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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

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#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: 430


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: 21298
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: 5180
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

Top
#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: 21298
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)

Top
#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

Top
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