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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: 21277
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: 428
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: 428
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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#511468 - 06/24/15 01:37 AM Re: Surgeries to address the joint damage and pain [Re: Stormy]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
It is obvious that my statements have irritated you and for that I am truly sorry. I have seen many rheumatologists. Most were at the beginning of all of this and I was told that I do not fit their boxes. However, my diagnosis was confirmed with a rheumatologist after my general doctor diagnosed me. As for my not taking Enbrel, Humira, etc. that was my decision. All of the doctors have said I should be on it, but they have also said that they can understand my reluctance to be on them. They also do say that my immune system is weak and that it might not be wise to be on them. But they want me to try them anyway. However, I am not willing to risk the flaring up of my AS or the side effects. With any medicine there are different reactions for every person. I have even told people that I meet who have AS to look into trying these drugs. I do not believe they are bad or faulty. I just feel that they are not right for me. The reason that I had to fight for all of this is partly because of doctors believing like you do. I am sorry that I do not fit your box. Everyone is different. There are no 2 people who have AS that are the same and have the same areas affected or the degree of damage. As for my surgeries, I have had complete joint replacement on a few of them. But they also surround it with titanium in order to stabilize the joints. And yes my surgeries are very dangerous and lengthy in their recoveries. But I am up after the surgeries and then go through physical therapy. But they have helped me tremendously and I just felt I should share this option. No one should pursue surgeries. There are many lines of defense prior to going this route. I tried them all (except for the drugs.) I just feel that people should be given different views and options. The pain from this disease is beyond anything I have ever felt. It makes you into a completely different person. So much of who you were is taken away. So for me to hear so many AS people share how much pain they are in, and not to at least say that this option did work for me, I feel would be negligent of me. I feel we should always look into what other doctors can do for us even if they are not as well versed as a rheumatologist. And in the same way, I feel that people should also look into what a rheumatologist can input into their problems that may not seem to be in that field. This disease is so often misdiagnosed that if some people didn't look to a rheumatologist even when they were told they didn't have anything that would be in that doctor's range of knowledge, they would continue to not know what to do to help themselves. However, it is obvious that I was apparently wrong in offering this option. Sadly, I was just looking for a group of people that would understand what I have been through and will continue to go through. This disease is polarizing in what it does to people. Those who don't have it can have a very hard time understanding what is happening to their loved ones. I also feel that if we can offer help to others, that we can get ourselves off of our minds. This disease can sometimes make you into a very selfish (albeit, depressed) person. Thank you for your reply, but I am not sure this is where I should be right now.
_________________________
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
#511473 - 06/24/15 10:37 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Stormy Offline
Black_Belt_AS_Kicker

Registered: 09/23/04
Posts: 428


Originally Posted By amazonwomanrm
It is obvious that my statements have irritated you and for that I am truly sorry

I am not the least bit irritated. You posted about a very unconvential way of handling this disease and wondered why more people were not taking the same path. I provided a factual answer as to why the mainstream medical community does not consider surgery a good option for treating AS patients.

Surgery for patients with AS often leads to further surgery. Repeated anesthia is a significant concern - even in the healthiest patients. Intubation of an AS patient with cervical involvement is a potentially life threatening risk. Spinal surgery does not necessarily reduce pain in the long run - regardless of the underlying reason for the surgery. These are simply facts. I'm am sorry if my stating them offends you in some way.

Originally Posted By amazonwomanrm
Thank you for your reply, but I am not sure this is where I should be right now.

I don't post here often, but I do tend to respond when I notice significant inaccuracies treated as fact or unconventional and unproven therapies recommended in lieu of known effective treatment. I also tend to say something when undiagnosed posters are told that they definitely have a disease that no doctor has specifically diagnosed. Very few contributors here are physicians and nobody here has examined another poster the way a rheumatologist would. I am sorry if my opinions offend you. I am not stating my opinion in some attempt to run you off. You are certainly free to disregard my posts.

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#511476 - 06/24/15 07:12 PM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
snowshoe Offline
Platinum_AS_Kicker

Registered: 09/10/01
Posts: 1658
Loc: Lost
Greetings, you have had a bunch of surgeries and the important point is that they have improved your quality of life. Just because several have stated that this is not the normal course of treatment does not mean that you are wrong in your choices. I think the responses have been respectful so please consider sticking around. Several people have had surgeries related to AS affected body parts including extensive spinal surgery. Most doctors I've consulted with of all specialties are very conservative in recommending surgery and usually as a last resort...I appreciate that because I'm conservative about surgery as well. And certainly have had to have proof of necessity and jumping through numerous hoops before insurance would approve any surgery. Wishing you continued improvement!
_________________________

This bunny Kicks AS !

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#511483 - 06/25/15 03:56 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21277
Loc: Upstate NY
reading with interest, just been busy at work.

this is a good exchange of views.

its good to hear two sides of a discussion.

hope you stick around. snowshoe is right.

i have learned and used so much from this site. i owe my dx to this site. i couldn't get dx'ed locally for 12 years, and flying to another city in another state never would have occurred to me if someone here hadn't suggested it, done it themselves. too, from here, i was able to see what symptoms were connected to the spondy and help the doctors put it all together. no doctor ever made the connection between bowel and joints, and once here, i could do that.
_________________________


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)

Top
#511485 - 06/25/15 04:11 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
ineptwill Offline
Titanium_AS_Kicker

Registered: 03/31/02
Posts: 5178
Snowshoe....right!!!!!




Arghhhhh


Edited by ineptwill (06/25/15 04:12 AM)
Edit Reason: |Forgot how to spell Sloeshew

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#511492 - 06/25/15 11:55 AM Re: Surgeries to address the joint damage and pain [Re: Stormy]
David812 Offline
Journeyman_AS_Kicker

Registered: 04/16/13
Posts: 103
Loc: Portales, NM
Originally Posted By Stormy
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...


FWIW, I've found the exchange here to be very respectful and I'm not sure what led to the hurt feelings. Be that as it may, I wanted to speak to my own personal experience with what you mention here.

My initial problem started with impingement in both hips which tore both labrals. I had no idea I had an inflammatory disease, but my orthopedic surgeon saw inflammation in the SI joint and was clearly hesitant to move forward with labral repair (the left hip was worse and so we were starting there). But I just wanted my hip fixed and I insisted that we do so quickly. I had torn my labrals over a year ago at that point.

I had the surgery, major joint resurfacing to erase impingement and repair of a severely torn labral. In six months, I was planning to get the right one fixed. But that is going on three years now and I have never had the other surgery. The surgery was successful from a repair standpoint, but it probably took two years before I could say my pain was any less. It was so frustrating and disappointing. And now with a flare, like I'm having currently, both hips kill me. I had no idea that havoc something like AS could play on an area where you have had surgery. My AS symptoms overall got worse after the surgery. It was almost like it triggered its aggression.

One day my right hip may get bad enough that I have to get that labral fixed, but it will not be with the eagerness of the first surgery. I'm glad for any who have been helped through surgery, but unfortunately, my own experience is much more like you describe here.
_________________________
David

Diagnosed AS August of 2012
Diagnosed with Eosinophilic Esophagitis/Colitis or Crohn's August 2013
Currently taking Cimzia, Naproxen, and the occasional Tramadol

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#511520 - 06/27/15 09:47 AM Re: Surgeries to address the joint damage and pain [Re: David812]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21277
Loc: Upstate NY
David,

thanks for sharing your personal experiences.

sorry it didn't have a better outcome for you. i hope things do improve though.
_________________________


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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#511548 - 06/30/15 02:17 AM Re: Surgeries to address the joint damage and pain [Re: amazonwomanrm]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Thank you to all of you that have encouraged me to stay. Sorry if I took things wrong from Stormy, but it just felt like I was back to having to prove myself like I had to do to get diagnosed in the first place and also to get doctors to take notice of my pain. This has been such an emotional and physical struggle for me that I guess I read into Stormy's responses. Like I said at the beginning of all of this, I am new to places like this. I am truly sorry for those of you who have had bad outcomes or at least not that great of outcomes from surgeries. Mine were not perfect, but they did take the major pain away. Although, I had to have the pelvic/back surgery twice before it worked. I am sure that the only reason it did was because the neurosurgeon literally "Locked and Loaded me" (his term, not mine) and shored up everything with the titanium. Thanks 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

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