The Internist recommends SI joint fusion surgery for the second time, and other news

General
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So I talked to the Doctor about the 'clicking' sound of my lumbar spine, unsure if it was the central canal stenosis or the SI joint damage causing this, and he again recommended the procedure where they use surgical cement to fuse the Sacroiliac Joints, he had no doubt this was the cause when he pushed on them and I went through the ceiling!

http://www.spineuniverse.com/conditions/sacroiliac-joint-dysfunction/surgery-sacroiliac-joint-dysfunction

If/when this happens, I will have to stop the Enbrel, and in many instances, it is ineffective when restarting it. Just cannot heal from something of this magnitude on an immune suppressant drug!

The Chiropractor has already disagreed to this, we'll see what the Rheumatologist has to say in March, probably more MRIs, before he comments!

I was correct in thinking that the seasonal mold allergies have turned into bronchitis, so back on antibiotics, and 'knock you down cough syrup'!

My Mom is being released from the Physical Rehab of the Nursing Home on the 19, goes back to the surgeon on the 21. She has worked exceptionally hard in PT, only problem/concern is the rod on the inner part of the leg has slipped, so I told Doc today that I would like her to have a bone density scan. She may also need to take Fosamax to strengthen her bones to hold that hardware. Take good care of your bones, take that calcium citrate!

Husband started to build the ramp in the front of the house today for mom, he is leveling things up, digging post holes for the railings, after that we start moving the house around to get her a bed downstairs! We love her and care about her, and will make this work!

So in summation, life is good, but it just never gets any easier! Be as well as you can be!

Renie, I miss you!

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My mother did the full year of the Fosamax regiment and ended up with tiny holes in her bones like pin pricks. It is one of the side-effects. I would research it carefully.

SK, I sure hope you and your medical team get your issues worked out. I appreciate all you do for us. Gentle, loving hugs.

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Hi tricky!

So sorry your mom went through this! I certainly had my own reservations about this med, and let both Doctors know it, they insisted I needed it and it was a good drug, although I have heard my share of stories about it! I finally gave in and began to take it with the understanding that they would keep an eye on me!

Yes, I hope I can get to a better place too, and believe I do have a good medical team, though they do not always agree!

Thanks, I try hard, this site and all of my friends mean a great deal to me!

Hope you are as well as you can possibly be!

Sending some love,

SK

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You will have to let us no what all the doctors decide. I am glad your mom is coming home. I am glad your husband is doing better and is building the ramp.

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Glad it is better for your Mom, sounds like your visit was as productive as mine. Spent the day at the pain clinic, saw the doc and found out what the plan is going to be..nothing today, cause they had not cleared it with the insurance...Geez, thought that is what I was there for, something to help the pain! The doc is talking about lumbar nerves and discs..nothing today! Keep up the smiles and give yourself some slack, it is bound to get better...but I have been saying that for over 20 years. Hugs and love, praying for some restful sleep for you! Darlene

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Hi Darlene,

Sounds like they have a plan, and I hope the Insurance comes through. 20 years is a whole lot of suffering! WHEW! I'll be thinking good thoughts for you!

Wishing you well,

SK

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Hi just wanted to tell you my Aunt went on Fosomax and within one year developed Rheumatoid arthritis , among other bone issues . Her family found out to late how the medication was affecting her. She suffered for years with RA ( among other illnesses) and lost her battle last Spring . I am told it is as dangerous as prednisone for your bones . I hate speaking up like I am a know it all ,but if I did not say anything I would feel bad for not warning you . Medications are a blessing at times and at other times very confusing !! My best to you and your Mom !!

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Thanks for the heads up, Susan! Don't feel bad, I am one of those people who want to know!

Sorry about what your Aunt went through, I still don't feel good about taking it. A friend sent me some information on alternatives, so I need to sit down and read it!

Allergic, one of our nurse members, has a friend who used AlgaeCal and reversed Osteoperosis in a year! I'm definately looking around for other answers. Of all the meds I take, this one just doesn't sit well with me!

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SK , I am glad you are seeking alternative options . I hope they are affective and do not have such serious side affects. Do not want too be Miss Doom and Gloom but do to a medication called Serzone ( nefazodone generic) I just had Oral surgery and four of my teeth were removed. So angry that they discovered this medication causes tooth decay. I went to dental appts faithfully and the dentist could not understand why I kept getting cavities at my age . ( then 48 ) It was not until I went to a very expensive Oral surgeon that I found out about the Serzone damaging peoples teeth. It is so costly to have Implants and I wonder with Fibro if they are even healthy to put into my body. I have enough issues do not want to discover more after I have then put in . They should re name this disease to "we have no idea what it is and what to do " Have tried so many meds . only to be disappointed time and time again . Well have a nice day and be very good to yourself !! Going to take my own advise and pretend I do not have a care in the world !

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Oh no Susan, you have really been through it! I found out my tooth loss is most likely linked to Sjogren's Syndrome, and wear a full upper and partial lower, I passed on implants. Sometimes you just don't know until years after.

That's how I found out about tearing both achilles tendons, not at the same time. This is a crippling experience in itself, as you are in a cast with your foot pointed for at least 2 months, which throws your entire body out of alignment and keeps it that way. I had a terrible time, even with very good physical therapy. It was decades ago that I traced both back to the antibiotic Levaquin, taken for Bronchitis. When the arthritis and fibro are kicked up, especially by weather, they feel like they are torn all over again.

It's always something!

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Hey Rattled,

Oh, I've had the epiderals, believe me. Had them to the point I just couldn't be touched anymore! I have come to the fact that if I live long enough, I will have to go through some kind of spinal surgery, lumbar and cervical, it is inevitable, but they'll wait until it's utterly critical to do it!

This is the time of year that I will have to use narcotics much more, as all of this is so weather related! I know, I always fear for those who give up pain meds all together, as there will come a time again, when they need them, and will play hell to get them again. My GP and DC consider chronic pain to be very damaging to a person, a disease in itself.

My Rheum will light dose me on everything, however my GP tells me if I'm going to take meds, take enough to make a difference for the better in how I feel. He took me off the Sonata for sleep, (said it was worthless) told me he was going to start me on Ambien.

Between the coughing and the weather, I've been a hurting pup! Only thing I did today was my Mom's laundry and my husband was kind enough to take it up to her!

My grandmother had Gilliam Barre syndrome, psoriatic arthritis, severe osteoperosis, and probably many more autoimmune diseases that were undiagnosed, she had also been in a car accident that no one should have lived through, I'm sure she must have had Sjogren's, TN, Fibro too! She sufferered horribly onto her upper 80's.

I know, there are so many things to consider, so many opinions to weigh, and it's all always so COMPLICATED!!

Thanks everyone for helping me to kick all of this around. I am going to talk to 'lamb', our resident genius on the Psoriatic Arthritis site about this, maybe post and see what everyone there has to say about this surgical cement surgery on my SI joints, keeping in mind that surgery is going to be needed eventually on the central canal stenosis, which is right in the center of the Sacroialic Joints!

Those =)'s get harder by the day, huh?

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SK, I am so sad you are going through the SI joint issues, and can totally relate, there myself. Plus bad lumbar, and OA of spine, DDD, and congenital stenosis. Have already had a c- spine fusion, and while thankful I'm not paralyzed, will say they did not prepare me for weird and permanent after effects of decompressing my spinal cord. My reflexes are extremely slow, my grasp no longer there or fine motor skills, and way more. If my surgery had been done when needed (Dr dropped the ball and it should have been done at least a year earlier) I would not face these added challenges. So waiting until the very last mnute is not always best choice. I often have to wear a soft neck brace to give my muscles a rest.

Please keep us posted on how all this goes for you? I want you pain to be gone, but not for other issues to come about as a result. I think you are very wise to explore all options. I'm hitting an evaluation tomorrow, the 13th, to see if PT can help. I don't consider locking up unable to walk and in tears in pain as acceptable.

You are a great daughter to take care of your mom so well, and your husband is awesome to pitch in the effort. Love can move mountains. Wish more families were this way. I took care of my own mom at the end of her time here on earth, we said goodbye 1 week after my last child was born, and not a day goes by I don't ache for a hug, to see her smile. She loved butterflies, so I have ever since planted things each year to bring them here, kind of like hearing her say I love you when they come around for nectar and water!

Take great care of yourself, and thanks for all you do here. You get to go into the Phenomenal Woman Club!

hugs, Perplexed

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Hey ohso,

Well, well, aren't you the charmer! ha!

My Mom is a butterfly lover too! When we bought the house we wanted some kind of barrier between the house and road, and chose butterfly bushes, alternating colors, and I thought of her when I chose them. Now that said, I did not know how 'fragile' the limbs are, we get sheer winds here and those winds just break them to pieces, if I were to do it over I would have chosen another bush that would draw butterflies and humming birds that would withstand the winds a little better, like Crepe Myrtles, or Lilacs. Oh well, live and learn, she loves them even if they are torn up, and the great grandson loves for me to take him walks down there to see all of the butterflies!

Sounds like you have been through it, girl! Back problems, and the pain and function problems are beyond words, no matter how eloquent you can possibly be! My heart goes out to everyone with a bad back, and there seem to be lots of us on the planet!

Because of my difficulty riding in the car, and constantly crashing every time I push to get better, I have not been approved to go to PT, just the pool, and the Rheum took me out of there, told the Y I could not return without his consent, so I just stretch here at home. I did inquire to the PT dept at the area nursing home where my mom is as to them handling someone inpatient and they said not. Parking is already a huge issue there, surely that is a factor, but it's 5 minutes away instead of 30-45. By the time I ride that long, I can barely stand up or move, and it's the SI joints that just KILL ME to ride! So they won't send me, but my DC has given me the stretches I need to do!

My Mom will have in-home PT when released, and I may do some of the things with her, as surely she will need to continue even after PT ends! It's always nice to encourage each other!

Not sure if you know about this yet, but my Rheum prescribed and anesthetic spray for my back, to help me ride, it's Ethyl Chloride, and it may help you as well. You have to use it sparingly, but it's so nice to have when you need it! You surely have the x-rays to qualify from the sounds of it! Here is the link!

http://www.drugs.com/drp/gebauer-s-ethyl-chloride.html

So nice to have you in the group, glad to get to know you, and thanks for the kind words!

Wishing you well,

SK

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You need to see a spine surgeon and be evalueated,I suggest a teaching hospital if there is one any where within a 5 hour drive ,as they have the latest and they have a vested intrest in being the one who is right ,when the private practice are good but are also dealing with everyday life. The one at a teaching hospitall has a teaching surgeon their and has to bette better than all the students.This is one surgery where you want the latest treatment evalueation even if you end up with another surgeon.Good luck

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Hi SK,

Wow, well that's a barrel-full of bad news to have thrown at you. I really hope that you do NOT need the surgery. Wouldn't it mean that you would have great difficulty at bending at hip level? I guess there are worse things, but still...Would any rods be inserted at that time? Would the surgery lessen your pain at all?

I'm not wild to hear that you're taking Fosmax either and I hope that your doctors will be real, real careful with you.

Ooh, I'm sorry that your allergies have turned into bronchitis. I hope you can get it under control quickly. Do you need to use an inhaler? They are great for quick relief, at least when you have asthma.

Your husband is a sweetie and I'm sure your mother will really appreciate that ramp when she gets home. Will she be released anytime soon? I'm sorry that she's experiencing difficulty with the rod in her leg. It seems to be a family tradition. She's come such a long way though in a short period of time, so I hope she can get finished up and discharged so she can return home.

It was good hearing from you, SK. Its nice to see you feeling a little bit better. We don't need major miracles here, we just need baby-bird sized ones!

Gentle hugs,

Petunia

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I have same kind of problem in my back. I really doubt that i would ever do a fusion. Just me...i see to many done and people are still in great amount of pain. To just stop clicking....and go through surgery well, i personally hate being in the hospital or having surgeries.

I would hope you see orthopedic doctor who specializes in this exact kind of spinal problem. There normally is at least one even in smaller towns. But take the time to read the stats on people before this surgery and afterwards...how many say they get relief. They are very low.

I have been told not to let a chiropractor doctor near my spine since it could break with pressure applied in wrong place. I have used them in the past and they did help my back if it just went out. Now..with how you said how painful it is to have anyone touch your spine area...well how can the chiropractor help you since they do manipulations? Just wondering, maybe you can give me some helpful ideas.

Also...try to see orthopedic doctor who specializes in back but is not surgeon only. Of course if they are surgeon odds are they will say surgery. I am not even sure about the injections after reading article in SF newspaper about people having damage done so their intestines drop and/or they get so much worse pain. I have not heard about risk of dropping your intestines from getting shot in spine to help with pain....most people had negative problems due to interns gave the shots or was a doctor who had not done very many.

But really check out about fusions and pros and cons....stats about how many they help. I think that will help you decide.