New kid on the block

[TiredofPain]

I hope I'm posting this in the right place, if not, I apologize in advance.

Greetings from Texas. My name is "J". I have spent the approximately the last month reading threads on here as well as others as they may or may not relate to my current situation. It's unfortunate that we need to be here, but I'm grateful that this forum exists, as I have found it to be very informative. I’m a 43 year old male that has spent the last 17 years with low back pain. I have done physical therapy, chiropractic therapy, massage therapy, pain management, injections, I guess much of what most people do before moving to more aggressive options. I’ve had countless xrays, which are always inconclusive. An MRI in 2000 or 2001 showed mild buldging in the discs in my lower back.

I retired from the U.S. Navy in Dec. 2007, and fortunately for the last 10 years I was in supervisory/management positions that allowed me to work at a desk and live with the problem as it progressed. Unfortunately, it has progressed to state of misery, where I’m unable to do even the easiest tasks. My final breaking point was when I took out the trash and unloaded the dishwasher and had to lay in bed for 1 ½ days. Please bear with me as I attempt to be thorough, yet short and to the point. In 2008 at the advice of a friend I went to the Texas Back Institute. Xrays once again inconclusive, but the Dr. ordered an MRI. When I went for the MRI results the Dr had told me at that point that surgery was an option. However, he wanted to avoid that and would prefer more physical therapy. The thought of surgery scared the daylights out of me, so I agreed with him 100%. So, some more PT, and chiropractors, which did give short term relief. But, once again, at the first part of this year I reached my breaking point and returned to TBI for follow-up and potentially more aggressive treatment. Xrays, well we know what they are going to tell us, but I guess too much is better than not enough. However, the MRI this time showed worsening in as I now know to be the L4/5, L5/S1 discs. It was explained to me that there is a procedure called a Disco-gram that could be more exacting in determine if they were truly the culprits of my pain. Me being the silly person that I am told the doctor I could get up and dance right then and there and tell him that it hurt. He looked at me oddly, and I said you know “Disco-gram”, like a singing telegram, but I wouldn’t charge him. I was told honestly, that it was not a fun procedure. The way I seen it, no pain is fun, but if it is useful, then let’s do it. When I got home I read as much as I could about a Discogram, to almost scare myself to death. Most of what I read was horrifying experiences.

At any rate, I went through with it. Fortunately, although not something I would prefer to do again, my experience wasn’t as bad as I had read. The first disc that was pressurized caused no pain. The second on the other hand OMG, and the same for the third. As soon as I had my out of body experience from that pain the Dr putting the dye in my discs, said “That should be enough”. I thought that was pretty nice of him. Thank goodness there were only 2 discs that are gnawing on me like gremlins with sharp teeth and big hammers. I had to travel to a different location for the CT scan, but was medicated well enough that it wasn’t too bad. Blah, blah, blah. I must add that I was as hungry as a hostage, so my wife dropped me off and went and got me some food. When I returned to see the Dr at TBI for the results, he was very very thorough. He spent a lot of time explaining everything in terms that I was able to relate to. He drew pictures to give me a visual understanding. The tests also indicated subluxation above the damaged discs. He explained my options. 1. Was a replacement disc at L4/5 and fusion at L5/S1. 2. Was fusion in both. The downfall with option 2 was less flexibility, but I would still be able to bend and touch the floor. I don’t know much about backs or the surgery that may be done, so I asked for his opinion as to which would be the better option. I have to say, that I have a great deal of confidence and respect for the Dr. He said that for my situation option 2 would be best. He explained why, it got a little technical at that point, but again I have full confidence in his ability and trust that he would not guide me in the wrong direction on this. Well, I have scheduled to have the L4/5, L5/S1 fusion surgery be performed on the 26th of April. I’m nervous, yet anxious and excited to get it done. I’ve come to the determination that the potential results outweigh the risks. I must add that my friend that advised me to go to TBI in 2008 had surgery on 26 December 2008 and played a round of golf less than 6 months later. He currently lives pain free with the exception of some stiffness/soreness on occasion. He is 20 years older than I, not that it matters, but told me on Friday that I without question will not regret my decision.

The purpose of this post, is to get some other advice/opinions/words of wisdom, etc. etc. etc. from people that have lived through the hell of back pain and have had surgery. In closing I wanted to mention one story that has been inspirational if you will, and that is Kathy. I want to say congratulations to you for your success, and more importantly congratulations to you and your family on the soon to be new addition of a son to your already beautiful family. It is simply AWESOME that you have been through what you have and are now able to have another child.

Thank you all for allowing me to ramble on, and I look forward to hearing what you have to say, The Good, the Bad and the Ugly.

“J”

[dshobbies]

Hi J and welcome,

Sorry you had to jump through hoops to get a diagnosis but most of us have similar stories.

TBI has a very good reputation. I do have a question though. Is there a specific reason your doctor recommended a 2 level fusion as opposed to an ADR on top of a fusion?

The reason I ask is two-fold. First, ADRs are specifically motion preserving and you move alot from L4/5. Second, with a 2 level fusion, L3/4 would have to take on the burden for L4/5 not moving and a common occurance would be that disc going bad too. This could also happen with and ADR at L4/5 but not as quickly and perhaps, in both cases, not at all - just more llikely with a fusion.

J, you have one chance to do this. Please ask your doctor why he recommended as he did. Since he said you could go in both directions - there seemingly are no contra-indications for an ADR so the question why is an important one.

Good luck, Dale

[TiredofPain]

Hi Dale,

Thanks for your response and very important question. I will re-ask that question, but as I remember the situation it was that the subluxation above 4/5 was small concern or mention because of the motion. If I'm not mistaken, the ADR would possibly cause additional problems in the future because of the mis-alignment, thus fusion the better of the 2 options. Additionally, my insurance will not cover the approx $21,000 for the ADR. Again, I will re-direct the question. He shared A LOT of info with me and I may have something twisted here. No pun intended.

[Maria]

J,
First of all~ no one can guarantee the outcome of surgery so I'm sure you're aware of this and secondly different people have different surgical outcomes even with the same surgery and different healing timelines. Don't expect your timeline to be just like your friends or better just because you are 20 years younger. Hopefully it will be a good outcome and a smooth/good recovery for you and whatever procedure you have done.

My recommendation however would be to get a 2nd surgical opinion (and honestly I'd get a 3rd consultation as well).

The reason I say this is if for whatever reason the surgery fails or doesn't end up so well you will at least feel like you got several opinions (not from same doctor or someone in same practice) and did your homework/research.

I hope you will do as well as the surgeon hopes you will w/o any unforseen complications or problems however I do feel it's best to get a few opinions even in the most straightforward of cases.

Good luck. BTW I've had 2 spine surgeries and had 3 discograms and had at least 3-5 recommendations for ADR at 2 levels and/or ADR and fusion or multi level fusion. I had a long history of back pain and back probs and by the time this surgery was actually authorized again (WC) I felt better so didn't have another surgery.

Although I'm used to having flare ups with a day and half down time and don't think anything of that as I've had flare ups that used to last one to two months and spent that much time in bed (and that was after my 2nd spine surgery failed).

I'm not knocking surgery for those that it's indicated just recommend several surgical opinions. Good luck!

[TiredofPain]

Maria,
Thank you for the response and recommendations. I certainly understand and do not expect the same outcome or recovery as my friend. It is just a positive re-inforcement for me as to my decision to move forward in a more aggressive manner. And a close personal friend of 10+ years sharing the experience of the process is comforting. Also, the unfortunate reality is that there are no gaurantee's as to what the outcome will be for myself.

You are 100% correct about getting 2nd and 3rd opinions. I have looked up some other spine specialists in the area and will be calling them tomorrow. I just wonder how willing they will be to see me if I tell them up-front that it's for the purpose of a 2nd opinion. I have the CD's with the results of my recent MRI and the CT-scan after the discogram. I would like to think that they would willingly review the material and give me their professional opinion. Thank you very much for bringing that to my attention, as I had tunnel vision of the light at the end of the road.

Sorry to hear that you had 2 surgery failures and continue to have flare ups that put you down. Hopefully, they are few and far between.

Thanks again.
J

[jsewell]

Hi,
well my last 2 surgeries were pretty much no brainers, they had to happen. The last one in Jan (i am still in a neck and back brace) my head had actually fallen off the train .
In dec i could barely lift my head off my chest, my spine had taken a 90 degree turn and it was painful to try to lift it. I have to say that was a way risky procedure, the surgeon told me the OR staff told him they never want to participate in that type of surgery again. The surgery was totally successful in getting my head up (not to normal abililties but almost) and my pain down.

I have had 6 spine surgeries and 1 major complication of nerve damage . That is the nerve that controls respiration (no where near your lumbar spine) So i was left with only 45% lung capacity. I am going to see the one specialist i could find in the country who has done lots of research on this nerve on wed.
i have spent countless time in physical therapy so my therapist has asked me where i want to sit at his children's weddings (they are 2 and 7)!!!
Mostly helps after surgery, never did keep me away from it.
But i do say go for it. Keep us posted here to let us know your thoughts and how you do next month.
judy

[dshobbies]

TOP,

I'm glad you received a confirmation you were looking for but that doctor was more than rude, he was unprofessional. You pay for his time and he couldn't be bothered.

A knee surgeon once showed how disappointed he was that I wasn't a surgical candidate. He said, 'no fun for me. I don't get to cut'.

One would think a doctor actually wants his patient to understand their own condition for which a second opinion is ideal. But once he realized he wasn't going to get to cut, you were dismissed- done. Where did these egos come from?

Dale

[jsewell]

That was so bad and very unprofessional for your knee doctor to say. Well they are only people and there are some very ignorant people out there too.

I was mildly sedated at my discogram, but let me tell you when my most painful disc was hit, i was moaning and crying it hurt so bad. I told him it was rated a 30 out of the pain scale of 1-10! The only problem is after that being so horrible some of the next ones were probably really bad , but in comparison, i gave them like a 6 or 5, not enough for DrRegan to try to remove them. So he only went for the 2 that i was crying at!!! But the sedation sure did not stop me from knowing what was going on.
When i left the facility a little while later, i was fine .
judy

[TiredofPain]

I agree with you Judy about the ignorant people out there. Dale's knee doc needs to be taken out to pasture. Although, I did have knee surgery last year, my doc was great.

During my discogram, they put me to sleep to insert the needles then woke me when pressurizing/putting the dye in. First one no pain, the next 2. HOLY COW! The doc then asked me to look to my right and he explained the xray to me, starting with the first disc and moving to the others that looked different, obviously. lol The doc that told me that "I had nothing to say about the discogram, was one of the very well educated and probably talented, very ignorant people that roam the earth by day and night.

Now on to my 3rd opionion. Didn't work out quite the way I expected but better. This is a family practice that I had been to off and on for the last 12 years. My original doc had moved on. My thought process was that I had 2 confirmations from reputable specialist. Now I wanted a regular doc to look and see what the thought was. I arrived early because I wanted to get it done and over with because I fasted the night before, because I turned this into a full physical, "TBI said that would be helpful for pre-op". The receptionist was awesome, could tell that I was not normal. She said, did you fast? Yes, Maam. Do you like coffee? Yes, Maam. Then she said excuse me, walked into the back and returned with a delicious cup of black coffee. She said, you look like you could use this. Best cup of coffee I've had in a long time. At any rate. I get called back to the exam room, the nurse does the normal BP and temp, and questions. A short time later the Dr. came in. Exchange of pleasantries, blah, blah, blah. Then started talking about why I was there. I handed her my MRI and CT-Scan results. This is not a young Dr. She told me "I will look at these, and explain to you what I see in the results. I'm guessing that you have been told something that you want to confirm. I have to let you know that I'm not a specialist. Recommendations other than potential physical therapy or chiropractic therapy should be discussed with a specialist in the area that is causing you pain"

I thought I was going to pass out. HOLY COW! No ego, and when she spoke to me she looked me in the eyes and it was evident that not only did she love what she did, but she really did care. She spent almost 1 1/2 hours with me. Very very thorough and had a calming effect. I now have a new primary care provider.

So, now my for my 3rd opinion, I'm going to go the the office that the Dr did my knee surgery. They also have a back specialist. My new Dr. recommended that talk to the knee Dr. prior to surgery. I have bone infarct in both knees. Basically my knees had heart attacks and died, and could potenially collapse. Another constant pain area, but not like the back. Thought my new Dr. had a great idea to have 2 different specialist discuss my situation and make sure that maybe knee replacement might need to be done first. Wouldn't be very nice to have back surgery and then one of my knee's collapse causing major probs or potentially failed back surgery. I'm sure glad that there are lots of people out there that are much smarter than me. LOL. Will keep you posted, and thanks for the replies. Hope all is well.
J

[jsewell]

I am so happy that you found one of the good doctors. I have that in my spine surgeon, also my hip and knee surgeon. and my endocrinologists and my GI doc. Ok enough about my list of issues.
I had a hip replacement and although it was no fun, the pain is far less than from our back issues and surgery that is for sure. So i agree with you there. I have also had knee surgery , but not a replacement and both my knees hurt which makes it difficult to bend with your knees and not your back!!!
That was a great doc you had for the discography , i would have loved to look at the screen. Maybe mine did not suggest it do to my moaning and crying!!!

Let us know about this next meeting with the knee and spine doctor i wish you the same luck you had with this new primary care.
judy

[TiredofPain]

Well, I have my confirmed surgery date, 26 April. My other second/3rd opinnions all say the same. I have been trying to prep physically as much as possible. Working on not smoking. 3 packs a day and now I'm 1/4 pack or less a day. Trying to get my legs and upper body ready for the change, at least as much as possible. My sick mind tells me to do things that don't make sense. Endure pain now and strengthen unused muscles in order for hopefully an easier recovery.

I have been trying to be very positive going into this, and today I finally got hit with a few tons of brick. Afraid this may take me back to the drawing board.

Some years back I was diagnosed with early stages of osteoporosis. Last year severe bone infarct in both knees. Today my latest blood test shows a vitamin D deficiency significant enough for the Dr to prescribe vitamin D at levels that can't be purchased over the counter. Actually, the nurse said the Dr is very concerned.

The doctor performing the surgery did mention the possibility of an external bone similator. I believe that I shared my bone problems with the Dr, but maybe I didn't because I didn't think of any kind of relation. CRAP! 2 Level fusion. Hmmmmm. I'm 98 percent sure that they have 100 percent of my medical history.

I'm sure that all will be fine. I'm pretty nervous about the surgery, but very concerned about the bone probs I have. Is it possible for me to get a fusion? My first thought is yes, however there is reality.

I'm pretty disconnected from most of my family. Both parents deceased 20 years ago. Don't care much for my sisters. Easy family history on my fathers side. Working on my mothers side now, and hopefully be able to provide that to the Dr on Friday.

Sorry if I'm rambling. Guess I needed to vent.