3 months and still hurting, question re SI and others

[user904]

Hi Everyone,

I've posted here before when I was in severe pain. Well, I'm still in pain, but my pain level has come down to a 4-5 and some days an 8 instead of 10 in the first month and a half. So far I have had 2 Epidoral Shots, 5 weeks of acupuncture, numerous medications that do not help at all and today I got my first SI injection using the x-ray to inject it in the right spot. I had an MRI done in Noveraber and my herniated disc in my L5-S1 is no bigger than it was in June 2009 when compared to my other MRI.

I have seen 2 neurosurgeons and 1 orthopedic surgeon and have been going to my Pain Management Doctor since Noveraber 6. The two neurosurgeons are not convinced it is my herniated disc, because they said that I have alot of room there which is a good thing. My orthopedic surgeon Dr. feels it is the disc and my PM doctor said the same thing only this time he said that he thinks it might be my SI joint. I have had severe pain in my lower back on my right side and I could not sit, walk or stand long at all without excruciating pain. After I had my 2nd epidoral the pain came down a little but still have really bad days with pain. I have not had one single day yet without pain and for the most part, I still cannot sit long and need to get up and walk around like every 10 minutes. Walking up and down steps is a killer for me because I never know when the pain will hit me and it is usually on the steps and I am stuck there in severe pain. I cannot arch my back what-so-ever as the pain is so severe it feels like someone is putting a knife through me. I cannot lay down in bed and turn without excruciating pain and this has been going on for over 3 months now. When I am in the car and need to turn to get out of the car the pain so so severe that I literally scream out loud. I think I am going to try and find one of those round discs that swivel to get in and out of the car to help me with that.

I have been waiting 8 weeks now for approval from my health insurance to have a Nuclear Bone Scan done of the lurabar and pelvis area and I am so scared of what they may find. One of the neurosurgeons that I have seen said that he thought I might have a fracture and that is why he wants me to have this test, but wouldn't a fracture have healed by now. It's been almost 14 weeks now.

I am still out of work and I can't go back to work yet because of the pain. I am at my wits end and so tired of this pain and I currently take 3 mg. of dilaudid for the pain but that doesn't seem to help much. I am taking Flexeril also and still in pain and also Nabmetonen (spelling) for arthritis, since the MRI showed arthritis also. I hope I can return to work soon and of course have this pain go away but I am fearful of never finding out what is truly wrong or being able to fix it and having to live like this. I can't go anywhere as I am always in pain and when I walk, it is very slow. Has anyone else had these problems and found what the problem was? Also, I was wondering if anyone has had an SI injection and how long it took before they felt relief? Sorry for the long post but I would truly appreciate it if anyone had any other ideas.

 

[Frosty6]

I'm sorry to hear you are in so much pain. It has become the norm for me with increasing pain as well. I am in year 8, Fusion surgery 2006 that did not help my pain etc.

It could very well be your SI joint. Getting it diagnosed properly is tough. I had a test done by my PM after having an injection in that area that leaked right out and into my legs. Creepy experience because as I got off of the table I went straight down because my legs didn't work. The nurabing shot nurabed my legs! It wore off in about an hour but scared me to pieces! There are xrays they can do where they put you in various positions that will show if you have problems there. Might is like a right angle instead of parrallel. If after this bone scan you don't have a firm diagnosis, research the ortho and neuros in your area and look for one that specializes in SI joint. I have yet to have mine dealt with and I have learned from others it is due to their not specializing in it. We have one doc here that is the #2 guy in the country but of course he doesn't take my insurance.

I hope others will post here and share their knowledge because they have actually gone through the diagnosis and treatment of SI joint replacement etc. Back issues are a long and frustrating process for those of us that suffer daily. I wish you much success!!

 

[janiee08]

There is actually someone who posts here by the name of Brendaks who has undergone fusion of the SI joint a while back. Maybe you can look her posts up and get some info that way. Oh, and it just occured to me that another person by the name of Sage just had that surgery done. You'll see her posting right here on this page. Hope this helps!! ....Janiee

 

[Sage48]

yup, I am here...I check in every day right now cause I am recovering from my revision SI joint surgery. From what Frosty said, there is a Dr. here who does SI joints...she actually recommeded him to me!! They do a series of 2 SI joint injections, then immediately after the injection, you have a CT scan to see if the fluid from the injection leaks out...if it does, you have disrupted the SI joint. The injection only helps the pain from the SI joint for an hr. or two...it isn't ment to cure it....unless the put steroid in the injection...then it may help the pain for a while...
The "new surgery" for the SI joint is much easier that the old one...3 roRAB placed in your lower back....yes, it still hurts, but nothing like the old surgery...then you have to avoid putting any walking pressure on the side of the surgery for up to 3 months...I am at week 7 right now...laying around...using the walker to "bunny Hop" around the house...and have a little electric scooter which I use all the time..the bunny hop is too tiring. This is not a surgery anything like for discs...entirely different... I wish you luck in your search...I believe that my Dr. said that another DR. in NH does the same surgery....this is just trials right now...but if you are lucky you will find someone in your area...look at SI Bone on the puter it explains it all..

Take care.

Sage

 

[user904]

Hi Sage,

Thanks for responding. I really wish you well and at least you seem upbeat about it all. It's good to have a good attitude about everything. It has only been 6 days since I had the SI injection which was done with an anesthetic and cortisone. I had it done last Monday and by Wednesday I felt the best I had in over 3 months and so far, I had a decent 4 days. I want to return to work on Tuesday of this week after being out for the last 3 months. I finally got the approval for the Nuclear Bone Joint Imaging test and am scheduled for February 10. Do you know if this will show anything with the SI joint or anything. Right now this shot is helping, but I fear it wearing off and going through all of this again as right now I have no concrete answers as to what caused all the pain. If you don't mind, could you tell me what your symptoms were that they figured out it was your SI joint? I always had sciatic pain and herniated discs for many many years and suffered like a dog with leg pain and back pain for many years and have been seeing Chiropractors from 25 years ago because back pain and the last 8-9 years with seeing orthopedic surgeon for pain and chiropractor's again, but this past year has been unbelievable with the last 3 months, I felt like I was being tortured. I would have exteme pain in my right side of my spine like someone was stabbing me and could not sit, stand or walk long at all and absolutely could not sit and was not able to sit until almost 2 months later after I had a 2nd epidoral shot. All my meals were standing up or laying down and whenever I got up off a chair, I couldn't even put one foot in front of the other without yelling out loud in severe pain and required the help of my husband to get me from one spot to another. Is this what you experienced? Like I said, I have this Nuclear test on 2/10 and hope that I get answers from this and I pray that this injection is not short term. I really need to get back to work because my sick days run out in two weeks and we do not have any disability where I work. Again, thanks for responding Sage, but I would be interested in knowing what your symptoms were if you don't mind sharing. Thank you so much and I hope you will be feeling great soon. I will keep you in my prayers, as I have along list and we could all use prayer. Bless you and feel better!!

 

[Sage48]

I am so sorry that you are having all of this....hate pain...really hate it.. ok...here's the short version..hope it helps you. I fell in 2002...when I hit the floor my back was arched and to the left...thought I broke my neck...seriously and my lower back just was really bent the wrong way...after that I developed problems with my neck (far lateral herniation...fixed after 14 months...no problems with it since surgery in 04)...but the DRs. could not figure out why I had pain/serious throbbing ache in my lower back-right side - down my right outside leg/knee and into ankle...and across my instep...BUT my little toe would have such a burning pain...I really wanted to cut it off...
I had so many xrays/MRI's/CT scans and all kinRAB of injections - I was uncomfortable sitting...it caused my back to hurt...I was uncomfortable walking...and I would wake up during the night...I call it uncomfortable...but it was PAIN....my life was not my own..it belonged to this problem...and I have been fighting to get my life back..now after the second SI joint fusion, I am so hoping that this will work....I am still aching/hurting in the area where they took the hardware out...I am still on hydrocodone 3 times a day....but my leg - knee - foot - and best of all the little toe are not hurting...so that is a positive. I have to have a good outlook...being down does no help me or anyone around me...it is unacceptable - my husband is wonderful...he has put up with me for several yrs. of this....many would have left...seriously...but I have to laugh...otherwise....the tears would be there...can't have tears...red face/splochy/and swollen eyes...runny makeup...very bad..worse... I am not trying to make light of this...PAIN is no fun...and I fight it...and sometimes I can't fight it and I do cry...but I try to see the improvement...and celebrate the no pain in my little toe...that is improvement.. I had many many facet/injections for my discs/and finally the injections for the SI joints. oh yeah...those nerve injections...EMG (?) something...I clirabed the wall in the room while they wre doing that...very very nasty...my husband was sitting there watching me yell at the Dr. to take out the needle...yeah...that was fun, I did not want to do that one again...but they talked me into it...after that second test, my husband said he would not let them do that one to me again..ha. The SI joint injection & scan afterward is the diagnosis for SI joint disruption...if the liquid in the injection is shown to be leaking out of the joint after the injection that is your problem...the SI joint. If the joint stops hurting after the injection (in my case they didn't use sterioiRAB) for a short period of time...like a few hrs. then you know that is the problem. It is a long road for diagnosis for SI joints and there are so few competent Drs. who do this diagnosis and surgery...very very few...so check around and make sure you have a qualified DR. I wish you luck in your search...and hope that you can find some comfort soon...
Sage