Moving on....

Now that I feel I've got a plan for the hip, as I started massage therapy yesterday, it's time to move on! I'm hoping the massage gets the muscles working again and lessens the pain. That way, I can use acupuncture for something more beneficial...at least to my future plans ;)

Instead of having a normal session today, I had my fertility acupuncture intake meeting. T. asked all kinds of questions about everything under the sun - I trust he knows the information that he needs to come up with the best plan for me that's possible.

My lifelong dream is to be a mommy and I'm hoping and praying that getting healthier and adding acupuncture in the months before I begin my journey will be the ticket. Though, now that I think about it, with tonight's appointment, my second journey begins now. I ordered a Rx that T. submitted when I got home. Precious Sea is the herb. The goal is to regulate my cycles, which are 40+ days.

Here's to the beginning of Journey 2...may it be the complete opposite of Journey 1.

the latest in the back saga...

Well, there has been relief of back pain...however, it has been replaced. Just my luck! The left hip has had pain since last June but seemed to get more and more nagging as months went by. Xrays showed nothing...MRI showed a bit of bursitis on both sides but nothing really that would explain the constant pain, let alone the magnitude of the pain.

Over the last several months, I've tried water PT which did not help, though, made the pain worse. I did 12 sessions of open pool following the end of PT - the warm water did help, but with open pool, I could just hang in the water, taking the pressure off the hip and the pain would ease...I was on my own so I didn't have to do scripted exercises. Once that ended, Dr. D suggested acupuncture as the next step since nothing was working. That started in February - 2x a week for many weeks. It's provided a great deal of relief. It hasn't fixed the problem completely but it's helped..bonus! I'm still, to this day, going weekly. I'm not sure it will "FIX" the problem, but at this point, I'll take the relief.

I've begun walking a couple miles a day, trying to lose weight and strengthen my leg and hip muscles. I'm willing to try anything to help at this point.

My back remains better, thankfully! It has it's moments when I've done too much but for the most part, I feel that the series of 3 surgeries and countless injections (mainly the final one) has done the trick.

Here's to strengthening the hip and acupuncture continuing to help minimize the pain!

...it's about time to start focusing on something else :)

#BELIEVE

*I never thought this day would come.

*After two and a half years of constant pain, I thought it was my destiny to just have to live with it and thru it.

*I had all but given up hope!

...then Dr. M came into my life and gave me that caudal injection and life has completely turned around.

Since that injection, I have weaned myself completely off any pain medication. Such a great feeling not to have to sleep all day (granted I slept a lot better then than now, but I'd rather not sleep and not be taking the meds). Tomorrow will be two weeks post-injection and I feel like a completely new person! I can walk, I can sit, I can stand, I can lay....I still have some pain if I'm driving and still have the numbness/pins&needles in my right thigh but I've learned to work around the latter of the two. Starting nerve meds should help, too. Passage of time should be the best cure for the thigh, as the nerves regenerate (hopefully).

I'm really focusing on getting out and walking to build up my strength and endurance. Yesterday, I walked over 4400 steps during the two walks, in which I added two and four blocks to my walks. Today, I walked 8,730 steps in my two walks!!! I was ecstatic when I saw that (loving the pedometer I got thru work). I walked around the path in the next complex and didn't want to stop. 60+ degrees, gorgeous leaves falling from the trees covering the path, and just the ability to move freely and pain free...I didn't want to stop!!

Everyday seems to be getting less painful, which I've noticed has DRASTICALLY changed my mood! I'm more positive that there will be an end to the pain. I'm excited to get outside and walk. I'm excited to see how far I can go. And I will keep pressing on until this whole nightmare is over!

*Positive thinking is powerful!

*Just gotta BELIEVE!!! and these days, I truly BELIEVE I'm going to see the other side of this ordeal!

Will this EVER END???

Well, here's the latest...

Seending Dr K on 9/6 did not bring the news I was hoping for or really ever was prepared for..another surgery! Number 3, seriously?!?! He wanted to do an exploratory surgery in the L5-S1 area and clean it out more - as there were bone spurs and such at that level due to severe degenerative disc disease. So, i agreed. If it was going to help, why not? What's another one? I know what to expect. So he went and got the nurse and came back w/ a surgery date of 9/16...what...only ten days to prepare?? Yep, that's what I had. guess it's better to get it over with than have to wait a month...plus I'd love nothing more than get everything fixed this year so I can stop putting the max in my health care spending account every year and use that money for something else...like Colts tickets :)

So I spent the next 9 days preparing work things and such. Nothing much else needed done as I had just had surgery 4 months prior. The house was still where it needed to be. I did pre op testing the day of my appt so i didn't have to come back up since surgery was so close to then...which was nice.

Surgery was to be outpatient or possibly overnight. Surgery went off without a hitch. He cleaned out bone spurs and there was a piece of disc just hanging out where it wasn't supposed to be so he removed that as well. Hopefully, that would fix the pain. The resident was trying to rush me out not even an hour after I got to my room but the nurses said I didn't have to go if I didn't feel comfortable with it...and who wants to ride in a car for 2.5 hours a few hours after surgery? Not me! So I decided it was best to stay. I couldn't extend my left leg very far when I walked (thankfully, I didn't have a spinal fluid leak as I did surgery 2 I found out and could get outta bed when I needed, praise all things holy!!).

It was hard to find meds that would help with the pain in the hospital. They tried about everything. And since I wouldn't eat (I refuse the day of surgery cuz it upsets my stomach and who wants to get sick when your back was just sliced open???), they wanted me to have whatever I could via IV since I had an empty stomach.

The resident said the pain in my left leg was from my positioning in surgery and would go away in a few days...the nerves were just inflammed - which is also typical after surgery. Now after three surgeries, I wonder why they don't administer steroids post op to stay on top of the inflammation but what do I know...

After very little sleep, I got to go home the following afternoon. Still quite a bit of pain in my left leg but otherwise it wasn't too bad. It didn't feel as thought my back muscles had been cut during this surgery so moving was less painful as in the past. Car ride home was uneventful and then began the healing.

I was to take the following week off and then begin working from home but that didn't happen as I was not able to sit in the chair or couch. All I could do was lay down. So I had the return to work moved another two weeks out. I tried those two weeks to sit more often but that didn't work out too well. I ended up working a week then going back on leave. I just couldn't sit for any length of time.

Beginning the third week, I was having numbness in my right thigh and significant pain behind my left knee. The nurse had me try a week of Advil then call back if not better. Called because it wasn't better and he started me on a steroid pack for a week - call a week later if not better. So I called again when it helped for two days but was already back before the meds were done. So the next suggestion was wait another week and see how it goes and then probably injections... lovely. Another week passed - no relief so an injection was scheduled for 10/20 at the Cleveland Clinic's Pain Management group (my dr here couldn't get me in in a reasonable timeframe). I'm used to how the dr's here do the injections, as I've been thru 11, and usually I'm in and out in less than 40 minutes. Not this time. From the time I walked in until I was back to the car was 2.5 hours! It felt like surgery w/ the beds and gowns and the look of the areas these were done in...it was crazy...IV and everything. I decided i didn't want any sedation - I've been through enough to know what to expect and I could handle it. One doctor got my thorough history and physically examined me. I hadn't had meds in over 24 hrs so I was in tears already so that didn't help. He decided that they needed to try a caudal injection, which is placed in the epidural space of the tailbone rather than the space around the above levels that I've had in all other injections.

After he was done, the regular doctor came in, Dr M, and they went over my history and he asked questions and such. He told me he could see the tension and frustration just by looking at me and agreed that something needed to be done to help. 3 surgeries and about to be 12 injections was enough.. He suggested PT but I had told him Dr K said he didn't want me doing PT after these types of surgeries. He mentioned their inpatient rehab program that included PT, psycho therapy, and all other types of therapy that might help down the road if this doesn't. at this point, I'm ready to try anything. I can't live like this forever.

After all questions and exams were done, I was taking to the room and everything else was "normal" except the shot was done lower than I had had in the past. I went to a recovery room after that for about 20 min while being monitored and such. I was in tears within probably ten minutes because my legs hurt from the injectin so bad! I thought...here we go again. Gonna be in the same misery as the other 11. It's just gonna get worse all night and I'm not gonna be able to get comfortable or sleep. Finally, the nurse came back and saw I was crying. Told her my issue and I had meds in the car and she let me get outta there! Thank goodness! The misery started to ease up about halfway home and I rested in bed the rst of the night. I felt surprisingly better than I had ever before and began to find some hope.

the next morning, I felt better than I had in days past but my right leg was more numb than it was before the injection but the back pain was better (didn't realize I had so much until i stopped taking meds for 24 hours and I realized how much pain I was still in). the positive though is the need for less meds and that has continued thru today. Having more pain on the left hip today and just frustrated!

I just don't know how much more I can take. I'm trying to work on sitting for 20 minutes at a time and it's almost more than i can handle.

I'm beyond frustrated. I'm depressed. I'm sick of sitting in the house and not being able to go and do things that everyone else can do. There are still tears often - some for pain, mostly the frustration! and to think I have three weeks before I have to go back to work and sit there 8 hours daily is scary. I have a lot of progress to make before that's going to be able to happen.

SICK.OF.IT!!!!!!!!!!!!!!

Back to Dr K for post op appt on 11/10...we'll see what he has to say. Praying I feel a lot better then than I do now.

and the saga continues...

After being so hopeful after surgery and before my post op appt, here I am just over 4 mo post op(as well as just over 19mo post op from the first one), and still just as miserable as ever. Yes, the second surgery helped some and for awhile, took away all my pain. I got to experience what it felt like before the pain started and I was so hopeful that the end had finally come! I couldn't have been more wrong!

Dr K didn't have many restrictions for me at my post op...he said he is hesitant to tell people what they cannot do, but rather to listen to what the body says. He did suggest no running/jumping for 3-5 months when I asked about softball :D Because i was still having pain in my butt/legs, I was just told to listen to what it was telling me. So I watched all summer!

No PT was written for after this surgery...I still wonder if that was the best as my muscles in my back do not move like they used to at all. But I trust in Dr K that he is sending me down the right path.

tho, the pain continues and has gotten worse! Finally, I talked to Cleveland again and Dr K recommended injections - even tho I have had 9 prior and they always made things worse. But I agreed, thinking it being post op, it might be different. So I scheduled them w/ Dr P here because he had done them before and it beats driving 2.5 hours for injections, 3x. Aug 2 was the first round....he had decided at the consult to do 2 each round, for 3 rounds but stop after one if no relief happened. So I toughed out round 1 and had forgotten the misery of the night of...wow! Didn't sleep much due to pain and spasms. He hit the exact spot on the left side and had said if that didn't help it, no future injections would. Only survived three hours of workthe following day due to pain. First time I'd missed work for pain. After a week of misery, I finally started feeling some relief...even if I was hesitant to admit it. It lasted for two weeks. and in the midst of those two weeks, I was scheduled for an EMG (nerve and muscle test) and an MRI because when the nurse called the day after my injections to check on me and I was in tears, Dr P decided that it was best to move forward w/ the tests because the injections should have done more. EMG showed no nerve damage - which was great, even tho the test was NOT pleasant. MRI showed some improvements along w/ new things going on: fluid pocket in 2nd surgery site, degenerative disc disease in a more severe state, fluid in marrow, no fluid in disc, etc. So after receiving the report and MRI on disc, I forwarded it to Cleveland and waited for a call.

My first follow up w/ Dr P is 8/30, which was when the 2nd round of injections was to be but those won't be happening - i'm DONE w/ them! Not worth the pain! Instead, we will be going over the MRI and where to go from here. Cleveland called Monday and said Dr K wanted to do a thorough exam on me to try to pinpoint the exact cause of the pain before he could offer a treatment option or surgery. I'm not sure why this "pinpoint the pain source" has never truly been done before, but what do I know! That appt is 9/6.

So, the pain that decreased for two weeks is back. I'm miserable all the time and the hope for this pain to ever go away diminishes by the day.

Next up: Dr P on Tuesday, Dr K in Cleveland on 9/6....then with two opinions, we'll see what will best help get this pain manageable!!!!!

Fingers crossed...enough is enough!

28 months and counting............

Surgery pics...

There's just no comparison to Surgery 1...This incision healed so QUICKLY! Amazing how leaving it open and adding glue will allow for healing :)

Surgery 1: January 15, 2010



Surgery 2: April 22, 2011



Hopefully, there will be NO more surgeries to compare!!!!

How quickly time flies...

Wow, so much has happened since the last post. Let's see if I can give a play by play to cover it all....

January 26 came and went w/ another denial from the insurance company. It was hard to handle and I had a shot to appeal but nothing I could do would change their minds.

I was still waiting for my appt w/ Cleveland Clinic that I had made in November for March 17...which was later changed to March 20. So I waited, continued to track pain, take meds, and just do my best at living day to day.

March 20 arrived and Trina and I headed to Cleveland. Long drive in pain but it proved to be worth it. The campus of CC is massive...but we didn't get lost. Everyone was amazing and nice...did not encounter one negative thing. Fast forward to meeting my new surgeon, Dr. K. He was GREAT! Mind you, he had no other info than my dr's here did...he looked at it all and then came in to talk to me. He stated very clearly the insurance company was right to deny the fusion...it was NOT something that I needed.....after months of agonizing over that denial, that was music to my ears! There WAS a reason for it and now I knew why. His opinion was that Dr. B did not go far enough down when doing my first surgery and there was still narrowing (stenosis) at the bottom level: L5/S1. If that were to be cleaned out, there would be an 85% chance that it would fix all my symptoms!!! 85% are realllly good odds in my book! His recommendation: laminectomy at L5/S1, a day or two in the hospital, and a lot of walking. Told me to think about it and if I wanted to schedule it, call them back. So we started to walk out...passed the registration desk and I stopped. What was there to think about? I'm in absolutely misery and this is a less complicated surgery than what I already went thru...and it would give me an 85% shot at getting my life back. My decision was made...I wanted to get it done. So I turned around, asked the receptionist, "what if I don't need to think about surgery and just want to do it?". She said she would get me back to the nurse and surgeon again to get it scheduled. Fifteen minutes later, we were walking out again...but this time, consent signed and surgery set for April 20! I was ecstatic!

The next month was full of planning, cooking, scheduling, prepping the house for yet another recovery, visiting family and friends....

April 18th - parents were already on their way to OH and the phone rings...Cleveland. Postponing surgery....no denial, just rearranging the surgeon's schedule. I was almost in a huge panic... but I tried to remain calm. Only a 2 day shift.

April 21st - headed to CC for a day of pre-op appts then to the hotel to relax and prepare for a great big HAPPY day on the 22nd.

April 22nd - THE DAY I HAVE WAITED 15 MONTHS FOR!!!! Parents were there w/ me, Trina was on her way... T and Brando were on their way. Surrounded by the ones I love, I was ready to feel better! After waiting for what seemed like forever for the OR to be ready and to find out I wasn't getting bumped by an emergency surgery, it was my turn! Off to the OR I went ;) Great staff...then I was OUT! ;) Waking up was easier than the first...no mean ladies putting stockings on me. Didn't really approve of having to switch beds when I arrived in my room but I survived. Pain was allllll muscle pain...wowzers! My incision didn't hurt, just my muscles. Pain meds didn't touch the pain...so I stopped asking for it. I wasn't allowed to sit up or lift my head for 24 hours...still wondering if there was some leakage of spinal fluid during surgery (usually if that's the case, sitting up induces horrible headaches)... that was the hardest part. Having to pee and not being able to get up. Experienced my first two catheterizations...just temporary both times but still...traumatic but necessary.

April 23rd - jerkface resident came in to do strength tests and such...grrrr! Did NOT like him. I'll cut his back open then the next day poke and prod at it and throw his legs down. NOT a good first impression. He stated I would be able to sit up/get up today so I was happy. ...but of course he didn't write it in my chart so I just waited and waited.... finally at noon I was able to sit up 10 degrees at a time and then wait 20 min. If no signs of headache or anything, 10 more degrees..etc. It took a couple of hours before I could get up. That first trip to the door and bathroom and back took a lot outta me. The next walk I went to the hall a bit, but found out later that that was too much. No more walking for the day. I was done! Oh, and praise all things holy for the NICE resident who thought to ask me about my pain and offer me muscle relaxers because pain meds don't help muscles! She's the best! I finally was able to start getting some relief from the horrible muscle pain!

April 24th - still in the hospital. Hadn't quite expected to be in for two nights since it was a less invasive procedure than the first and I was out in a day. But I trusted everything CC did so I followed and didn't push it. There would have been no way I could have gone home that first day anyway. No way! Ate my breakfast and lunch, did a big walk around the floor, and got ready to head home! I wholeheartedly dreaded the 2.5 hour ride home after back surgery but thankfully, it was a lot better than I ever anticipated. Lots of pillows and blankets strategically placed did wonders. Made it home with no issues! Got my meds picked up, and headed to the house! I had survived!!!

Recovery - amazingly different from the first one! A week post op I was already feeling better than I had felt the 15 months since the first surgery! Week two was great! Week three even better. The fourth week was full of rain and pain... I wasn't able to get out and walk as much and the weather might have played a part in it.

Today: 4 weeks and one day post op: I feel that I've been given my life back!! I do not take for granted the minutes and hours and days without pain, or with very minimal pain! I cannot believe that it took over two years and two back surgeries in two different cities by two different surgeons to get where I am today! However, there's a reason for how it all happened and I'm grateful for it all. I'm much stronger today than I was before...and thankful each day for just being able to live my life again!

Future: Still recovering and healing. Post op appt scheduled for June 14th. I want to hear my restrictions moving forward and just thank Dr. K again, in person!

On to living!!!!!!!!!!!!

will know something by.....

....january 26th is the date!

Insurance will render its decision on my appeal and notify my by that date!

I think when the envelope comes, I'm going to be afraid to open it!

Follow up...Let down...

Went to see Dr. R for my followup after the latest round of injections. Well, not much to report, let alone anything good. His assistant came in and got all the latest info and did the typical tests (reflexes, push/pull, bend forward/backward) and talked about the spreadsheet I created of pain/symptoms since Nov 10. Clearly everything is getting worse and the injections didn't do anything...which my first round didn't either last year so I didnt have the most hope!

By the time she was done, I already knew I wasn't liking how things were going. Basically, the plan for the next month is manage pain w/ narcotics....as being in pain constantly isnt' good for the body...and come back in a month. UGH!

Dr. R came in and, as always, said there are many people fighting for me, and all the others in my situation. Also suggested I needed to send letters to the senator and govenor and all those kinda people...get the word out about how insurance companies are denying these surgeries that need done. Also confirmed to take the medicine and come back in a month.

What will happen on Feb 2nd when I go back? I have no idea! I don't know if there are any other options. . .if there are, they have never been mentioned. Maybe after that, he will be done w/ me as well. I just dont know. No matter what happens, I was left with nothing today. An option that I despise, as I've been taking them since September 2009!!!! I HATE taking them. Which, now that I've started school, it makes it hard to study and learn new material while experiencing the affects of a narcotic. So, I will continue on as I have been for months and months....because really, what other choice do I have?

Quick Update

Injection #3 is complete. Still no relief but I really didn't expect any. It did hurt quite a bit after it was over - each has progressively gotten worse.

I asked if I needed to continue w/ the 2bananas/1gram of calcium a day because it hasn't helped in the first 11 days...and he said yes, I needed to finish the final 4 days. However, I did find out what he was ruling out......he was ruling out the leg fatigue/weakness being from the injections. Which because there has been no relief, that was indeed ruled out. What does this mean? It means the cause of the leg issue is from the original reason I needed surgery to begin with...not good news. Confirmation that surgery is needed....frustrating because I can't have it.

Made a claim to the Office of the Inspector General against the insurance company. Not sure that it will do anything but I did it at the request of my dr. Guess now I'm supposed to write the insurance company. Again, not sure it's going to do anything but at least it's something.

Jan 3 is the next appt to follow up on the injections and see where to go from here.

...and again, the waiting begins.

another path..

After going on three weeks of my legs being constantly weak/fatigued feeling, as if I had completed 6 marathons a day....I called the dr. Dr. R (who is doing my injections) made two suggestions that I'm to try.

1 gram of Calcium a day x 15 days (aka FIVE HORSE PILLS)
2 large bananas a day x 15 days

Not sure what he thinks it is but I'm following the suggestions.

Final injection Dec 20 then the follow up Jan 3.

We'll see what happens in the next 15 days!

Fingers crossed!

Injection #2

the injection itself didn't hurt but as soon as I was in the chair resting, as I am required to do after each one, it started to hurt... thankfully, the xanax knocked me out shortly after I got home which I think is a savior nowadays.

today was the day after the injection....by far the worst day of pain i have had in a long time. not welcomed. very frustrating! from shooting pains down my legs to pain with every step i took to aching in my legs to tingling in the majority of my body........tears of pain and frustration.....

i just want it all to stop!

Back to square...let's say 2.

Well, after feeling like there was absolutely no hope and no where to turn, there seems to be a plan. At least something in the meantime.

Dr. B suggest I return to Dr. R (spine physiatrist and pain consultant) and see what he felt my options were moving forward to at least help with the pain. After the typical month-long wait, I met w/ him Nov. 18. I met at length with his assistant first in order to go over all the stuff that's gone on since I had seen them last in August... and her jaw dropped when I told her that my insurance denied surgery. Shocked! After her part was done, Dr. R came in. He was reading the notes that J and I had just done and I mentioned to him the insurance denial and he stopped mid sentence, WHAT?!?! He said, and I quote, "I will get them. I take this very serious." He said he would treat me in the meantime, while working to get the surgery approved. He was going to research the issue and get them. I went back to work and faxed him over all the insurance denial information and the insurance guidelines for a fusion surgery.

Plan: another round of epidural spinal steroid injections
When: Nov 22, Dec 6, Dec 20

When I went to the first injection, he said that he had done some research and found that Anthem was pushing back hard on back surgeries because they feel they are done entirely too much nowadays and that there were already National Boards involved...so his research was quick and the boards, I believe, are taking over from there. He said, "Enjoy your Thanksgiving and don't worry about the insurance at all." So, that's what I've done :)

The injections can take 3-10 days to work. . .and from what I can tell thru today, so far I haven't felt any changes. Maybe after the next one, I'll feel more relief. Until then, I just keep managing it the best I can and seeing where things go!

Oh, the appeal that I was going to write will not be finished. I started writing the letter (because the website STILL will not allow it to be done online) didn't get very far because I needed specifics...so I requested my medical records from Neurological Assoc. Once I got those, I still didn't have anything I could use to meet the insurance's guidelines so I don't feel there is any point.....and it was the same day I met w/ Dr. R and since he is fighting for me, I am ok in letting him do the appeal work, rather than my meaningless attempt.

Fingers crossed something gets done to get me whatever needs done to help this pain!

Remaining broken...

Finding out surgery was denied when there were 2 days left of the countdown was hard to take...but there was an ounce of hope. A peer-to-peer review was requested from the insurnace co with my surgeon, who normally doesn't participate in them. When the countdown hit 1...the peer review was done. . .and yet, they still denied it. Surgery was cancelled. All post op appts cancelled.

Simply put, I'm completely devastated. I've cried for three days. I'm angry. I'm numb. I'm lost. Totally at a loss on the moving forward.

Right now, I should be in the hospital, recovering from an extensive surgery. Nine months ago today, I was in the hospital recovering from my first lumbar surgery. But instead, I'm sitting in my own bed, eyes drained of all my tears, completely lost. I don't even know how to describe what I feel right now.

I've spent the last two days trying to file an appeal online, which I'm told, is my right. However, their site doesn't load that page. I've talked to customer service and technical support - been told I can file an appeal online and that i can't.... I've lost all patience w/ this insurance company, their employees, and the website. So I search online to learn how to write an appeal, since I was counting on the website to give me guidance, as I've never had an issue w/ my ins. co. before. Talk about overwhelming...didn't leave me with any hope, and I didn't have much to begin with anyway. But I did learn that I needed the denial letter to write the appeal so I could include specifics. So I waited....well, just so happens it came today. DATED LAST FRIDAY!!!!!!!! Just pour more salt in my already deep wound. Knowing what I learned online, and reading the letter...there's little hope, or if I'm being completely honest, none at all that anything i write is going to change the mind of my insurance co who denied it before and AFTER speaking to my surgeon.

My head spins. . . .to think that I've spent the last 5 months waiting for this very day. Today, October 15th, I was to have my best shot at relief from the daily pain I've been living with for the last 18 months. I went to my doctor appts, MRI, waited for results, was subjected to the MOST EXCRUCIATING PAIN EVER with the discogram and waited weeks for results and then longer to find out the plan...then waited another month for today to come.... for what?????????? Absolutely NOTHING! Instead, not only do I have more pain than I did in May...but I have no forseeable options for relief. The surgeon has her hands tied and cannot provide me the option she feels is best for my recovery. She's done w/ my treatment completely. I now wait for Dr. R to get my message next week to see if there is anything that he can do to attempt to alleviate the pain. (Dr. R is the pain physiatrist who did the discogram who specializes in non-surgical pain treatments) Dr. B recommended I call him to see what he might come up with but wasn't sure he would be much help, as he is the one that sent me back to her after the positive discogram, recommending the fusion surgery. At this point, Dr. R seems to be the only hope that I have for relief. The thought of temporary treatments for pain is not ideal to me, when the underlying problem cannot be fixed.

Maybe something will happen and I won't suffer from this forever. Maybe there is a good reason for this denial and cancellation of the relief I was hoping for. But right now, I don't see anything positive. Living everyday with chronic pain that limits me from doing things I enjoy is unacceptable....and it more than angers me to think that the insurance company can overrule the recommendations of two neurosurgeons and a pain physiatrist. Living on pain pills and muscle relaxers to function is not the quality of life I deserve...but thanks to Anthem, that's what I'm left with now.

Back to square 1. . . .completely lost!

the Final Countdown...

Well, just 5 more days until surgery!! Pre-op appt is done and cleared for surgery. Brace fitting is done and the two-colored blue brace is just waiting (and I didn't pick the color, despite what everyone thinks LOL, it just worked out perfectly). Meet n greet w/ Dr. D (surgeon and hardware expert who will be assisting Dr. B this time around) is done. I am more at ease with the upcoming surgery, now that I know the details of what's to come.

Here's what Dr. D shared w/ me. . . .
Dr. B will be removing 3 bones in my spine that will allow for decompression and relieve the pain in my legs (which was tremendous news as that gets to be the worst by the end of the day). The side bones that stick out (don't know their names) will be shaved a bit in order to signal to my body to generate new bones. Dr. D will put rods in that will line my spine, attached to the bones with 8 BLUE titanium screws in order to stabalize the 3 level area, so that it no longer has the ability to move. Because there will be tremendous pressure in the area(just by normal living), they have to fuse the area w/ bone in order to prevent the rods/screws from breaking over time. This is done by grinding up the 3 bones that were removed and adding it to the good parts (minerals, etc) of cadaver bones until a 'putty' is formed. This will be placed in between the bones and allow for the fusion to take place.

The surgery has 3 purposes...decompression, fixation, and fusion in 3 levels (L3/L4, L4/L5, and L5/S1). Because of the invasiveness of this surgery, I will be in the hospital for 2-3 days to manage the pain and such. I will be walking before leaving the hospital. My brace is for times where I'm up and moving about. I don't have to wear it when I'm sleeping or even necessarily when I'm sitting and watching tv, per se. I need to wear it a bit more this week to get used to it...don't need to be healing from this surgery and getting used to the brace at the same time. I'm a pro at getting it on and off so that helps. I could be wearing it for 8wks, 12 wks...it all really depends on how quickly I heal. After I do heal, then i will start PT again, to recondition my body for movement. It's not used for pain management post-op this time, as it was after my first surgery. So I won't be starting that for a couple months.

I have been ok'd (by the nurse LOL) to work from home beginning 11/1 so I don't have to go too long on disability income. However, I won't be returning to the office for approximately 6 months it sounds like. I'm not gonna know anyone when I get back! That's such a long time but they want to be sure that I'm healed and ready to return to sitting for long periods of time.

After this week of appointments, I feel I'm ready for surgery (as well as I can be). Just ready for the relief that I'm praying this brings to me!

let the countdown begin.... 5....4....3....2....1......

because I've neglected this....updates

Wow, it's been a while since I have posted...and even longer since I updated about the neverending pain of the broken back.

After meeting with Dr. R...the discogram was scheduled and then moved up a week, to July 23rd. Never in a million years could I have ever EVER prepared myself for what I was about to endure. After getting up at 3:45am to make the hour drive to Marion, OH for the test, I'm as ready as I think I can be. The staff was great and I was first on the list for the day. Just get it over with. . . .WOW! The 4 needles were placed in each of the 4 discs being tested and it began...well, I didn't even know he really started because I didn't feel anything with the first disc...aka, no issues there. Then, hell was just seconds away! I had no sedatives as I needed to be able to feel the pain to let the dr know . . . the 2nd disc was done (L3/L4) and I remember saying "8, 9, 10, 12" as the pain just kept increasing. It was like an extremely painful spinal steroid injection that kept getting worse until it was almost like I was being crushed from the lower back and down. The next one (L4/L5)- I'd rather die than ever experience that again. I immediately screamed, burst into tears and jerked as if I was trying to jump off the table...just a reflex from being in that much pain - who wouldn't try to get away from it?? He says "I think we know where the problem is." They quickly tried to calm me as best as one can consoling someone who feels as if they are being crushed by a semi...and he continues to do the last one (L5/S1) and I cry harder and scream again. ...and it's over. Demerol is quickly injected into my IV and I start to feel a bit of relief...as I'm forced to switch to another bed to take me to "recovery" where they remove the IV and I get dressed....all done w/in 15minutes as I need a CT scan before the dye has too much time to disappear. I was able to walk out of the surgery center and head down to the Imaging center (of course Trina was driving) and had the CT scan done right away. Painless of course...then the hour drive back home! We stopped for breakfast and I spent the rest of the day in bed! Too many possible side effects from the procedure - all of which I wanted to avoid! I was fairly successful in that but I recovered nicely, in comparison to what I was just put through! WOW, recreating the pain? That's as misleading as it gets! I've never felt pain like that, nor do I ever want to again!

The next step was back to Dr. R's office for the results, August 17th. I'll never forget it...he opened my file and started reading the report out loud and just as soon as he did, he stopped and just read silently, shaking his head! Never a good sign! Clearly, I knew the results due to the reaction of the test. Positive at the bottom 3 levels tested. His recommendation: "extensive three level fusion surgery". NOT what I wanted to hear...but, exactly what I expected! If the point of the test was to determine where the pain was coming from to know where to fuse...I just expected it and tried to prepare myself for hearing it. He shook my hand, wished me luck, and sent me on my way! Back to the surgeon again. . . . .

Back to Dr. B...she was not happy with the results, but went over my results a bit and talked about the options. Ha, if you really want to call them that. Option 1: do the 3 level fusion which is never ideal because they don't like to do more than one or two fusions because of all the added pressure put on those discs above and below..but in my case, three need fused and though it's not complicated to do it, it's just not a great situation. Option 2: pain management (which isn't working now and hasn't been through it all). Trina and I asked all the questions we could think of being in the moment...as when in the office, all the information makes my brain spin outta control and I can't think too clearly - especially in this instance. Some of the answers: 3-6 month recovery easily. 2-3 day hospital stay minimum, longer if complications/infection. mobility wouldn't be much different than what it is now, just because I can't do much bending with the pain. cannot do just two fusions because there is pain in all three and it wouldn't be a good idea. the three discs will be removed completely, filled with bone graft, hardware put in place. back brace. two neurosurgeons would be doing the surgery, Dr. B and her partner Dr. D, who is the hardware expert. 30% chance of future surgeries due to the added pressure on the surrounding discs. no guarantee this will rid me of all of the pain. (there might have been more but that's what I recall now..). Then it was time to hang out while they called the insurance company and then we sat down w/ the scheduler and worked out all the details.
Surgery: Oct 15. Next appt: Oct 5 for the brace fitting and meeting with Dr. D about the hardware. Post op appt: Nov 15. Xrays need to be done prior to ensure the grafts/hardware is in place.

I left the appt w/ my head spinning. I never dreamed that it would all be so difficult to process. I had a busy evening so I didn't have time to really think about it. However, the next day, it hit me hard! I spent many tearful days trying to figure out if I was doing the right thing. I'm not sure if I really even have that answer still but I'm moving forward with the decision. As days pass, I spend more time planning and preparing for the surgery and recovery, getting help lined up and the house post-op-friendly since I won't be able to reach/bend for some time. Maybe the planning will help prepare me for the actual surgery, or at least help keep my mind busy.

So with 34 days left until surgery, I will keep preparing for it physically and mentally. I know it will be here before I know it!!!

Til then, there are Colts games to attend (season tickets ROCK), softball games to watch (no more playing for me...a BIG hurdle to mentally overcome), family to see, and friends to hang out with.

Live each day to the fullest! It's times like this that it really hits home!

Derrick - Class of 2010

Where did the time go? I remember vividly the day that Derrick was born. I've watched my first nephew grow up from a adorable little baby to a handsome young man. Wow, what a great individual he has become in the last 18 years!! I'm so proud of all that he has done so far and look forward to all that is in store for him as he starts the next chapter in his life.

At awards night, he racked up some class awards and scholarship money totalling over $32k! How cool!!!!! I watched him get his honors for his academics, as well as athletics. With each accomplishment, I became even more proud (and I didn't think that was possible). After the program, he even posed for pics ;)



Then....came graduation! WOW, I knew it was going to be emotional but I was quite unprepared for how it was going to affect me. WATERWORKS started the second the band started playing Pomp and Circumstance. Derrick was the second graduate in from the left, walking w/ the class Salutatorian. So many emotions flooded me while I watched him head to his seat...and I just couldn't take my eyes off of him. In his short amount of time on this earth, he has been through and experienced so much...the loss of his mom, being adopted by his other mom, becoming a big brother, moving from grade school to high school, from South Newton to North Newton, and keeping his grades up, just to name a few. Such a remarkable young man to go through it all with the kindest of hearts and a smile that can melt anyone!..two traits he most definitely got from his mom!!! This should all bring a smile to my face...and it does, thru the tears! Words just don't do justice to the feelings and emotions inside...so I'll just end w/ pictures!



I'm, without a doubt, the absolute proudest aunt on this earth! Congratulations Derrick and cheers to the next chapter!!

another Back Update...

Well, I went back to work after 12w2d off post-op. I had been feeling better and didn't want to wait an additional two weeks for my next follow up with Dr. B. so I called and got what I needed faxed to work so that I could return.

Work was work when I returned...some things never change. However, pain started to increase sitting there for hours and hours. I was questioning the return to work - however, I guess it had to be done.

Therapy continued...I went to my follow up appt at the end of April in which it was determined that because there was still pain, another MRI would be done. They are usually repeated 3-4 months post-op if needed, which was the time frame I was in. May 15th, it was finally scheduled, and I got it done. I asked my referring dr to look at the results because I wasn't sure how long it would be before I heard from the surgeon (I had no followups scheduled-to my knowledge). Dr. D. looked at it and said there was still healing, no more stenosis, scar tissue but overall, there was improvement over my pre-op MRI. I thought, GREAT! So, I called Dr. B's nurse to see if I could get my results. She returned my call and said I had an appt May 27, that Dr. B didn't give results over the phone.....however, I knew nothing of that appt. So, I went in on the 27th and was prepared for good news, to hear just keep doing what I was doing and eventually the pain would stop. Boy, was I wrong!!

I saw her assistant again, which was fine because I always seem to have more time w/ her when I see her. While waiting in the room, I hard Dr. M. outside looking over the MRI results and possibly explaining what she was seeing to someone else. I could tell instantly that there wasn't going to be good news coming my way. She talked about how there were issues in multiple levels...just nothing positive. When she came in, she asked about PT and pain and such. About the only word that sticks in my head from the appt was "fusion/s". Fusions aren't something that I would have ever anticipated and it seems pretty scary! She did some more MRI studying and came back in, saying that they were going to send me to see Dr. R...a spine physiatrist and pain consultant, within the same practice in order to have a discogram done - which is a test that injects dye into the discs one at a time in order to attempt to recreate the pain and determine where the pain is exactly coming from. This would determine the levels of the spine causing the issues (if it's from the discs) and help figure out which levels would be fused together, if that's the route that gives me the best outcome! s.c.a.r.y! So, the consult for the test is scheduled for June 14th then the test will be scheduled, completed, then it's back to Dr. B's to determine what will be the next course of action!

All that being said, it took a few days to process everything and come to terms with it all. Because it was the last thing I expected to hear, it took more time to get a grip on it. Now, I'm just looking forward to getting the test done and find out what's really going on!

This week, I finished up 4 months of PT. I'm sad to be done in a way because I had two amazing therapists...but because progress had stopped and I'm being followed by a few dr's right now, it was just decided that I had had enough and we'll go from there!

Whew, I think that about covers it. I'm tired of the pain...it seems to be getting worse as the weeks go on, so just hoping for some answers in the very near future!

More time off?!?!

Well, just as the first surgeon follow up didn't go as I expected, the second follow upon Monday did not as well. I expected to go back to work Tuesday, since that would be 10w4d since I last worked. Well....the office was as crazy as all the other times I had been there - this total office time would be 3 hrs (from the time I arrived 20 min early, until I left) but I just look at it as she is good and worth the wait. I actually chatted w/ another patient in the waiting room...another girl my age who had had her 2nd surgery a month before my surgery...YIKES! Definitely put into perspective of what could be in my future if I don't take care of the ol' back!

So, because of the huge back up in appointments, they had called Dr. M. from the hospital to come over and help with post op appts...which would be me. I was angry while I was still waiting because I didn't want to see anyone else that didn't know my case, I wanted to see Dr. B. However, I'm actually thankful for the switch. Dr. M. sat and talked to me for 20 minutes...more time than I've spent w/ Dr. B. total over 2 appts and surgery morning. She said she assisted in my surgery and that made me feel even more comfortable.

She asked about my pain and how therappy was going, what i did in therapy, tested the strength in my legs (which is great, as I've not lost any over all these months), asked about work.... looked at my MRI report and said I started with "crap". It makes me laugh to hear all of my doctors and surgeons use the same word to describe my back :D But it is true...it was crap. Because my pain still was pretty consistent when I do more than sit around the house, she was a bit concerned. Given my age, I shouldn't be feeling like this still. She asked if I had flexion/extension Xrays done and I said no (xrays taken while bending forward and backward). That would be the first step going forward...which I shot over to the hospital right after my appt and got those outta the way. We discussed going back to work and really it was up to me. I wasn't sure how long I could sit at my desk in a given period...and thought maybe half days would be better. By that time, we were in the hall at the desk and Dr. B. came up and joined the conversation, asking how I was feeling and such. The three of us decided that we would hold off sending me back to work until the results of the xrays were in, just in case something WAS going on still and getting back off work might have been more challenging, or messy to say the least. Sooo, next follow up will be April 26. Tentatively, I'm off work until at least then. However, if there's nothing in the xrays, I'll probably go back before then. Just continuing with PT and hoping it starts to get better!

After my original 12 PT sessions were completed, it was decided by my therapists to add at least 8 more. I did make progress throughout the first group of sessions...I improved 30 degrees bending forward and 15 degrees bending to each side, on both sides. Despite being able to bend 15 degrees more on one side than the other (can't remember which now), I still improved the same amount on each. Seeing improvement in numbers is awesome! Measurements are more concrete than my subjective numbers describing my pain levels.

I'm just tired of feeling the pain when I walk more than 10 minutes...I feel I've hit a wall in healing and am just standing still!

Fingers crossed that progress starts again very soon!

6 WEEKS??????????

February 15, 2010 was exactly one month after my surgery and my surgeon follow up appointment. I had been feeling better but knew I wasn't necessarily ready to go back to work. Moving alot always brought about pain. So, I wasn't exactly sure what to expect when going to my follow up appointment. Dr. B. never really mentioned at my consult what the "post surgery schedule" would be like. My doctor that sent me to her, Dr. D., said once that some surgeons are physical therapy advocates and others just do the surgery and send you back to the world as is. So, off to see Dr. B. I went. Weather was getting bad so the office was crazy, as they were trying to get everyone in and out quickly before it got any worse. It took less than 2 hours for my turn. Dr. B. asked me how I was feeling...said pain was normal even at 4 weeks post op. It wouldn't be until after week 6 that I should start feeling noticably better. She asked if I wanted to do physical therapy and I said "ABSOLUTELY!" That much of my recovery I knew I wanted to do. She was happy with my response and said she would see me back in 4-6 weeks and we headed to the appointment desk. I quickly asked if I had to go back to work and she shook her head no, like I was crazy for thinking I would be going back to work so soon.

My 'script for PT was written...3x a week for 4 weeks...and my appointment was made for March 29! Holy cow!!! The nurse said it was 5 weeks...but something didn't seem right - it wasn't until today...five days later...that I realized my appointment was actually 6 weeks later making it 10 weeks being off. If I'm cleared to go back to work the day after my appointment, I'll have been off work for 10w4d! I'm in shock! I never dreamed I would be off this long, though because I didn't ask the questions at my surgeon consult, I guess I wouldn't know what to expect!

I tend to forget the questions I have in my head when I go see Dr. B. ...like am i cleared to drive??? Minor detail! I knew I wouldn't survive another 6 weeks off without being able to drive. So, I called the nurse from the parking lot to leave her a message about it. She called a couple days later and said I was allowed to drive if not taking pain meds...WOOOHOOOOO I'M FREEEEEEE! Having been homebound for 4 weeks, it felt amazing just knowing that I could drive - even if I didn't go anywhere!

While still in the parking lot, I scheduled my first two PT sessions w/ the same office I had done PT before. . .also the office where Dr. D. is. I was to go in the following day for my PT evaluation, as there was a cancellation, and then two days after for my first true session.

February 16: PT evaluation w/ Alice (who I had for my first PT round in the fall). She did some measurements on my range of motion, which is VERY limited. I wasn't too shocked when I couldn't bend to any of the 4 sides very far and couldn't twist. Back muscles are very tight and they just don't give w/out pain. There was no PT that day but I did get the benefit of electric stimulation w/ ice. . .ahhhh! Heaven! My goal for the short term is moving w/out pain...longer term is none other than softball! Get me back on that field!!! A's short term goal for me was not to increase my pain thru therapy. Music to my ears! The stim was to decrease the pain and it definitely did! 15 minutes of heaven! ...Pain hit me at night, though I think it might have been more from driving for the first time than from any of the tests/measurements...not sure.

February 18: PT really gets started. The goal right now is to increase the strength in my trunk in order to use those muscles when I move. I learned 3 exercises and their value to me and did them. 1 set of 10 for each.... then, my 15 minutes of heaven again to end my sesssion!!! Homework: do the 3 exercises 2x a day, and increase gradually until I can do 3 sets of 10 of each exercise. Whew, that's rough! I expected increased pain after PT...and it happened. The pain hit around 7p and brought tears a'flowin'!!! I was trying to hold off on the pain medicine until closer to bedtime so I tried ice and a hot bath. . . .then finally couldn't take it any longer after round 2 of tears...medicine and sleep.

So, with the first two sessions in the books...I'm still getting better each day. I have PT two times a week for the next 3 weeks, then 1 week of 3x, and then the last session a week before I go back to the doctor. I just might call and try to reschedule for earlier since I'll be done w/ PT...we'll see. As much as I don't want to go back to work, I need to for my sanity and $$!

Healing takes time. . . .