Wednesday, November 2, 2011

#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!

Sunday, October 23, 2011

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.

Sunday, August 28, 2011

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............

Saturday, May 21, 2011

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!!!!!!!!!!!!

Wednesday, January 5, 2011

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!

Monday, January 3, 2011

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?