Back After Taking Time Off (Kinda Long)
 

Hello everyone,

It has probably been a good 8 months since I have posted here. I got myself involved with a community action group which has taken up a great deal of my time.

So what's new with me? I finally received my Associates Degree woohoo! I'm working 2 part time jobs, keep myself busy with a community action group, & I'm steadily headed down the tubes with my back (thanks to being forced to take a gym class in order to graduate).

I had been seeing an OS in Westchester, NY who I really felt comfortable with for 5 years. He was the only Dr. that I had seen who actually believed that I had a problem with my back. We tried unsuccessfully to get BC/BS to pay for ADR surgery. Fast forward to a few years later, still seeing the same Dr., new insurance plan. I had hoped to get the ball rolling to see if I could get the new insurance to pay for the ADR surgery. However, I have hit a brick wall with his office staff who refuses to submit the paperwork. She seems to have "psychic powers" & knows I won't get approved. Since I can't get anywhere with my Dr. or his staff, I made the difficult decision to go elsewhere.

Fast forward to last week. I went to see a very competent ADR Dr. in NYC. I took a 1 1/2 hour train ride down & then the subway out to his office. I then spent about 2 1/2 hours in his office. His office staff was wonderful. The Dr. however only spent, no joke, between 5 to 10 minutes speaking to me. The rest of my time there was filling out paperwork, the exam by his PA, him looking at numerous films I brought with me, & me waiting.

So the discussion was that my last MRI doesn't really show much which is true. My MRI's have always been like that. But the CT scans that I had after 2 discograms show that L5-S1 is kablewy. I guess that didn't matter to him. He suggested an ESI for the sacro-iliac joint. He didn't tell me why (I already know from copies of my medical records). So if the injection doesn't work, then it's another discogram & we take it from there.

And here's the kicker, he wants me to see his Dr's as he trusts them. They are also in NYC.

So now I'm struggling to figure out what do I tell my 2 employers when I have to keep taking days off. I'll be on trains for 3 1/2 hours for each visit. VERY EXPENSIVE & time consuming yet, if he's right, & it is just sacroiliitis, if the ESI helps, then maybe I can avoid ADR surgery.

I guess if there is a moral to this story, it would be that even the best Dr.'s don't spend quality time with their patients.

So now I have to make a decision as to what I need to do. I'm just so flustered about the whole situation. I have to say, I really hate Dr.'s ; )

So enough of my whining. I hope to hit the boards a bit more often than I have in the past. Glad to see that there are still some familiar "faces" on the boards here & I'm glad to be back!

Karin:

I'm sorry to hear that you are still struggling. In spite of it all you've completed your Associates Degree. :D Congratulations.

There are still many fine physicians around. Their field has been decimated from being controlled by managed care (Mangled Care) and, they have to see many more patients to make a buck for all of the difficult schooling and training they have had to go through. That said, I know we all want to feel like we've been heard and, we are more than just a number or a procedure. I've met many personality disordered neurosurgeons as they believe their own press. They become God Like. There is one in my area that has got to be the finest I have ever met. He truly takes time to meet with every patient, talks to you like you are a human being, answers all of your questions, if he does not know, tells you so, etc. His name is Dr. Morris and, he is the exception rather than the norm as far as neurosurgeons go.

One can only hope, that this doctor you went to, will make it worth your while for; his lack of bedside manners will be made up for by his excellent treatment plan for you. :D

Hang in there Karin.

Terry Newton

Terry,

Thank you for the congrats. There's nothing like taking 4 years to get a 2 year degree. I have had so much go on in the past 4 years, I can't believe I have actually made it through. I think most people would have gone mad. I know I've come pretty close several times!

As for the "God" complex of doctors, I have met a few of them. I absolutely love the OS I had in Westchester. He always took his time with me. Listened to EVERYTHING I had to say. Commended me numerous times on the appeal package that I sent to the NYS Insurance Board (which I still haven't gotten back even though they supported BC/BS & it's been well over a year). But like I said, his office staff can be mean & refuses to submit the pre-certification request to my new insurance. I just don't understand how he can allow that to happen.

The OS that I seen last week is suppose to be the guru of ADR. I read a lot of nice things about him & I guess I just expected so much more from him than I got. I was so upset when I left there, it took me a good 1/2 hour before I could even tell my husband what the doctor told me.

I haven't yet made the appointment with the pain management doctor he referred me to for the ESI. I don't know why I'm stalling. Maybe it's the fear it may work & I was wrong about needing ADR, fear of no pay for taking time off of work, fear of losing my job.

While my 1 employer totally understands, my other employer could really give a rat's "tail". It's so sad when you're afraid to do something about your health due to fear of losing a job.

We'll just have to see what happens. Until then, I'll just keep on keeping on & hang in there.

Karin

Sacroiliitis Diagnosis
 

Laura did have radiographically confirmed damage to her SI joint. She tried prolotherapy and rhizotomy, both of which helped her quite a bit. A single or few shots of steroid into an area to quiet an acute flare-up shouldn't cause too much trouble. Repeated use for chronic problems can cause the soft tissue in the area to atrophy and fail.

It's a difficult situation we're all in. Having to find a doctor without being called a doctor shopper or a hypocondriac. Let's be honest, most spine doctors don't do nearly enough testing before they prescribe treatments, that is if they prescribe anything. Many just dismiss chronic pain, while pocketing your money. (that's why lawyers were invented)

On the otherhand if you're experiencing chronic pain, you can't ignore it. The ramifications of ignoring it can cause you permanent disability like the shape I'm in. From the sound of it you're nowhere near the point half of us are in. We can't sit or stand 15 minutes without excrutiating pain, much less sit on a train for 3.5hrs. Without sounding rude, I almost wish I was in your shoes.

Let's hope you don't have DDD, but the only way to know for sure is to get an MRI. if an MRI doesn't show anything maybe the resolution is crappy, or they're looking in the wrong place. I ASSume you already have x-rays at your lumbar and SI joints? X-rays won't show tissue damage, but it can show asymetric joints.

Joint pain can be a number of things; nerve root interference, damaged joints tissue, damages soft tissue connecting to the joint, etc...

The fact that a doctor can corroberate your pain is the first step. The next step is to perform as many tests as possible. If this guy won't then you need to find someone who can take his notes and build on it wihtout going in the wrong direction.

If an employer doesn't care that you're in chronic pain and is willing to lay you off then they don't know the law unless, of course, you live in a southern right-to-fire state where they don't have to give any reason at all. Then you're just f%^&*$.

I think it's against most state laws to fire someone due to their disability. Just make sure you have a note from your doctor stating your limitations. If your employer lays you off then that wasn't going to be a place you wanted to work at when you really become disabled. That's the worst situation to be put in when you need the most help.

In the meantime, I suggest you find a chiropractor who is licensed to interpret x-rays and see if they can work with your SI joint until you can find a specialist who will perform more testing.

Karin, thanks for posting. You've suffered through years of pain and discomfort; I am sorry.

Regarding the SI problem, sorry to return your question with a question -- but the -itis issue of the SI joint is rare in this community, at least during the last four years. Do you have any idea if this was a singular diagnosis that was made that simply propagated through the system? This is a tricky diagnosis, IMHO. If you can, please tell us more about how this diagnosis was made.

There are many folks here that have had a mix of SI issues, but they all seem to share one unfortunate element: complexity.

Some Background Info
 

Quote:

Originally Posted by ZorroSF (Post 78201) On the otherhand if you're experiencing chronic pain, you can't ignore it. The ramifications of ignoring it can cause you permanent disability like the shape I'm in. From the sound of it you're nowhere near the point half of us are in. We can't sit or stand 15 minutes without excrutiating pain, much less sit on a train for 3.5hrs. Without sounding rude, I almost wish I was in your shoes. If an employer doesn't care that you're in chronic pain and is willing to lay you off then they don't know the law unless, of course, you live in a southern right-to-fire state where they don't have to give any reason at all. Then you're just f%^&*$. I think it's against most state laws to fire someone due to their disability. Just make sure you have a note from your doctor stating your limitations. If your employer lays you off then that wasn't going to be a place you wanted to work at when you really become disabled. That's the worst situation to be put in when you need the most help. In the meantime, I suggest you find a chiropractor who is licensed to interpret x-rays and see if they can work with your SI joint until you can find a specialist who will perform more testing.

I have to say, I was a bit put off with your remark regarding my pain status.

Each person experiences pain differently. What one person may consider excruciating, another can consider it painful but able to deal with it. It wouldn't be proper to say that you wish you were in someone elses shoes, unless you yourself have walked a mile in theirs.

I don't usually go in to this much detail but since there is a question about my pain, here it goes:

• I can not stand in one place for more than 10 minutes without being in excruciating pain.
  
• I can't sit for more than 25 minutes without getting pins & needles in my foot.
• Lately, just driving my car brings tears to my eyes.
• I can't allow anyone to massage my lower back or actually have a doctor touch it without screaming & crying.
• The list just goes on.

I have been classified as partially & permanently disabled. But I push through the pain because that's just the type of person I am.

I have spoken with the manager of the company that I work for. She has been incredibly understanding with regard to my situation. However, my supervisor is a little less understanding.

New York State is an "employment at will" state. They can fire you for any reason. So, if I wasn't in the good graces of my manager, she could have canned me for all of my absences of late. I can probably kiss my raise goodbye, but as long as I have a job, I'll get over it:sulkoff:

As for the chiropractor, I wouldn't survive the pain of an adjustment. If there is anything left of the IDET repair that I had done in 2004, I think the twisting of an adjustment will just totally unravel it.

So, with all of that being said, let us move forward. I feel better that I have explained myself a little more & hope that this explains where I am coming from.:beer: (We need an icon where the smiley's are shaking hands)

Blast the SI Joint!
 

Quote:

Originally Posted by Harrison (Post 78217) Karin, thanks for posting. You've suffered through years of pain and discomfort; I am sorry. Regarding the SI problem, sorry to return your question with a question -- but the -itis issue of the SI joint is rare in this community, at least during the last four years. Do you have any idea if this was a singular diagnosis that was made that simply propagated through the system? This is a tricky diagnosis, IMHO. If you can, please tell us more about how this diagnosis was made. There are many folks here that have had a mix of SI issues, but they all seem to share one unfortunate element: complexity.

Rich,

Indeed, the Sacroillitis Diagnosis was a surprise to me as well. To this day, NO ONE has ever said anything to me about it.

When I went for my 2nd surgical opinion at Beth Israel, the Dr. down there sent me for x-rays. When I requested the reports for the x-rays, it stated something to the effect of sclerotic changes in the SI joint, more so on the left than the right. X-rays suggest possible sacroillitis.

I was diagnosed as having a positive Patrick's Sign years ago. Also had an increased SED rate around that same time. My previous OS said the Patrick's Sign just meant that I had pain in the hip. I've also mentioned to several doctors that I have swelling in my right thigh since my MVA. No one has ever treated me for any of these things until I went for my 3rd surgical consult in NYC in September.

I had an injection into the right SI joint (since that hurt more than the left) of just numbing medication to see if that releived any of my pain. About 30 minutes after the injection, the Pain Mgmt. Dr. pressed over the right SI joint & I swung around & almost punched his lights out. So, in essence, the injection was only about 20% effective for me.

I was told by the Pain Mgmt. Dr. that it is not uncommon to see disc issues along with SI joint issues. When I explained to him the pain that I was feeling, he told me that it sounded like a had issues with the disc as well.

Karin,

First of all Welcome Back !!

It looks like you've had a lot going on with your journey to find a solution to your pain. I see from your signature that you have surgery scheduled for this month.

What exactly are they expecting to do ? What levels of repair are they looking at?

Are you still seeing the docs in NYC or someone else ?