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    SI joint dysfunction
    charl1942 posted:
    I have been to a neurosurgeon who sent me to a anesthesiologist for an SI joint steroid injection bilaterally. For three incredible days I felt 90% better. Of course that shows we had it in the right spot, I understand, but what is the solution? Can anyone speak to that being the source of pain and what was done to rectify it?

    I haven't been able to sit for more than a few minutes at the time in years. I have mentioned this on this board several times some time ago. I tried a donut pillow and all kinds of soft and more solid pillows, to no avail. That should have told me the problem was further out than the tailbone.

    I know you all wish for a quick solution to your problems, so you know how desperate I am. The hardest part is not being able to sit.

    The later in the day the worse the pain is. I have not had back surgery, but MRI, CT scan and Xrays have revealed I have DDD, and injured hip bones as well. Other things that come with aging.
    bj1208 responded:
    Hey Charl -

    Sorry didn't see this post til your other post -

    basically with the SI injection the resolution is that if you are getting relief then it's in the right area - they may want to do a couple more injections just so to insure the medicine is in and getting around the areas.

    what they are looking for is long term relief as some may benefit 6 mts to a year before having another shot. and in your case they will be looking at how long the injection is working on you.

    have you been able to sit for longer periods since you have had the injection? if you still have pains how long does it take the pains to come back when you do sit? these are some of the questions the doc's will ask plus other types of questions.

    as far as the DDD - most people will develop this as they age as the bones do so thru changes so it's not uncommon. some people as early as in their late teens can develop this especially if it's hereditary.

    I forgot when you last had your testings done but when did you last have MRI CT Scan or Xray done? its always a good idea to have ones done yearly to check for changes that may occur.

    hope this helps~~
    ~~ Click on my name or picture and read my story ~~

    Take care ~~ God Bless ~~

    ~~ Joy ~~
    charl1942 replied to bj1208's response:
    Hi Joy,
    I have not been able to sit for longer periods of time since the injection. In fact my pains are worse now than they were. The pains come back almost immediately when sitting. The pains are now all the time and not just when sitting. I have begun to have sciatica now as well.

    I have made an appointment to see another neurosurgeon because the first doctor said I am a prime candidate for an Ifuse. The medical community has now perfected a new type fusion of the SI joint which is safer, heals faster and has better results than the previous type. I would never go into surgery without at LEAST one more opinion.

    I have recent X rays, CT scan and MRI's. Those are about 6 months or newer.

    Thanks for your answer, as usual.
    painloopy replied to charl1942's response:
    Hi Charl1942,
    Did you get the ifuse done? If so - how did it work for you? I think I would be a candidate for this too and looking into it but not finding much other than on the main website for it. Not even sure if it's FDA approved. My doctor doesn't do it so I have to find out who does in my area. Like you - I can't sit for very long at all without pain shooting down my legs and my butt getting muscle spasms and sharp pains all around the SI joint area. I have DDD, an artificial disc replacement, and other bulging discs now too but I get some relief from SI joint steroid injections. They just don't last very long (1week - 1 month). I tried Radio Frequency Ablation but it didn't work.
    Any feedback you can give would be helpful! Thanks!

    DDD, 2 discectomies L3-L4, L4-L5, ADR L4-L5, spinal stimulator implant, facet and SI joint injections, too many pain meds.
    charl1942 replied to painloopy's response:
    Dear Painloopy,
    I did have the SI joint fuse. Yes it is FDA approved. It is just a newer surgery type which is better due to the small incision and other things. Not all physicians want to do it and haven't learned. It has been available for a few years now. Many people do have this surgery after a lumbar fuse. My reason for not being able to sit is/was muscle spasms in the butt. The pain was terrible. Now I have an unidentified nerve in my rectum. That is causing a serious pain when sitting. I had a steroid recently which did not help the nerve at all. The doctor did not know whether it would help to try and spread the medicine over the nerves just above the painful area. It has been four days and I haven't had relief. It cannot be determined which nerve is in my rectum therefore no one wants to smash, burn or cut it. I could have terrible problems if it is done. Now what do I do? A research hospital has diagnosed me with pudendal nerve problems, so I will mention that to my pain mngt doc me next visit.
    I have tried the SCS, but it didn't work for me. My doc said "I am a hard ass when it comes to giving narcotics", I am new to his office. I like his candid answers. He thought for at least 5-10 minutes trying to decide what might be the best way to try and treat me for the most success. I trust you will find success.
    painloopy replied to charl1942's response:
    Thanks for the update! Sorry to hear you are having issues with nerves still though. They are like finding needles in a haystack according to my docs. There is no way to pinpoint exactly which nerves are the problem. I think that is why my radio frequency didn't work. I have a SCS too and works well for my shooting nerve pains down my legs but only to a certain pain level. If I'm having a really bad day - nothing helps!

    How long was the procedure for the SI fusion and did you notice improvement quickly afterwards? Do they put you under anesthesia? I found a local doctor who does it so I'm going to go so see him soon and get more info there too.

    DDD, 2 discectomies L3-L4, L4-L5, ADR L4-L5, spinal stimulator implant, facet and SI joint injections, too many pain meds.
    charl1942 replied to painloopy's response:
    Hello P
    Yes you are right about the physicians having trouble identifying nerves because there are masses of nerves at the base of ones spine. They are like very,very fine spaghetti.

    Yes it is a real surgery, so you would be completely "out" for the surgery. The recovery time for me was about two months until I felt pretty well. I do believe it has helped, however, I still have the problems I explained earlier plus..........

    The last injection kicked in at about the 13th or 14th day. I think overall I am 60% better. I had read it could take that long, but once I past the 6-7 day period I had given up hope. I continue to have problems with pain in my outer thighs and hips. I have an appointment next Tuesday to see the pain mgmt. doc again. I should know more about the direction of further treatment after my appointment next week.

    I wish you a low pain day, and lots of hope for your future.
    I do not post hear much, but I will try and check in soon.
    aprilrose9 replied to charl1942's response:
    Dear charl1942,

    Read through everything and was very interested in getting in touch with you. I too, suffer from severe S.I. joint pain. This has been going on for 20 years. Initially, I was injured 25 years ago and had three back surgeries. The S.I. joint pain is far worse than the back pain I had prior to any surgical intervention.

    I live in a part of the country with very good health care, but have run into a brick wall trying to find someone, anyone, who can effectively treat the pain. Over a month ago, my PM doc could not understand why I cried in his office. He was disgusted with me and asked me FOUR times why I was in tears. Four times I told him I was frustrated. I had been on my medication for too long and the efficacy was zero. I was the one who suggested a med change and he had the nerve to be digusted with me!

    I feel so alone and isolated having this problem. If you tell people S.I. joint pain is worse than back pain, they are irritated with you for claiming your pain is worse. I have been saying this to warn people of the possible downside of spinal fusion surgery. I was told spine surgery did not work in 90% of people (which is a falsehood), and never told it could make me so much worse.

    The cold weather has set in and I am miserable with S.I. joint pain on the right and left and bilateral leg pain. Every single day I wish I had never let a surgeon touch my back.

    I hope to hear from you.
    painloopy replied to charl1942's response:
    I met with the doctor about having the ifuse surgery done and it sounds promising. He said he has done well over 100 surgeries with 85% success rate (meaning the patient had some degree of pain relief). He made it very clear that it would only help the pain that is generated from that location (primarily the upper butt) and no where else. He looked at my xrays and said the spine above my disc replacement is a mess and not to expect this to fix pain generated from there so I have to keep my expectations in check. I have pain from the SI mostly when I sit or stand so I'm hoping that will get better. I'm scheduled for March 6th.
    How long was it till you could sit or drive? He said I would need a walker the first two weeks and may not be able to sit well till after that but some recovered faster.

    DDD, 2 discectomies L3-L4, L4-L5, ADR L4-L5, spinal stimulator implant, facet and SI joint injections, too many pain meds.
    charl1942 replied to painloopy's response:
    I am sorry that you are having so much trouble trying to find a PM who will listen to you and understand your condition. Your doctor certainly should be willing to work with you and give you the advice and treatment that he is licensed to uphold. It sounds as if he could come closer to keeping the first of a physician's Hippocratic Oaths...(first do no harm). It sounds as if it has come the time when you should seek out another who is willing to treat you with the respect and needs with which we are all entitled.
    I have heard many even on this board who have said they were worse after a spinal fusion than before. I am sure there are many, fortunately, who have had great success with a fusion.
    I hope you will not feel alone and isolated by having your problems, as many of us feel the same as you. We all, from time to time, if not most of the time, feel alone with our suffering and do not know the answers. I guess if we had the answers we wouldn't be suffering, would we? I don't know how it feels to have a spinal fusion, but I do know about SI joint pain and surgery. The pain is just terrible. I think whatever we suffer with at any given time, is worse than the time before. We are blessed with the ability to forget the former pains which were so bad and debilitating. I think it would drive us insane to remember the extent of former aches and pains.
    It has been a long day for me today, and I am beginning to really feel it on my backside. I trust you will be encouraged and find someone who is able and willing to help you with your pain.
    Anon_960 replied to charl1942's response:
    I am sorry painloopy and aprilrose9

    My response last night last was replied to painloopy, but was addressed to aprilrose9.

    It was a response to aprilrose9.
    charl1942 replied to painloopy's response:
    Hi painloopy. My doctor who did my SI fusion gave me the exact statistics as yours did. He also said he had done a hundred or more of them. He just happened to be a neurosurgeon whose expertise had preceded him. I had known of several people who had used him for spinal fusions and other treatments. This doc practices in a town with a Physicians Teaching Hospital and practices in a mid size town about an hour south of me.
    Your doc has explained it right, the surgery only helps (but little) with the upper butt which is where the SI joint is. I am better since the surgery but I do suffer when I sit much of the time. Some times and days are worse than others. I guess the barometric pressure does have something to do with pain.
    Did your doc explain what happens when you are having the surgery with regards to rods, etc.?
    I have had two steroid injections just to the right of center of the SI joint itself, since surgery; hoping for a miracle I guess.
    They helped after a while (almost 2 weeks) about 60% after the first, and more than that after the second injection.
    I did start out using a walker, but I didn't use it after about the 3rd to 5th day. I had nurses come in, (and physical therapists for about 6 weeks). I had the nurses cancelled because they only took my vitals and the therapist did that anyway. I do have a good pressure gauge and I try and be proactive with my health anyway. I didn't see the need for charges to my insurance when it was absolutely unnecessary.
    I don't think I drove until about the third or fourth week, but I am sure you might be younger and will heal faster. I really can't remember, but I do remember thinking whether I felt right behind the wheel before I drove. Of course I had to sit even uncomfortable, for a while. I sometimes feel uncomfortable with any type of sitting, and sometimes even walking now.
    All and all, I am glad I had the surgery. I hope this post is helpful to you. I know we are all different and what works for one of us might not for the other.
    painloopy replied to charl1942's response:
    Hi Charl, I had the ifuse surgery done on 5/6. So far I've been more aggravated than anything else and really hope I didn't make a bad decision with this. I have a lot of other back issues so when they showed me how to use the walker with no weight on my surgery side leg I quickly realized it will be a tricky situation. I've been home 2 days and have a lot of throbbing nerve pain down the middle back of my surgery leg. No meds touch it except Advil so it's obviously inflammation. My Dr seems to think that the narcotic pain meds I have taken on a daily basis for years is enough for this excessive extra pain. My whole body is sore from semi-hopping with the walker. If I try to put any weight on my side leg yet - pain shoots down from hip to toe. The only semi-comfortable position is laying on my non-surgery side with pillow between my knees. I start in home PT next week so I hope that helps.
    Why did you get injections after the surgery?
    I really hope mine gets better and I don't have permanent nerve damage!
    Thanks for sharing your experience with this!

    DDD, 2 discectomies L4-5
    charl1942 replied to painloopy's response:
    Hi Painloopy,
    I am sure you are having effects of a recent surgery. Maybe most of the nerve pain and other aches and pains will be better when you recover from the surgery.
    I understand your sleeping pattern, it is just like mine. When I roll over onto my back sometimes during the night, I wake up in terrible pain.
    I still hurt a great deal. I sometimes wonder if I should have had surgery, but at least I have one of the problems taken care of.
    I have so many things wrong with me it is difficult to know what to attack next.
    I saw a GYN last week. He did a pelvic sonogram and said there was nothing wrong in the rectal area. He used the sonogram devise and rolled it around internally and said my low back is causing my problem. Man, if that is right, I will have that lovely thought to look forward to. I only hope whatever it is can be done with a discectomy and that I don't have to have a fusion.
    Please let me know how you are doing as you heal. I will pray for your continued success.

    lclibby replied to aprilrose9's response:
    The only thing that I don't understand is when you have a PM doctor that you have been going to for a few years and for some reason you have to change doctors why must we have to go back to square one and start all over again with a new doctor as if you had never seen a PM doctor.

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