to ask questions. There is some literature about spine surgeons reversing fusions and placing artificial disks, perhaps not for all levels of a multilevel fusion, but for some of them. There doesn't seem to be a lot of surgeons doing this, but you can search and find information. That would also be risks associated with a reversal surgery and careful consideration and multiple opinions should be considered.

Here is a link that I found to a case report.

Case Report
Reversal of Anterior Cervical Fusion with a Cervical Arthroplasty Prosthesis

Sekhon, Lali H. S MB, BS, PHD, FRACS
Author Information
Journal of Spinal Disorders & Techniques 18():p S125-S128, February 2005. | DOI: 10.1097/01.bsd.0000117545.88865.b9
https://journals.lww.com/jspinaldisorders/Fulltext/2005/02001/Reversal_of_Anterior_Cervical_Fusion_with_a.19.aspx
This might open up more questions, and it sounds like there are no easy answers. I'm sorry that you didn't have the opportunity to get second opinions when you were sent to emergency surgery after your injury. If you do seek other opinions for further surgery now, get the very best surgeon you can find, and it may be hard to find one who would be interested in a revision of your present condition. If you search medical literature, you can find names of surgeons who are authors and have studied this type of procedure.

Most of head turning is done by C1 & C2 with some help from C3 & C4, so I understand why you are having very limited range of motion after all of that was fused. Surgeries at those levels right under the skull require extensive surgical skill. If there is instability in that area under the skull, the risk of spinal cord injury is very serious. You can ask about that too, if your injury represented an extreme risk to your life at the time decisions were made for your emergency surgery.

What is your next step now?

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

@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?

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.

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!

@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

Good morning, Jennifer!

I hope you are well today.

Yesterday, I actually had a great day. I cannot remember the last time that happened. Motegrity finally arrived and it is already kicking in. I have zero stomach pain. My neck pain is still about a seven but I will take it!

I want to thank you again, not only for answering my questions but for sharing about your own story. I love that you were able to first of all recognize your fear, and then do something about it. You were very creative in utilizing your art background to help you overcome it. Use every skill in my power to overcome the fear and the pain itself. If I could get through this without any narcotics, that would be a blessing. That is my goal. On the other hand, I know that should I find the pain to be unbearable, temporary narcotics use is an option.

What you write is full of Vital Information, and like I said I am an information guy. I'm going to review all of the links this morning, but wanted to acknowledge your reply first. Both surgeons that you have recommended are interesting. I'm particularly interested in Dr Bydon because of his work in regeneration and that is where I will need to make the most progress.

I am so hopeful again. I called yesterday and verified that the CT scan had been received. I am going to a third party provider to pick up the MRI from last month and I'm sending it by Priority Mail today because they cannot do a push.

Do you think that I will be able to go for the evaluation be offered the surgery appointment and get the surgery done all in one trip to Mayo? They already have complete access to my chart where the majority of my records are. I am getting a report from my cardiologist about preoperative status. I've already done an EKG, a CT angiogram, and an echocardiogram. He may order a chemical stress test. I will know that today. After that, they should have everything they need to proceed with the surgery immediately. Nobody here has ever mentioned a nerve study. I'm pretty sure Mayo May order one.

I hope you have a great day! I will return later after I have reviewed everything.

Thank you, again, and God bless you!

Robert