Other Surgeries to Fix Scoliotic Problems

[jackieg412]

Tina, I just read your recent post. I have a condition called arachnoiditis that gives the exact things you mentioned. It is not curable but can be helped. I was diagnosed though a myelogram. Until you can get the test done, it one thing I find that helps is rocking. Either back and forth on your feet of in a rocking chair. Look it up for more information. It causes everything you describe and can cause pain. I am more neurological in my symptoms but the pain pump I have keeps the spinal fluid moving so the rocking does too.

[Tina_R]

Linda said everything I know about MRI's not being helpful because of the hardware. However, when I was in a major accident with a broken neck I had a CT scan that proved that . But because of the pain I was having throughout my torso the neurosurgeon knew there could be more. So he had an MRI scan also, one even with the hardware it showed 2 large blood clots in the epidural space spanning both the cervical and the thoracic.
Don't be afraid to question the test. You have a right to know what he is looking for and the right to question the reason behind the type of orddr.

Does the hardware not interfere with CT scans as well as MRIs?

[Tina_R]

Tina, I just read your recent post. I have a condition called arachnoiditis that gives the exact things you mentioned. It is not curable but can be helped. I was diagnosed though a myelogram. Until you can get the test done, it one thing I find that helps is rocking. Either back and forth on your feet of in a rocking chair. Look it up for more information. It causes everything you describe and can cause pain. I am more neurological in my symptoms but the pain pump I have keeps the spinal fluid moving so the rocking does too.

I will be sure to keep arachnoiditis in mind, jackieg412, and bring it up it at an appropriate time. When you first mentioned it, I looked it up. Sounds like something where the diagnosis is missed a lot.

Do you have any issues with walking?

[titaniumed]

11 years ago, in 2009, Dr Boachie did a presentation at HSS on Adult scoliosis, DDD, stenosis etc...He does mention about problems that arise when stopping short under fusion masses. Dr Boachie is highly respected in the scoliosis community. He does the worst cases in the world.

The long fusion to L5 patients don't do very well, so I am very very careful in selecting them. I have probably done five L5 fusions in adults. This patient is still doing very well; a couple of others are still hanging in there, but what happens is, it just shifts all the load to the 5-1 so it doesn't take long for 5-1 to degenerate and become unstable. So in most cases we extend the fusion to the L5-S1 level, to avoid refusion and extension.

https://www.hss.edu/conditions_adult...l-stenosis.asp

Moving on without posting a mountain of material, the Tiger Woods story is ALSO worth thinking about.

He had 4 procedures done on his spine. Probably decompression and or laminectomies to try to resolve his pain which did not work for him. Do you fuse the best golfer in the world? Tough decisions....

His problems were finally resolved with an L5-S1 ALIF through the front and he is back playing professionally once again. It took several years and 4 surgeries. (For 1 level) (No scoliosis) They are using Titanium coatings on PEEK spacers these days, that's what they used on him.

I remember when Dr Berven was talking about doing shorty fusions at one of the UCSF meetings but I was under the impression he was referring to doing this on patients in the age 75 range.....People that can't handle long operating times. I can't remember specifically.

I guess that's the long and short of it. (Scoliosis pun?)

I also like the Johns Hopkins site video on radiculopathy. Radiculopathy is a term that incorporates multiple problems on each level without being specific. It includes, Disc herniation, Spinal Cord and Nerve root stenosis (narrowing), nerve impingement, Osteophytes, DDD, Etc. Etc. Fusion is just one part of the equation on each level of the spine. You can't say fusion does not work when there are all these factors on every level of the spine. Only if you know all the other problems are resolved, and proof of a non-fusion, you can say, it didn't work.

The videos do a great job of explaining the complexities of our spines.
https://www.hopkinsmedicine.org/heal.../radiculopathy

Dictating scoliosis surgical procedures should only be done by "scoliosis trained" doctors trained at credible training centers. Revision patients need surgeons who have a history on working with revision patients. Descriptions of pain and hardship need to be exacting. This is so important. Also swaying any decision by saying "I want this done" or "I don't want this done" is not a good idea. Best to go in blind and just listen. If one is afraid of surgery and conveys that, that's exactly what will happen. PT forever....which can work well in some cases, but be quite the battle should one have multiple disc or inflamed neurological problems. I was there, been there, done that. My surgeon trained at TCSC. It was probably my first question.

My arm and shoulder were broken up bad from a ski crash when I did my scoliosis surgeries and the arm withered away and looked like a toothpick. After my shoulder surgery 9 months later, I got it all back in PT.... 99.9% of it. It came back quickly. I was an orthopedic nightmare when I walked in the hospital for my scoliosis surgeries.

Ed

[titaniumed]

Does the hardware not interfere with CT scans as well as MRIs?

You can go through the Zimmer site and other sites and they will state that MRI and CT around implant materials can produce optical distortion. They even state this with some of the Titanium alloys....

I would imagine this can complicate things for radiologists and doctors. They do slices from many angles, CT's are generally viewing "feet to sky".

You can ask what contrast they will use. I have had an Iohexol CT for looking at herniations. Visiplaque, and Barium on my gall stones. Piridium only for kidney stones. When stones are 1" in diameter, distortion doesn't matter much. (smiley face) Ed, you have bowling balls in there!

Always check co-pays before you lay in any machinery. I had a cervical MRI done in 2013 and the Co-pay amount was more painful than the neck. MRI usually cost about double of CT scans. These machine are VERY expensive. If the cost is out of control, get the order and shop it. If you have cash, some diagnostic centers will negotiate.

I always get copies burned to disc. You paid for them. If you move or a doctor retires or hospital goes bankrupt, you just lost your diagnostics. These can be handy down the road. The doctors always want any diagnostics or date you can gather up.

Ed

[LindaRacine]

Funny how you and Titaniumed talk about pain a lot. I never mentioned pain. That's not my issue and never has been. Being unable to control my legs is my issue. It makes me think my experience is very different from both of yours, and from most other people's.

Sorry about that. I don't know whether I picked it up from Ed's post, or made an assumption. It is fairly unusual to have severe neurologic symptoms without pain. Not that it lessens your issue, but I'm glad you don't have to deal with pain in addition to your problem.

I hope that your doctor can figure out the problem, and that it's not permanent.

--Linda

[Tina_R]

Sorry about that. I don't know whether I picked it up from Ed's post, or made an assumption. It is fairly unusual to have severe neurologic symptoms without pain. Not that it lessens your issue, but I'm glad you don't have to deal with pain in addition to your problem.

I hope that your doctor can figure out the problem, and that it's not permanent.

--Linda

I have plenty of pain, but it's all over a wide area of my back and is probably from the rods. From what I've been reading I'm one of those unlucky people who can feel the rods and have pain from them. I'd rather not have it, but it's bearable. I'll deal with that someday if it doesn't get better, but right now my biggest concern is the pinched nerve and my walking problems. Far more important.

There isn't just one point source of pain that would indicate where the nerve compression is happening.

Thanks.

[jackieg412]

Yes it gives me a challenge to walking. It wasn't right after the fusion surgery but years later. Almost like it had to take time to develop.
I now have a nonunion at T6-T7. It was not found on an xray. Even though I developed a wound that wouldn't heal. The pain is intense. It was found on a myelogram and very obvious on the ct.
I guess wait for the test and get a disc . Also get a copy of the Dr notes. It will give you more information.
After the test, go back and get the radiologist report. It gives you information to discuss with your Dr

[Tina_R]

Yes it gives me a challenge to walking. It wasn't right after the fusion surgery but years later. Almost like it had to take time to develop.
I now have a nonunion at T6-T7. It was not found on an xray. Even though I developed a wound that wouldn't heal. The pain is intense. It was found on a myelogram and very obvious on the ct.
I guess wait for the test and get a disc . Also get a copy of the Dr notes. It will give you more information.
After the test, go back and get the radiologist report. It gives you information to discuss with your Dr

Your case sounds complicated. Wasn't your wound from an infection?

[jackieg412]

The wound happened with no apparent reason but a miss step . It was finally diagnosed as an internal pressure wound. It tested positive to the common skin staph. The surgeon was not ever concerned about that as it would be very common.
That being said it is more apparent now that when I miss stepped ( I would say like missing a last step but not falling) the pinch I felt was the fusion giving. That vertebrae is now mostly leaning sideways. The pain is intense at that one spot which is T6-T7. Weather it never healed or just broke I don't know. The fusion in that area was February 2011. No indication of hadn't healed until there was a problem.
Also the major car accident and the requirement of extending of the fusion to C4. That put a lot of pressure on that area.
I am scheduled for October 30 to have the hardware removed ,an osteotomy at C7-T1, and hardware replacement. The screws in the cervical are too prominent and more that 50 degree curve in the short span .
So much fun.

[titaniumed]

I have plenty of pain, but it's all over a wide area of my back and is probably from the rods.

It's hard to say, yes and no. Some can place blame on hardware, especially when rods break and stick out of the body. But then you have to ask why that happened. Chances are that it's not the fault of the hardware... possibly infection related which why some members here have had their hardware ripped out. (years later) Infections could be a blame for pseudarthrosis....and this is why our immune systems are so important in major surgeries. If one's immune system is compromised, they are going to struggle with battling infections. On what level. I don't know. I often think that all of us that have hardware installed battle constant infection to some degree....Once the bacterium get in there, there is a biofilm process that happens on the hardware, most of the significant changes in this area happen in the first week or so after our surgeries. To understand, you would have to dig into the subject of biofilm's on hardware. (Implant biofilm) There is also a discoloration of the soft tissues, you can see some of this in revision surgery videos. Our rods can turn a charcoal color along with the soft tissues that surround the hardware. This "might" explain some of the pain. It might explain why beartraps and gripping and stiffness happens.

Pain can be pinpoint, or it can be all over. The worst pain I have ever had was from a 9mm kidney stone that jammed halfway down one of my ureters. Since the ureter has a 2mm internal diameter, it would be like swallowing a softball. The source of the renal colic pain was identified on CT images, an exact pinpoint site, but the pain was all over. Like driving a Ford F350 on my chest. It was one of the few times where I asked to be knocked out with morphine and got my wish. My CNS was in overload. I feel sorry for some of the renal patients. Some people pass thousands of stones every day, and some jam, and laser lithotripsy happens on a regular basis. That's what I had done. If you read the fine print on your medications, you will see that NSAID's can also lead to kidney problems. Amazing in how they work so well with pain, but know the consequences of taking any medication long term.

The fact that your leg is withering away is of concern. If something is discovered, that's helpful, and if not, they might want to get into your lower spine so you need a surgeon that is confident on this procedure. If not, a referral. They might want to do an ALIF and get in from the front. This is usually done on difficult spine cases. (and L5-S1) Having that access from the front is beneficial. But there are also another set of complications that can happen from ALIF. Each procedure has its own set of complications.

John Sarcona who did multiple procedures which eventually failed, had his surgeon state there is nothing to be done....Until he was sent to Dr Lenke. John stated that "It was a chance" I think it's extremely important to never lose faith that there is someone out there that can help. The problem is finding that "right" surgeon and having him select the "right" procedure with the right levels. There are members here that know this. Commitment on the first surgery is lifetime.

Think I will post it again.
https://www.youtube.com/watch?v=gkfF...terianHospital

Thinking about difficult member testimonials where they have had multiple experts state that everything looks good with hardware, not seeing anything wrong doesn't mean they are right....and pain is the proof. It's damning evidence....and hard on the surgeon since their efforts are also proof that they try so hard at trying to help patients. It's their goal to help. To personally see the sadness on Dr Burch's face when he told me that they don't know why some people do not fuse was something I will never forget. Concrete or cheesecake....He was also talking about a young scoliosis patient which was alarming... all I could do was absorb this information.

I hope some of these thoughts are helpful for patients...

The answers are out there.

PS: The Vitamin D is working pretty darn good.....no mouth infections for 3 months, and herniated neck doing well.

Ed

[jackieg412]

I agree with Ed. Someone can find the problem. But not all prob!ems can be fixed( like arachnoiditis). It can be dealt with but not cured.
Also difficulty in walking can be tiring. My right leg is small than the left. It also feels weaker but it can be that I don't trust it. That knee gives some pain on stairs.
Try to make sure that the test gives as much information as possible. Keep your disc and reports as they can be reviewed by another doctor.
Is your Dr a neurosurgeon or orthopaedic? They do look at things differently.

[titaniumed]

But not all prob!ems can be fixed( like arachnoiditis). It can be dealt with but not cured.

Yes, this is true. But if there is a chance at living better with less pain, you have to believe, and you have to have faith. I never thought I could be fixed with all the pain I was in, let's face it, my spine was a disaster. When my surgeon told me at the end, "It will help" that's when the green light came....hesitation, rejection, hesitation, then after thinking about it a long time, confidence came. It took some time for surgeon and patient to think and adjust, and accept. When my vascular surgeon asked me if I was afraid upon entering my surgeries, I told him "am I supposed to be?". Positive attitude at that point couldn't get better...and yes, it got tested again during my recovery, but all my negative thoughts were all wrong....The complications did come, after all, they were guaranteed 100%, but was prepared and ready in my mind. It's never an easy thing, but then most good things take effort.

Arachnoditis is a tough situation. Scoliosis and Kyphosis also can be really hard at times. Of course there is no cure, but the best we can do is take things one day at a time. Positive attitude gets tested and it takes effort on our part. Comedy helps....I guess I should look for more Benny Hill videos. We sure had a blast here back in the old days, but I was in pain. I guess a natural reaction, a mental release from being so serious. It's important to let your hair down and write....

You mentioned the rocking chair, and I remember Dr Tennant talking about that years ago for arachnoditis patients....was that something new, did your doctors in Chicago mention this? I am glad it helps.

Ed

[jackieg412]

Actually I figured out that rocking back and forth helped before I even knew about arachnoiditis. Then I read it seems to help some patients. I rock on my feet, just back and forth. But if. I sit I use a rocking chair. It does seem to help.

[Tina_R]

Actually I figured out that rocking back and forth helped before I even knew about arachnoiditis. Then I read it seems to help some patients. I rock on my feet, just back and forth. But if. I sit I use a rocking chair. It does seem to help.

Rocking back and forth to relieve pain seems as automatic for the body as shivering in the cold.
I rocked back and forth for days when I had my ileus (bowel obstruction) from the opioids in the hospital. It was one of the worst pains I ever experienced. The only other way to relieve it was to lie down on the spot where the pain was coming from. But I didn't want to favor one position after spine surgery.