Doc recommends spinal fusion from T12 - S1.

I looked into Back in Control...thanks! FYI the author has a newsletter. I have reviewed the abstract link as well. I appreciate this support group's post. I am learning so much about spine conditions and spine health.

For me, this education brings confidence in making my decisions for my future. However, there is so much to learn... yikes!

Thank you for your thoughtful moderation Jennifer and thanks to all for bravely sharing your personal stories. Your stories, concerns, personal experiences, and most of all, your support, is a gift.
Tam

@sassytwo Tam, I am touched by your kind words. Thank you so much. Decision making about spine problems is hard. I think we all learn so much from each other even if we are not facing exactly the same issues. Sometimes it comes down to learning everything you can and trusting your gut with the educated decision. I remember that feeling too because no surgeon was able to promise me that my ACDF would take away my pain. I knew that it would, and that came true for me.

I first became aware of Dr. David Handscom because he was presenting a talk at a spine conference and I found the videos online. I looked him up, and went to the bookstore to see his book. At the time, I was struggling, not about the decision to have surgery, but because my case was confusing to so many surgeons that they wouldn't help me and I was tracking the increased changes in my symptoms. I had been paying attention for years and trying to figure it out, and then I became aware of central canal spinal stenosis and had to face my fear of surgery at the same time I was advocating for it.

Jennifer

I did read that book and it was very informative as was Back Mechanics.

@gliebisch01. Curious, what did you decide to do? Did you move forward with surgery? I am still on hold, but have now met with 5 surgeons. I will wait till fall, perhaps longer and adapt life around pain in the meantime. Tamra

Hi, I had T1 through pelvis and I am six months out and a bicycling three hours a day

Really! Oh that is so encouraging! Congratulations.. I am thrilled for you. Can’t tie shoes but you can ride! 😁. Just back from a 15 miler myself. I am not sure I could ride 3 hours now!

Please share anything you are comfortable sharing? Do shoulders tire from the way u have to hold yourself? What is hardest adaptation.

Thanks for your reply!!
Tamra

You are my new hero!

@sassytwo
I two am not able to stand more than only 5 to 7 minutes sometimes 2 Minutes! ! ! Can't walk more than across my house It is difficult to just water my back yard with a garden hose. I also have significant pain when I any of these things....talk about cooking I can't even stand an clean a clove of garlic. I put a roller chair in my kitchen but it's so different to try to prepare food/meals sitting in a chair....walking thru a grocery store is tough and going out to a store to buy clothes is out, trying them on is a chore I don't want to do anymore (to much pain). My pain management doctor lowers the dose / mg of my oral pain meds every month as my pain gets worse. He is trying to force me into the spine fusion surgery, I believe he has an agreement with the surgeon ? Lets not forget this surgery is a $87K to $94K procedure. Once I sit, fortunately the pain goes down and eventually almost goes away. I can't sit for long periods of time, but if I do I'm mostly pain free and I also can sleep without pain. I have also been told FULL SPINE FUSION by the first surgeon. I am going to meet with another surgeon tomorrow to get another opinion. The first two surgeons I looked at had terrible reviews & I don't think I can get treated at Mayo in Arizona. I saw a treatment being done at Mayo called Posterior Dynamic Distraction, it may be a primarily pediatric procedure but does it have to be? Have you heard of it ? I would sure like to find out if it is an option.................I think it would be worth it for you to look into also, let me know if you do. It was done on Katelyn Miller by A. Noelle Larson, M.D., Pediatric Orthopedic Surgery in 2022 A form of non-fusion scoliosis surgery is posterior dynamic distraction. So instead of placing two metal rods and screws in the back, the surgical procedure is three screws and one rod. And it is a special rod because the rod can move and the rod can expand and grow over time.
Good luck I wish you the best. I also was impressed with the reply / response you got from Jennifer
@sassytwo How are you doing now ? Did you do the spine fusion surgery ? if so how long was your recovery ?

may I ask who did your surgery? where?

I’m not sure how long ago this conversation was posted. But I had a 3rd cervical fusion yesterday. The first was in 2006 at C5/6 the second was C6/7 with removal of 3 spiky osteophytes 2 of which were punctured into the spinal canal (thank goodness there was not a leak!) the 3rd was new that was not on the imaging 3 moths prior. However, the scar tissue had not stopped growing from the 2006 ACDF and caused 2 times the length of the estimated procedure and an assistant to be called in for extra help because of the complex nature. In December of 2023 I had to have a complete removal and replacement of the neurostimulator I had implanted in 2008 because the 2 of the wires were not working anymore and caused the generator to not work correctly that was replaced in 2022. The scar tissue was an even worse case that caused 2 of the 3 incision’s to be enlarged and a second laminectomy above the planned T8 to allow for the unthreading of all of it to allow a paddle when they final released the 3 different lengths of floating leads from the original procedure.
That surgery I feel is still in a healing mode in my thoracic area 7 months later.
Yesterday I had another planned ACDF and posterior stability rods from C4 to C6 then flipped over to start the ACDF @ C4/5 and they re did the cage at C6/7 as well from March of last year. The removal of new end plate osteophytes that were spiky again and a disc removed at C4/5.

My lumbar CT scan is similar to my cervical spine. But there is a lot of arthritis in there that has never been removed. When the stimulator is functioning properly I do not get stuck in bed with out being able to logbook as often. More in the winter but when the battery needs replaced, it happens at least 3 times a week. I’m not 50 yet, but I am single and live alone when I am able to work and support myself.

Is there a group of physicians that can help me understand why I grow much scar tissue and why it calcifies in places in my spine? It happens centrally as well as bilaterally.

I have a belly full of scar tissue after a 1999 C-section and then a partial hysterectomy 9 years ago followed by a full oophorectomy a year to the day later which ended up reopening the c-section and nicking my artery enough a specialist need to be called in. I recently found a record of a diagnostic laparoscopy that I was told afterwards there was nothing wrong with my, the record stated it was either microscopic edemetereosis (spelling?) or the type that grows in the muscle of the uterus. There was a line or some indication of evidence to support one or the other. In my mid 20’s I was told I was creating cysts when I ovulated. That the er drs were not correct when they told my family and myself that I was attention seeking.

So I’m concerned I’m crazy for being worried about more unseen scar tissue causing me difficulty being independent and unable to do some daily living activities.

Or being so incredibly frustrated that I can not get an answer of what type of doctor or team to help me understand if I can find some strategies to facilitate a new way to reduce the connective tissue problem and reduce some unnecessary pain and stress.

I want to be able to not only be independent but self supporting. I have no interest in trying to live on a limited activity schedule or budget! I’m not yet 50! I’ve had horrible experiences with er doctors and lack of explanation of what evidence does show possible causes to the end result of not being or feeling like I able to be a productive participant in my own life let alone a community I miss deeply.

Please if anyone has a way for me to begin to identify a start of a small solution, I’m am being as vulnerable as possible by asking here. Because I have not been given anything other that you a special kind of case. Do loose hope. I’m sure you figure something out.

Sincerely,

Aubrey

@idontgidontgetit2024 - Your angst is obvious in your post and I'm sorry for all your travails and discomfort.

Often the key to solving medical riddles is, first, to ask the right question. You have posed your question along the lines of, "scar tissue development which is affecting your spine and other areas.". Maybe there is a different and broader question that could help lead you to some understanding and maybe even a solution?

Have you ever seen a physiatrist? I didn't know of this specialty until I wound up in the spine diagnostic process where I had lots of negative data (MRIs, x-rays, anecdotal evidence) but several conflicting diagnoses.

A physiatrist was brought in and helped untangle the complicated and sometimes vague data. These are pain specialists and they often end up dealing with spine and back issues. I liked the idea the doctor had no particular orientation relative to surgery or not. He was only focused on understanding the causes of my many symptoms.

In the end, I took his advice, 15 months later that advice has proved to be sound, and I'm on the road to a better future. Maybe you would benefit from a physiatrist consult? Have you tried that strategy?