I met with Dr. Stark yesterday, thanks to Mark
 

Hi everyone,

An update on what is going on here. Mark and I have been talking, and to put it as succinctly as I can, he was able to get me in front of the SI joint guru doctor, Dr. John Stark, who he met last fall at a spine conference. As luck would have it (or more likely, some higher power at work....), Dr. Stark lives and works in Minneapolis, and Mark not only brought this to my attention, but was able to secure a 3 way conference call with the 3 of us, Wednesday evening, going over my condition, with all my latest films in front of him, again thanks to Mark. We were on the phone close to an hour. Unbelievable. He said he, of course, needed to exam me in person, and "found" a spot on his calendar the very next morning, which was yesterday. I spent well over an hour with him again, looking at films, a thorough physical exam, and we have both come to the conclusion that my SI joints are significant pain generators. Not to say my hip joint doesn't have issues, because I know it does, but what he threw out there was, why not have the lesser invasive procedure of fusing my SI joints, which has been having incredible results with hundreds of his patients, relieving their back pain. Now, believe it or not, one big hurdle I still have to jump, is yes, once again, will insurance cover it? My healthcare provider sucks. He said he has been having some problems with them, but the last patient had my provider and his fusion went through. So, I have hope. I really cannot pay for another procedure out of pocket. It is out of the question. My husband made that very clear last night when we discussed this new, possible turn of events. So, when I left there, I went straight to have another Cat Scan done, this one of my pelvis and SI joints. (which also had an opening, that day, right then.) My Cat Scan of a few weeks ago was addressing my L6-S1 fusion, so he couldn't get a good pic of my SI joints. So, we tentatively have a surgery date scheduled for March 16th, and their holding March 9th for me too, in case my grandbaby arrives early. I meet with him again on March 5th to go over this latest Cat Scan. I am holding my breathe about coverage, and desperately ask for your prayers. I'm afraid to call Betty back (his right hand office lady) and find out, but eventually I will get up the nerve to call her and see if she has heard anything. So, at this point, I haven't called and cancelled my hip joint replacement, but I will postpone it if this is covered, and cancel it, of course, if all my pain goes away. I am not going to attempt another appeal. I don't have the stamina to, and my husband does not want that, since he is a high up executive. It put a big strain on his relationship with the owner of the company when I appealed 3 times, two years ago, for my 3 level prodiscs with Dr. Bertagnoli. (company is self-employed) So there you have it. I am so grateful to Mark for helping pull this whole thing together on such short notice. And when I was talking to Mark last night, Dr. Stark was attempting to call him to debrief him of his appt. with me, so Mark hung up and called me back. This doctor is pretty amazing. All he wants and takes are the really difficult cases. He just wants to help folks like me get their lives back. So I pray this surgery is covered. And thank-you Mark, from the bottom of my heart. I have hope again.

Cindylou

I hope everything comes together for you. You have been through a lot, and it would be fantastic if there were some relief for you. It sounds very promising.

Cindylou,
I hope this works out for you; I know you have been suffering. What a huge surgery to tackle. How long will you be out of commission? Isn't it awful that we have to have one thing after another go wrong. I hope that this will help your pain and the insurance will approve it.
Phylly

Dear Cindylou, thanks for the pat on the back! I'm very proud of what I can do in some cases. The idea that you may cancel your hip replacement surgery and have a much less invasive surgery that is more accurately targeted to a bigger pain generator than your hip is wonderful. Of course, we won't know the outcome and you may still need your hip done, but at least you have the opportunity to go into your surgeries with a complete workup on the bigger picture. Also, you get to do the surgeries in a more appropriate order. If you get such great improvement from the SI surgery that your hip turns out to be a minor problem that doesn't rise to the level of surgery, this will be a great save for Dr. Stark and GPN.

I was considering not going to SAS in May this year as it's sooo expensive.... this kind of experience reinforces the value of what I do. The networking that happens for me at these conferences translates into such a meaningful difference for many patients as these connections are made. I have other clients that may turn into Dr. Stark saves too.

For those of you interested in reading about my recent connection to Dr. Stark, check out this thread:

http://www.ispine.org/forum/ispine/1...ohn-stark.html

I believe that Dr. Stark is the real deal. He seems to be interested in the difficult cases and sees them as a challenge instead of something to be avoided. I look forward to learning more about him and his practice.

All the best,

Mark

Cindylou,

So many of us agree with you... mm also stands for miracle maker. I hope that 1, your insurance covers this surgery and 2, that you find the relief you seek. This two would be your double miracle.

Perhaps this is not the appropriate time, but I just want to point out that good things happen when people, ordinary people, go out of their way for their fellow man. I will soon post my experience with my new pm but the difference between my two pm's is amazing. One doctor goes out of his way to relieve suffering, the other considers it just a job.

Mark has a job but cares deeply. Dr. Stark has a job but cares. I have been treated by both kinds of doctors and the caring ones are worth their fees while the others are more concerned about their pockets and reputations, or notches in their surgical belts.

This translates into every aspect of life. How many of us can't be bothered to perform little tasks that make big differences to world in which we live. I won't go into specifics but everyday we have the opportunity to make life better for someone, somewhere and I now call upon absolutely everyone, EVERYONE, to live up to better standards, to pull from those we admire as examples of doing better or more. Random acts of kindness carry their own reward for both you and recipient. A helping hand is rarely slapped away (except from parent to child who wants independence). Enough of my soapbox.

Cindylou, sorry to have stepped on your thread but you are the recipient of two helping hands and I took the opportunity. I hope everything works out for you. Suffering sucks and you've had enough to last your lifetime. Sending good wishes your way.

Dale

CindyLou:

I sure hope this is the answer for you and the end of your pain. If not the end, at least lessened so that you can have your quality of life back. I also am wondering about the down time and other aspects of this surgery. My pain has lessened considerably but I also have the same pain generator in my SI joint. I am hoping that I won't have to have another surgery but will be looking at yours with an expectancy that this may help me at some point in the future if the injections start to fail.

Good luck with the insurance coverage.

Terry Newton

Congrats CL! Keep us posted.

In regards to this surgery, it is a 1 hour, 1 + hour, at most. It is 6 weeks on crutches, before slight toe stepping weight bearing. It is approx. 3-5 days in the hospital, but his staff says it is typically 2-4 days. I would be in the hospital close to a week for a total hip replacement with a much longer recovery. Again, I might still need it (THR) down the road, but first things first, and in the proper order. I did manage to get up the nerve to call Betty this afternoon about the status of the insurance coverage, and she said she would not know until Monday. She detected the anxiety in my voice and said she felt really good about my case and not to worry. That did give me some comfort. After that, I drove to my dear friend's house, the one whose husband is in stage 4 lung cancer (never smoked a day), as he is declining rapidly all of a sudden. I stayed over there for about 6 hours, just trying to be a comfort to her, while we waited on the hospice nurse to assess his current condition. He came home from the hospital yesterday, too weak for them to aspirate the fluid off his lungs, and he now needs an oxygen tank constantly, and has moved to their first floor guest bedroom, as he cannot do the stairs anymore. I believe she is finally seeing the writing on the wall. He has been fighting this insidious disease for 4 1/2 years. I think he's tired and ready to give up the fight. It's time. He's been able to walk 2 of his 3 daughters down the aisle since his diagnosis, will hopefully live to see his first grandchild born (she is due the same day as my daughter-in-law and son, meaning any day now), if God wills it to be so. It is, after all, the cycle of life. A life given, a life taken. So, I'm thinking right about now I can have 1 glass of wine. What a day. I will keep you all informed as to whether I get this covered, and then, if I do, how this surgery plays out. Terry, I will definitely keep you abreast of this too, as you face the same pain generators as me, minus the hip, of course. Boy, I am so grateful for Mark, and for all of you here on this forum. Thanks for lifting me up.

Cindylou

Again; You hang in there CindyLou. You are a good person and deserve to have a pain free life. I hope this is the answer to your prayers and that God works through the surgeon to repair your spinal disorder.

Have a great weekend though i am sorry for your friend and his wife. It's such a horrible disease that takes people slowly and painfully. I will pray for his peace as well.
\
Terry Newton

SI joint symptoms
 

CindyLou,
You've probably written about them already but I was wondering what they are? It's great that Mark hooked you up with Dr.Stark and there may be such a viable solution for the SI joint pain. I hope if it's fusing of these joints you need that the surgery will be covered.

Please keep us posted and good luck of course!

I'm sorry Maria. I'm not following your question. You're wondering what what is?

Cindy I think Maria wants to know what the SIJ symptoms you have are.

Dr Stark sounds like a knight in shining armour! It's funny how things fell into place with your appt and CT....it must be a higher power at work!

Like Terry Im also having what I think are SIJ issues and have booked bilateral injections next month so Im following your story closely. If it were up to me Id just have my whole scoliotic spine fused and be done with it but my surgeon will not even entertain the thought!

BTW, very sorry to hear of you friend(s)and their suffering.
Cathy

Oh, thank-you Cathy, for that clarification. My symptoms are a throbbing, crushing, stabbing (when I slightly adjust my sitting) pain across low back. You know, ladies, recall back in the day when we proudly wore our two piece swimsuits? And then remember the cute little dimples (bilateral) that were just above the panty line of our two piece bottom? Those dimples are our SI joints. Thank God I'm not a doctor, huh?! :D My point is, it's right in that area. And when Dr. Stark examined me physically, he REALLY examined me. More thorough than any doctor I have ever had. When he had me laying down on the table, face up, he would stretch his arm way under my back, and press very firm (saying sorry, sorry) to test pain generators. And when he pushed on those SI joints to attempt to recreate the pain, I about flew off the table. I think it is definitely Heaven sent, this encounter, and pray my insurance covers this procedure. I believe I should know tomorrow, so I'll keep you all abreast of that. If it's not covered, beware, I will plummet into deep depression, so please feel free to PM, call me, under those circumstances. :(

Cindylou

Hoping you hear good news today CL.

Cindylou,

Hope all the news in the coming week (s) is good. I just got an injection in my right SI joint and it is feeling better (I think).
The SIJ started hurting me a couple of months ago and I couldn't do my mini bridges anymore.
Sorry, about your friend, I have seen way too many people approach their end of life and I am happy to see your friend has hospice.
Hang in there and I hope this helps your pain.

Runner

Well, I never heard from Dr. Stark's office yesterday about whether this SI joint fusion surgery would be covered, and I was in too emotional of a state (see community support post) to call them and hear a possible "no, it's not covered." So, I am holding my breathe on this one. Not sure I want to call today either. :confused: I so don't want bad news. I tried to look it up online with my benefits, but couldn't find it. Then wondered if maybe it had a different name I wasn't plugging in. They did tell me on Friday they would call me when they knew, so I guess I'm taking the very passive approach on this one. Will let you know when I hear. Please keep praying it's covered.

Cindylou

OMG CL, you have been through so much. I hope you hear good news and pray your insurance company will cover this SI fusion. It is time for you to get better.
Best wishes and God bless,
Roblin

Cindylou,

You know how insurance companies are with fusion, they just want to fuse, fuse , fuse and fuse some more.
Thinking about that, it is probably a good chance it will qualify. Each surgery has those codes that match up with the surgery. Even when Blue Cross denied my ADR, I got a hold of a paper that had the code for the surgery and the "certificiation". So don't worry too much.

Keep the faith,

Runner