Questions for anyone who has had a FULL SPINAL FUSION

Hello! I have not had my entire spine fused, however, I am fused from C4-T3 and L3-S1 along with my L1 vertebrae being fixed via kyphoplasty due to a fracture I sustained from passing out at home due to my POTS. My doctor and I have been trying to get my insurance to approve a fusion of my SI Joints and. Injection of that fusion to the lumbar fusion just above it, however my insurance has denied me twice! I cannot imagine fusing my spine Al at once but I’m sure it was your and your doctor’s last option if it has gotten to that. My lumbar fusion was the most painful for me because it was the area that had deteriorated the most prior to the surgery. I had been doing radio frequency ablations on my facet joints for years and yet, I still had bone spurs, bulging discs, etc going into the surgery. I am so glad I have gotten the fusions that I have because before them, I was not a functioning human being and was living in pain 24/7. I still struggle with chronic pain and managing my pain is a full-time job. I hope and pray your surgery goes well and that your pain and other symptoms are relieved afterwards!

@jksawyers Hi Jack! You might get a response from someone who has had the exact surgery that you are going to have (I hope!), but you will definitely get responses from people who have had similar surgeries, in an effort to help you, just like I am doing now!
I had a T11 to L4 fusion last December. My surgery took eight hours and was a success. My pre-surgery pain is completely gone although I am still dealing with pain from the surgery itself. Lumbar surgery is the most painful because it is the weight-bearing part of our back.
One thing I love about the Mayo connect site is that there are so many different stories and so much information here that can help others. If you type in different words and different phrases in the search bar, you will find a wealth of information that I have found to be very helpful to me.
Wishing you the best,
Sherry

Sherry,
It’s been 8 months and you STILL have surgery pain!? I’m a bit scared of having this surgery after hearing input from people. I wish there were some words of encouragement. Can you please share more. What is your pain like now compared to prior surgery?
Thank you,
Jack

@jksawyers Hi Jack, the pain I have now is from the nerves the surgeon had to cut during surgery. I am taking Gabapentin, which helps immensely, and use an ice pack or heating pad later in the day. The pain is very focused across my back in the lumbar region. Nerves just take a long time to heal, and I can tell you that I am able to mark my progress weekly. And in answer to your question, the pain I have now does not even compare to the pain that I had before surgery. I have been back to working on my property, gardening, walking, exercising, for at least the last four or five months, and I have to keep telling myself how amazing it is not to be in so much pain.

I apologize if I missed it, but when are you scheduled to have surgery?

I will tell you that in my situation, I would do the surgery again in a heartbeat. My decision at the time was not hard because my surgeon explained that no matter how well I stay in shape and kept my muscles strong, gravity would continue to work on my scoliosis curve and that it would continue to get worse. The only way I could find relief would be to sit in the recliner with a heating pad and there was no way that I was going to spend the rest of my life like that.

Please feel free to ask questions along the way! I remember how difficult it was to find information on what to expect before and after the surgery until I found this site.

Best, Sherry

Thanks again Sherry. I have surgery in two days. I’m anxious, not as much about the surgery as I am about the fact I do not feel good. I have a urinary tract problem and I’m extremely constipated. I really would rather take care of these two problems first but they won’t reschedule my surgery. So, I leave tomorrow morning.
Another concern I have is that I have heard I won’t be able to bend over after the full fusion.
And why do you think it’s so hard to find people who have been through this type of surgery?
Lastly, I don’t like that they refuse to tell me what the pain control plan is. I currently take a medication that cannot be taken with narcotics, so I sure wish Mayo would share their plan.
Please tell me more about everything and your post surgery pain. Can you tell me where your surgery was done and if you are pleased with the doctors?
Thank you so very much for helping me! Jack

Hello Jack,

Most of my back is fused but my situation is a little different than yours.

I was originally diagnosed with Idiopathic Scoliosis at 9 years of age, and immediately began physical therapy. Unfortunately, my back continued to worsen, so in addition to physical therapy, I wore a Milwaukee Back Brace for 3 years during my adolescence. I thought all was fine after that, but my scoliosis continued to worsen. At the age of 19, I saw one of the top Scoliosis Specialists in Southern California, at that time, and I had a Spinal Fusion, with a Harrington Rod implant, from T2 to L2 . All was fine for 48 years and still is. ( I am now 67).

Over the course of the years, everything from my L2 down took a lot of wear and tear and I had a multitude of issues, including Adult Scoliosis due to degeneration. For the last 3 years, I was in chronic pain and could not get relief from the usual therapies and treatments. After a several consultations with specialists at various institutions, I chose to have back surgery with Dr. Fogelson, at the Mayo Clinic, in Rochester.
On Day 1, I had a Sacroiliac (SI) fusion performed by Dr. Cross, an Orthopedic Surgeon, at Mayo, who is a specialist in SI Fusions. On Day 2, Dr. Fogelson, a Neurosurgeon, performed a spinal fusion from T10 to my pelvis. Dr. Fogelson specializes in Scoliosis as well as complex Degenerative Spine Disorders. Both doctors were amazing!

My surgeries were 4 months ago, on May 13th and May 14th. Immediately after surgery, my chronic back pain was gone! I was in the hospital 6 nights and was fortunate to be accepted for Inpatient Rehabilitation where I stayed for 10 nights. I highly recommend that you request inpatient rehabilitation. It was a wonderful facility, where I did 3 hours of therapy a day split between Physical Therapy and Occupational Therapy. In addition, I had a team of medical professionals working with me towards my recovery.

I am so happy I had my surgery. I finally have my life back. Initially, I felt some pain at the surgical site, but it was managed and it was greatly reduced by week 5. I do not have any back pain, but my back does get tired still and I ice it several times a day.

You mentioned that you were concerned that you will not be able to bend your back. That will be the case, but in Physical Therapy they taught me a way to bend at my hips. You will want to use a Reacher and a dressing stick. As I am 5'9", with a very long back, it takes a lot of maneuvering to get into a car, but each day it is getting easier. At the recommendation of Dr. Fogelson, I bought a Bidet toilet which definitely helps with hygiene. You don't have to have one, but it makes it easier. You can purchase aids to help you wipe.

Regarding Pain Management, and your medication that does not allow you to take narcotics, I suggest you send a note to you surgeon's team expressing your concern and remind them about your drug conflict. You will be in good hands at Mayo. You can always request a consult with a Pain Management Specialist at Mayo. (My husband requested one while I was in the hospital.)

Where are you going for your surgery and who is your surgeon?

Let me know if there are any questions, I may be able to answer.

Sending best wishes for your surgery!

Nadine

@jksawyers
Wow Jack, I didn’t realize your surgery was this Monday!

I’m going to attach two pictures of the Dulcolax chews and suppositories that I used. I’ve had several knee surgeries over the years and Colace and every other laxative that was recommended to me did nothing to help. Dulcolax has a variety of different strengths and options and it can be confusing to find the right one, but I just want to share what worked so well for me.

As for urinary issues, you will have a catheter of course, and they kept mine in for a couple extra days at my request. I’m not sure what your urinary tract issue is, but the good thing is that you will be at the hospital for them to address things as well as possible.

As for bending, they will tell you no BLT! That stands for no bending, lifting or twisting. What I learned to do early on was, as my physical therapist called it, “hinge at the hip”. So it’s important to always think about keeping your tailbone to your neck straight as you bend over. As I bend, I just put my hand on my knee to support my weight and reduce any strain on my back and it has worked very well. It has become a habit for me as I heal and it’s really hasn’t been that difficult.

Your fusion is going to lock your spine into your pelvic bone, which will limit twisting, and bending after you’re healed, but on a positive note 😊, you will not be susceptible to Degenerative Disc Disease. That is a concern of mine from my L4 and L5 because my spine is fusing from T 11 to L4. That puts a lot more wear and tear and strain on my L4-L5 disc.

I must say that I am concerned about what their plan is to manage your pain if you cannot take narcotics.

Which Mayo Clinic are you going to and who is your surgeon?
My surgery was at the Phoenix, Arizona Mayo Clinic and my surgeon was Dr. McClendon and he was absolutely amazing! I cannot say enough good things about him.
As for the after surgery care, please remember that you need to be your own advocate. If you are hurting, you need to tell them. If you need something, you need to tell them. You know your own body and you need to let them know if something isn’t working or if you need something else.

I journaled my surgery on this site from the time that I was being checked in and getting my IV put in until a few months ago. The link is at the bottom of this message. I hope there’s some good info in there for you. Also if you send me a direct message, I’ll send you my email address!

I remember being a couple days before surgery and having so many things running through my mind, but I prayed about it and knew it was all going to be ok. OpsO is having his spine fused on Tuesday and Bernie is having his fused on Friday, and I will be praying for each of you!

Keep sending questions if you have more!

****I just edited this message because I just got home from walking around a lake today, with no pain I might add! And I saw what Nadine responded to you with!!!. She recently underwent surgery and is a great source of information. I agree with everything that she said!

Wishing you the best!
Sherry
https://connect.mayoclinic.org/discussion/l4-to-t11-spinal-fusion-for-scoliosis/?pg=1#comment-1174207

Hi Jack I had T4 - S1 fused 26 months ago. And I am doing really good. It takes a little time before you are allowed to bend 3 - 4 months. My back does not bend like you can't do a sit up because it won't curl. I hope that makes since. I am able to pick up things off the floor, and bend over and tie my shoes. I have very little pain now. Right after surgery was painful but they give you meds in the hospital. I went to inpatient rehab after 1 week on the recovery floor. I was in rehab for a week then home and physical therapy. By Christmas which was about 7 months after surgery I flew to Denver and was able to walk though the airport without a wheelchair ! First time in like 3 years. Now I feel like back to normal. Only when I turn or bend to much do I remember I can't. I was 58 when I had surgery my scoliosis didn't start till I was 50. Good luck

Hi Jack I just saw you may not be able to take narcotics, when I was in the hospital mostly during rehab my blood pressure was very low so they couldn't give me narcotics. So they would give me tramadol I don't know if that would be an option for you.

@jksawyers
Hey Jack, I’ve been thinking about you and praying for your successful surgery and healing. How are you doing?
Been a little worried that I haven’t heard from you.
Sherry