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#511182 - 06/01/15 02:44 AM Surgeries to address the joint damage and pain
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Although, I am not new to AS. I have had it for over 20 years. I am just now being diagnosed. My question to all of you is how many of you have had surgeries to alleviate the pain and damage of AS? Since I did not know I had the disease until 4 years ago, I went to see neurosurgeons and orthopedic surgeons to help with the damage and pain. Where I was once in a wheelchair, then a walker, then a cane. I am now walking, albeit not as fast as I used to, but still I am walking. I have had roughly 8 surgeries thus far. They have ranged from back and neck fusion with titanium to pelvis/sacral joint fusion with titanium. I have also had both shoulders/clavicles dissected and my jaw joint cleaned up. I still have pain, but not anywhere near what I first went through. My usual trajectory for these surgeries varies, but they often take place only once the disease has finally claimed the bone (and ligaments) and I am shooting numbers ranging from 8's to 10's almost 24 hours a day. I am just wondering why I do not see others doing this?
_________________________
Female 54 yrs old
HLA-B27 negative
Dx with AS 2011
Dx with Psoriatic Arthritis 2015
Family history of RA and Crohn's
Can't take Enbrel, Humira, or other drugs like that
Have problems with both Sacral Joints, pelvis, neck, back, shoulders, jaw, GI problems, ribs and heels
Had over 8 surgeries most with fusion/titanium
On low starch diet due to high CRP and other inflammatory
markers

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#511186 - 06/01/15 07:41 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18054
Loc: Toronto, Ontario
Some AS patients do have surgeries, but they are not indicated in most patients. I'll have to let them address that.

Basically, all they did for you is hasten the process your immune system was already working on - fusing your spine. It's unclear whether your AS would have got you to this point 'naturally', but now it's not something you need worry about.

I would imagine that this is an awfully aggressive treatment for average, non-kyphosis AS. That said, it has helped you regain your life, so who's to say it was the wrong route for you.

Warm hugs,
_________________________
Kat



"Frost Moon" by Nene Thomas

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#511196 - 06/02/15 10:28 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Jasonpaul Offline
Member

Registered: 08/04/14
Posts: 45
Loc: Minnesota
I've had A.S. for some 23 years. So far the only areas that might help from surgery are my hip/sockets; although my rhumey said that is from osteoarthritis and not my AS.


My A.S. is causing a fibrous/bony growth in that area as well. While I have fusing going on in my neck, it's not at the point I need surgery unless I fracture something. My shoulders and ribcage are also problematic. So in the future 5-20 yrs or so I'd imagine baring fracture I'd need some work done on my hips, shoulders and neck. I do have trouble walking at times, But I am hoping the drugs will slow that down enough that I can skip it as long as possible. My rhumey said I could see an orthopedist now, but I am going to just put it off until I have to.

But yeah, I agree with Inanna, I am glad surgery has helped you.
_________________________
Diagnosed with A.S., DDD, scoliosis, sleep apnea -- Tested positive for HLA-B27 gene; family history; visible damage on x-ray; significant iritis; enthesitis inflammation; fatigue; feverish; peripheral arthritis; Osteopenia; heart, G.I., and skin symptoms - :: - Insidious and often disabling pain started in my teens & 20's with heel pain; chest pain and hip-buttock in my early 20's; low back pain in my late 20's; mid thoracic and cervical in my 30's. Biologics in my 40's. (On remicade)

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#511224 - 06/04/15 02:31 AM Re: Surgeries to address the joint damage and pain [Re: Inanna]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Thank you for your response. I appreciate your words of encouragement.I am new to these types of forums and I have just heard of so many AS patients being in such great pain and no one seems to try this route. Grant it that not all of my pain is gone, but it has diminished in most of the places that I had surgery on. My joints had already fused at the point I had each of my surgeries. The pain and the inability to move those joints at all were what drove me to surgeries. But then I had no idea what was wrong with me. I saw several Rheumatologists, but they all said they had no idea what I had either. It took so long to be diagnosed probably because I am one of the few people who do not have the markers. Now most all of the doctors that I see say it is obvious that I have AS. Funny how things can change so quickly once someone is willing to look outside the box. Thank you again, Amazonwomanrm
_________________________
Female 54 yrs old
HLA-B27 negative
Dx with AS 2011
Dx with Psoriatic Arthritis 2015
Family history of RA and Crohn's
Can't take Enbrel, Humira, or other drugs like that
Have problems with both Sacral Joints, pelvis, neck, back, shoulders, jaw, GI problems, ribs and heels
Had over 8 surgeries most with fusion/titanium
On low starch diet due to high CRP and other inflammatory
markers

Top
#511225 - 06/04/15 02:50 AM Re: Surgeries to address the joint damage and pain [Re: Jasonpaul]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Thank you for your response. I am new to these types of forums. I too have the bony growths on most of joints, and especially on the ones that I had surgery on. Each of my doctors found several when they did the surgeries. I also had fusing going on with all of those joints that I had surgery on. Every surgery I had was due to the pain and fusing to the point that I couldn't move the joints at all. My sacral joint also had a fracture. The surgery to help my pelvis was by far the most difficult, but in the end it was also the one that got me walking again. However, I do agree with you on waiting for as long as you can before going that route. I held out until I was completely unable to move the joints and was having pain all day and every day that was in the 8 to 10 range on the pain scale. Plus, I cannot take the meds designed to help this disease as they actually speed up the process in me. My immune system has never been that great. My mother had RH negative blood and I was the 2nd RH positive child during a time when they didn't have the drugs that help the mother's blood not try to get rid of the fetus. So when I was born I didn't have the help of my mother's immune system. I will pray that you never need any surgery though. Thanks again for your reply, Amazonwomanrm
_________________________
Female 54 yrs old
HLA-B27 negative
Dx with AS 2011
Dx with Psoriatic Arthritis 2015
Family history of RA and Crohn's
Can't take Enbrel, Humira, or other drugs like that
Have problems with both Sacral Joints, pelvis, neck, back, shoulders, jaw, GI problems, ribs and heels
Had over 8 surgeries most with fusion/titanium
On low starch diet due to high CRP and other inflammatory
markers

Top
#511255 - 06/07/15 04:25 PM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
i asked two surgeons last summer? the summer before? about surgery for the bone spurs in my neck that press on the nerves and make sitting (and laying now) such a challenge.

one said she could fuse my neck, but that seemed like too much...i was hoping for bone spur removal.

the other surgeon said i wasn't a surgical candidate.

i see a chiro. i have cortisone injected into my cervical facet joints. both help. i sleep in a recliner. i drive a 1995 saturn with 250,000 miles because i can't find a new car i can sit in. i sit on very few kinds of chairs. i'm always mindful of my neck. if i sit and my face starts to go numb, that's the first sign that i need to get up, before the nerves get really compressed and start to cause real pain and muscle spasms. i use ice. i use an ultrasound unit.

i still dream of a surgery that can fix my neck. some day. maybe.

as for my SI. i've had cortisone injections into it. that helped a lot the first time. not as much the second time. humira has helped. a flector patch on it helps. the chiro helps. ice helps. aleve on occasion helps. when i take methylpred for an overall flare or for travel, that really helps. but its now at a point where its sore most days, well many days, and bad every few months. will it get to the point of needing surgery? would anyone do surgery on it? i don't know. nerve ablation is another thing that can be considered.

i take one day at a time.

i think they are good at disc surgery because a lot of people need it.

but the kinds of surgeries we might need. only if its to the point you were, do i think they'd even consider it.

but boy, i dream of a way to get rid of the bone spurs and live a normal life again.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#511260 - 06/08/15 03:28 AM Re: Surgeries to address the joint damage and pain [Re: Sue22]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Hi Sue. I, too, had the cortisone shots.They helped some, but not enough. I also slept in a recliner until I got an adjustable Temper Pedic bed. My neck pain started gradually, but by the time I saw the neurosurgeon, it was fused where I could not move it at all. I had nerve damage to my right arm where the neurologist said that I showed no signal at all in the bicep and tricep muscles. My fingers went numb and the nerve pain would shoot down my arm. When I had the surgery the surgeon came out afterwards and told my husband and mother that it was much worse than he thought it would be. He said he was glad I couldn't move it as the bones from C4 to C6 were about the size of his thumb. He said if I had been able to move my neck that it would have severed the spine and I would be either a quadriplegic or dead. He also said that I had an extremely large bone spur that actually jutted into my esophagus. I now have a double titanium ladder with 6 screws in it. Although, I have some trouble moving my neck up and down, I am able to move it side to side and with much less pain. Having my neck fused with the titanium has seemed to stabilize it. I can tell you that I had to fight to get most of my surgeries, but my neck was one that the neurosurgeon realized I needed it. I even got a 2nd opinion and that doctor told me to have the surgery immediately as I wouldn't last long without it. If any doctor tells you that you don't need surgery, first off ask why. Mostly because they need to give you a valid reason why it would not help with your pain. And secondly, find another doctor who will listen to you. No one needs to live in such pain. Fight for yourself because you are worth it. Look up everything on necks and the problems you are facing. Go in with knowledge. Always remember that doctors are practicing medicine. They are not God; although, many think they are. Don't let them make you feel like you are not capable of knowing what you are feeling. As for your SI joints, that surgery helped me get back to what I call just slightly abnormal instead of massively abnormal. I realize that I will never be the person I once was before this disease. I was a massive athlete who played several sports and even went to college on a volleyball scholarship. But, my surgeries have given me some of my life back because they alleviated a lot of my pain. Not all of it, but having pain levels from 3 to 6 I can live with. It's the 8 to 10's that knock me to my knees. I will keep you in my prayers that you will find a doctor who is willing to listen and help you find whatever will work for you. Never give up! Amazonwomanrm
_________________________
Female 54 yrs old
HLA-B27 negative
Dx with AS 2011
Dx with Psoriatic Arthritis 2015
Family history of RA and Crohn's
Can't take Enbrel, Humira, or other drugs like that
Have problems with both Sacral Joints, pelvis, neck, back, shoulders, jaw, GI problems, ribs and heels
Had over 8 surgeries most with fusion/titanium
On low starch diet due to high CRP and other inflammatory
markers

Top
#511296 - 06/10/15 09:46 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Stormy Offline
Black_Belt_AS_Kicker

Registered: 09/23/04
Posts: 430
Surgery is not generally advised to alleviate the pain of AS simply because most AS damage can not be fixed with surgery. Joints can not be unfused and surgical fusion is not considered ideal. Our goal is generally to stop or slow down fusion. Surgery often sends the inflammatory process into overdrive, causing even more inflammation, pain, and potential damage - often leading to additional fusion surgeries - sometimes in different joint areas. That said, surgeries are carefully considered and performed when there is believed to be a potential benefit. Replacement of peripheral joints (like hips) is not uncommon. Straightening the spine is done in very severe cases. Arthroscopic lavage (a/k/a cleaning out) of a joint is more often done in osteoarthritis/degenerative damage. It is not uncommon for AS damaged joints to form new syndesmophytes after lavage. Spinal fusion surgery often causes degeneration of the joints above and below - leading to additional pain and damage and often more surgery. This is true for both AS and non-AS patients.

I am glad to hear that your surgical procedures have been so positive for you. That is not a common path of treatment, but what matters most is your individual results. What makes you believe that the medications used to treat the disease have the opposite effect of speeding up the process for you?

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#511448 - 06/22/15 04:16 AM Re: Surgeries to address the joint damage and pain [Re: Stormy]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Sorry I haven't responded. I just got back from vacation with my family. I had several cortisone shots over the years. This seemed to be the go to for my pain before my diagnosis. During the time that I was on the most shots, etc. is when my AS symptoms in several areas flared up. I literally was able to tell which one would be the next area to fuse and cause me severe pain. It would start gradually with major pain in that area maybe once a month or two. But then the time in between became shorter and shorter. When I stopped cortisone shots, my flares were less often. Because drugs like Humira and Enbrel are immune suppressants, my body does not respond well to them. My immune system is a little strange because my mother was RH negative and I was the 2nd RH positive baby when there were no drugs given to the mothers who were RH negative. I have had the measles 5 times ( I got the shot when I was 6) and was told that I had no immunity to measles when I got pregnant with my daughter at the age of 40. I also had chickenpox at age 3 and then got shingles at 11. I had mono at age 5, scarlet fever at 25, whooping cough at 38, and so on and so on. My doctors and I feel that I shouldn't take Humira, Enbrel, etc. because they feel it might further weaken my already shoddy immune system. I realize that I am unique in all of this. And I would never tell anyone to do as I do, but at the same time, I did wonder why more AS people didn't have the surgeries to help with the damage that the disease caused before they were on the meds. AS has caused damage to my neck, lumbar, sacral joints, shoulders/clavicles, jaw joints, ribs, and the list goes on. Each of those joints were fused not only at the joints, but also with the tendons and ligaments. This was before my surgeries. The surgeries were used to stabilize my joints and use titanium to hold together where the disease had literally destroyed my joints. I realize that my surgeries that used titanium will more than likely cause the joints around them to deteriorate. And I will handle that when the time comes. They all informed me that I would more than likely have more surgeries down the line, but I would rather deal with that than live with the pain. I just read all of these stories from everyone and so many of them are still in pain from the damage of AS. Surgeries will not cure the disease, but they could address the damage and pain that AS caused. Or at least that is what they did for me.
_________________________
Female 54 yrs old
HLA-B27 negative
Dx with AS 2011
Dx with Psoriatic Arthritis 2015
Family history of RA and Crohn's
Can't take Enbrel, Humira, or other drugs like that
Have problems with both Sacral Joints, pelvis, neck, back, shoulders, jaw, GI problems, ribs and heels
Had over 8 surgeries most with fusion/titanium
On low starch diet due to high CRP and other inflammatory
markers

Top
#511453 - 06/22/15 12:32 PM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Stormy Offline
Black_Belt_AS_Kicker

Registered: 09/23/04
Posts: 430
Amazonwomanrm,

You mentioned in several of your posts on other threads that you were diagnosed by your general doctor, not a rheumatologist. You also have made references to having to "fight" for the diagnosis and having to convince doctors why you needed surgery. This is concerning with a diagnosis like ankylosing spondylitis because general practioners and surgeons are not qualified to diagnose and treat this disease. While you are saying that "most" doctors agree that it is obvious that you have AS, are any of them Rheumatologists?

Originally Posted By amazonwomanrm
Because drugs like Humira and Enbrel are immune suppressants, my body does not respond well to them. My doctors and I feel that I shouldn't take Humira, Enbrel, etc. because they feel it might further weaken my already shoddy immune system.


That does not sound like the advice of a rheumatologist. It sounds like the opinion of someone who is not well versed in the treatment protocols for this disease. GPs and surgeons may have the best of intentions, but it is not accurate to say that these medications will automatically suppress your immune system - regardless for the reason your immune system may be different from the norm. Enbrel, Humira, and the like are more accurately referred to as immune system modulators. Many people are surprised to find that they not only do not get sicker on TNF-a medications, they actually are healthier overall. My documented IgG deficient (young adult) child has not had a single illness on Humira or Remicade. If you are not under the care of a rheumatologist, I highly recommend seeking one out. There are many highly qualified rheumys in California.

Originally Posted By amazonwomanrm
I realize that I am unique in all of this. And I would never tell anyone to do as I do, but at the same time, I did wonder why more AS people didn't have the surgeries to help with the damage that the disease caused before they were on the meds. ..... The surgeries were used to stabilize my joints and use titanium to hold together where the disease had literally destroyed my joints. ..... I just read all of these stories from everyone and so many of them are still in pain from the damage of AS. Surgeries will not cure the disease, but they could address the damage and pain that AS caused. Or at least that is what they did for me.

The only way to repair a truly fused joint is through total joint replacement. Many of us have had or will have some of our joints replaced. However, the risk of surgery is simply too great to leave the disease essentially untreated and systemically replace joints or have periodic joint lavage performed. The healing process after surgery often sends AS and Spondyloarthropathy patients into a disease flare - the complete opposite of what our doctors would recommend.

You have apparently been very fortunate that your pain has been reduced through surgery. That would not necessarily be the norm with significant spinal surgeries. I am truly happy that you are pleased with the outcome and your choice of "treatment", but it is definitely an unconventional approach.

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