Doc recommends spinal fusion from T12 - S1.

@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 ?

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?

@rwdixon4 I think seeking other opinions would be beneficial. Have you applied to Mayo in AZ for an appointment? Something to check on first would be to see if you have insurance that is accepted. Another respected spine center in AZ is the Barrow Neurological Institute. I don't have experience with them, but I have seen a lot of activity of their surgeons at the Spine conferences with presentations of research on spine conditions and treatment.
https://www.barrowneuro.org/centers-programs/spine/
If you want to inquire about your insurance at Mayo, here is a link.
https://www.mayoclinic.org/billing-insurance
If you do have compatible insurance and want to request an appointment at Mayo, you may use this link to get started. http://mayocl.in/1mtmR63

You're right, the skill of a surgeon is very important. I don't put a lot of stock in typical online patient reviews because you don't know why a patient would be upset and if their opinion is a fair assessment. Sometimes a patient arrives very late and a surgeon can't see them because they have to keep to the schedule with their other patients. That wouldn't tell you how well they do their surgeries or what their statistics are for success with procedures.

Im so glad you were able to find someone to help find a path!

I have asked to see a physiatrist but the prior authorizations were never approved. when I have asked the most recent surgeon, he advised me to speak to my current PCP. the PCP said that "you just seem to be lucky and I dont think there is an answer for your many conflicting issues other than acceptance",

I have moved and scheduled an appointment with a new pcp. the Dr.'s i had been seeing in this area for 10+ years are not available with my current insurance. I will ask again to get a referral to a physiatrist.

on a good note, I woke up from the procedure with out the electrical shooting pain in where it has been for the past 3 years!! So I have a new hope that I am reall grateful for and was not expecting!

I will also take your suggestion of looking for different places to ask questions. I am not going to give up on myself, but I have had such a difficult time trying to figure out which questions to ask.

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!

I am paddle boarding riding my bike three hours a day walking my dog. I still have pain but because I had so much fusion it’s only been eight months. I think it takes at least a year to two years to be fully pain-free.

Do you still have the sharp stabbing sciatica pain? If my fusion doesn't take that pain away, I quesstion why I would have the surgery.... or at least at this time.??

No, no more pain there. I still have some pain in my back, but it is minimal.

I want to Thank You for your reply I actually did write you a long reply and included the reviews I read but decided to scale it back (allot). First I want to say the reviews I read were about procedures that were performed on people and that they had a real impact on there life's (most not good) I understand what your saying though as one of the reviews was suspect and harsh~ so I cut them all out! I am still happy I read them as it prompted me to continue my search for another surgeon and I found a Doc that I am very satisfied with. His name is Dr Orisek and he looked at my MRI & X-ray's and suggested I not do the Goliath surgery he does not like to subject patients to that type of Shark-Bite procedure if there is another way. Dr Orisek said I have a crushed disc and one that has had kyphoplasty performed and without going into detail those two are the primary source of the pain / problems. He explained how he would go about repairing, however I need to have sufficient bone density as it is contingent on that. I had a Dexa scan done two years ago it showed Osteopenia in the lumbar spine I have been taking D2 125MG(50,000 UNT) since then. I go in for a follow up Dexa scan Monday so will see? I really hope you can find an alternative to spine fusion. I was looking at a FULL SPINE FUSION and I really did not want to go down that road.