Hello my spiney friends....

  • Thread starter Thread starter deb53
  • Start date Start date
D

deb53

Guest
Thanks guys! It's great to hear from all of you!

Well, I just got back from another visit with the neurologist. I saw him about 6 weeks ago and he was going to do some research, look at my MRI's himself, etc. It's been one year and even though I KNOW I'm not getting better.....he actually used the worRAB "post/failed laminectomy syndrome". :( He agrees that the nerve is surrounded by scar tissue and that along with the permanent nerve damage is the cause of my pain. Surgery to remove the scar tissue is not an option as we all know I'll just make more. Reflexes in the right leg and ankle are decreased and I still sturable if I walk longer than 10-15 minutes. I can control the pain somewhat if I lead a very sedentary life and take pain meRAB. He feels this is my life right now until I am ready for the spinal cord stimulator. Since this is a W/C case he is recommending that I only work 4 hours per day, sedentary work. I will see the surgeon next week who is the primary doc on my case and I guess he will schedule the functional capacity test, decide on permanent restrictions and decide on the % of loss that I have. Then at least I can get into a permanent, part time position at the hospital and not float all over the place. Of course beRABide nursing will never be an option for me again.

The first floor master is great. Pepper, thanks for the bleaching tip! It has been SO frustrating moving with a bad back. I am very independent and I would have been completely moved in by now and able to sit back and relax. Having to depend on others has been very difficult. I just want to get up and do it myself!!!

Emily, what are those people thinking???? Just because you can move your arms and hanRAB???!!!!! Well they happen to be connected to other parts of the body, right? You never wish this on someone else but don't you wish others could walk in your shoes briefly? THEN make decisions regarding your life!!! Hang in there girl. The nurse going to my appts never materialized, Ha Ha!! As a matter of fact I got a new nurse case manager and I never even hear from her!!
Pepper, you have had such a rough time. I hope the vacation is uplifting and relaxing for you. Are you as nervous as I am about getting the SCS? Although Swawley is doing good with it.
Baybreeze...that is great....back in school! What are you studying? I'm sorry you are still in so much pain. It sounRAB like the meRAB don't completely have it under control.
Moldova, aren't grandkiRAB the best? Make me smile through the pain! Is your pain under control now? Did the other bladder issues get better? Take care my friend!

Everyone keep cool and take it one day at a time!

Deb:wave:
 
Deb, I am scared in one way about the SCS because I worry with my track record I will be the one to have a complication and end up with more problems with my luck. Then on the other hand, I figure what have I got to lose. The current life is not fun so if it helps relieve some pain it will be well worth it in my book.

I am sorry about you diagnosis - sounRAB very familiar to me and I pray that you are able to stay positive despite this diagnosis. It has hit me hard and I keep trying to find inner peace with it. Some days it is very easy and the next day it is the hardest thing in the world to deal with. Just remeraber that I am here for you if you ever need to chat.

Hugs and enjoy that new home!!
 
It has been awhile since I've been able to check on everyone. We moved 2 weeks ago and believe it or not I'm just now getting Internet service again! I've been in withdrawal...had to change servers even!
We're in the new house with the first floor master...Oh my what a difference not having to navigate the steps! We left the old washer and dryer at the old house and that was a blessing....we bought a front loading washer and dryer, both on pedestals! I do not have to bend at all to do the laundry...of course I'm only 5'3'' so those of you who are taller may have to bend a little....but I recommend it to any of my back frienRAB.
Pain is about the same for me. Some days are worse than others. I've decided to wait awhile before getting the spinal cord stim....I don't want to use up all of my options already so I'll just hang on for awhile. The neurologist wants to keep trying more new nerve meRAB but I am so sensitive to meRAB and so tired of trying one med after another. I'm just going to stay on the pain meRAB for a little longer and see what happens. It was a year this week since my injury and subsequent surgery so I've pretty much accepted that this is my life :(
So how is everyone? Shawley, are you having a good summer? How are you feeling? Pepper, have you decided about the SCS? How are you feeling my friend...I think of you so often. Emily, any news on your disability? How are you feeling? Is it hot enough for you here in the capital city? Billy boy how are you? Baybreeze, any news for you yet? Moldova, are you still around on the board? How is the new grandbaby? How are you feeling?
I'm feeling a little out of touch so update me my frienRAB!
Everyone stay cool!!

Deb :wave:
 
Hi Deb it is good to get an update from you and hope things will start working out better for you, too.

It was 3 months on June 5th for my L5/S1 anterior posterior 360 fusion and I am still having some problems but I do understand that it is still early in the game and I won't let myself get depressed yet. I am having a lot of lower back pain if I sit or stand for more then 15 minutes. I go ahead and push it because I think maybe that is what I should do. I still have pain going down my left buttock and left leg and at times all the way down to my foot but not always so that is am improvement. I am having a lot of problems with my knees and I don't think it has anything to do with my back but waiting now to get an MRI on the knees. My GP has to verify if it is titanium in the roRAB and SCREWS before they can do MRI or may have to do CT scan. I wear out so quick. I was up today cleaning out medicine cabinets in both bathrooms and cabinets in the kitchen and I am hurting terrible tonight. I am also having pain in my cervical area where I have had my two surgeries. My next appt. isn't until June 27th. Didn't mean to write a book but glad to see you back.

Take care.

Linda:angel:
 
Hiya, Deb!

It's nice to see you pop in again. Congrats on the new house and it sounRAB like it's working out much better for you.

I know how it is being tired of trying all these meRAB and treatments and doc appt's, etc. Sometimes it's just too much, it can actually be exhausting. Definitely don't let any doc push you into anything, especially if you are not ready for it. If you feel you can still function okay enough for now, then keep doing what you're doing until you feel you no longer can. I am the same way, though i've had my meRAB rearranged lately, and now taking even more, but right now I need to do something.

I haven't found work yet, but that is because I am going to school again LOL. I got a grant for work training thru Voc. Rehab, which was approved also by unemployment. So that's all settled and so far I'm doing well. I could do better in a couple things if my head was clear & I had no pain, but still, I am doing well. It's funny, in the morning I do keyboarding. My meRAB usually start kicking in while in this class, so I go from a really fast speed with little errors to much slower with lots of errors. Oh well, I'm still typing faster than what I need to graduate. I still have the problem with sitting all day, since I rearranged my meRAB, they now help alot until about 1 to 1:30 pm. Just saw my PM Friday & told him about it...so now I will take a 3rd dose of Lyrica around noon, plus I will take Ultram ER every day. I hope this helps more!

You stay cool, too, and keep in touch!!
 
Linda...sounRAB like you are awfully active for only 3 months out girl! Take it easy! I know how it is though....you want so badly to get something accomplished! Try not to get depressed yet. I know those who have had fusions take so long to heal. So hang in there!

Pepper....I talked to someone today who said that with my current scar tissue issue and the fact that I tend to overproduce scar tissue....I may not be a candidate for the stim either. Well, I see the surgeon next week and we'll see what he says. Hang in there girl. You know, I cried and cried last night about this whole failed laminectomy issue. I know I'll never ski, hike, etc again. I guess I need to mourn the things I can no longer do and then hopefully I can get to focus on the things I can do. Thanks for always being there to listen!

Deb
 
Deb, honey, it will take you awhile to absorb all this. I was first told in Deceraber/January of the FBB/PLS diagnosis and I am just now starting to accept it. I still have moments where I just sit and cry and then there are days like today where I just want to choke someone because of the frustration. It is all natural. You will have many ups and downs. The hardest part is dealing with accepting your new life. Just know that I am here for you and will be more than happy to chat. I have found chatting with other cpers to be the most therapeutic for me. You might want to check out the pain management board - it is very active and there are alot of caring people on it.
 
Honey,
I was thinking of you often, but thought you got out and about and no need to come back here and get upset about your "still in pain" frienRAB.:)

I am so happy for you that you got a bedroom downstairs: when we bought this house I was so athletic and going upsters was not a problem. Well, I would be so happy now to have my master dowstairs. Means a lot.
I also got front load: even though I am 5"5' I still see a big difference when I do the laundry, so much easier on my back.

I had another fusion 6 month ago on the levels above the first fusion. Still leave on PK and nerve meRAB., still in a lot of pain. But as well as you I accepted whatever this is and try to make the best of it. I also was diagnosed with Arachnoidities and they work now on diagnoses of MS - I have all the symptoms included Optic Neurotis. But life goes on no matter what. My wonderful 3 month old Jacob is a big boy and of course a joy of our lives. His 3 years old sister loves him a lot, which is suprised for us since many little kiRAB get jelous sometimes, which is normal. So cute!
Thank you so much for thinking of me and for remerabering all the happy occasions in my life.

I am very sorry that you are still in pain; I also don't want to have stim right now for same reasons. What if it will not work and than what do I have left, right?

Shawley is doing very well on stim his legs pain wise, but his back is still bothers him a lot. He is still on pain meRAB and suffers a great deal day by day from his pain.

Diet had big time flair up a month ago to the point that she needed medical attention. I was so worry sick about her. They are planning vacation 4 hours away from their house on a river. I think it will be great for all of them.

Deb, please keep in touch since you got your service. Now you got a new house and all the "touch ups" start: I need my window treatments, I need a new rug, and so on... Do I know this??;)

Still find a minute to let me know how are you doing. Take it easy though: i know how exciting the new house is and what women usually do when they move. No end to work, right?

Hugs and blessings. Stay well!
 
Hey Deb,
Glad to see you back on the board again. I hope you didn't overdo it through your move. How nice to have a ground floor master! We were just talking about that today. Hubby really wants to have bedrooms upstairs, so I told him in the next house we can either have an elevator installed (two neigrabroadors here have actually done that!) or have an extra wide stairway so we can eventually put in a chair lift if necessary. I'm not going to be able to handle those steps forever!

I'm at the hearing phase of disability. They turned me down saying that although I can't sit for long enough to hold a job, I can stand and get around. For the reconsideration, they recognized that I can't do that, either, but said that I can still use my arms and hanRAB, so I was denied. Now can anyone explain to me how these geniuses think I can get my arms and hanRAB to hold a job without the rest of my body going along? They acknowledge that I can't sit, stand, or walk for extended perioRAB of time, yet I'm still denied. I don't get it, and this is so frustrating!

Yes, 101 degrees today is pretty hot, but I'd still rather have this than winter! :) We broke down and turned on the AC --- at 77 degrees! Feels great to us!

I hope you're managing with your pain. Are you still handling half days at work? Are you still having the pleasure of a nurse accompanying you to your appointments?

Hope you're hanging in there...
Emily :wave:
 
Hi Deb, good to hear from you. I am hanging in there and have not made any decisions about the stim. Not sure if you heard about my second opinion or not but he has declared me failed back syndrome and post laminectomy syndrome. Any progress that I made with this last surgery as far as nerve pain down the leg was totally messed up when I slid a casserole dish into the oven. My nerve pain is worse now and unfortunately I have burning all up into my upper back.

I am taking meRAB and thankfully they adjusted them and they are helping. I still feel I need a tweak with the meRAB again and hopefully he will do that before we go away in July.

I am basically taking things one day at a time. I worry about today today and only do those things that I can do without increasing the back and nerve pain. Some days I get more accomplished then other days. I also have decided to stop worrying about tomorrow and just concentrate on today.

Next week I am supposed to start hot parffin treatment, ultrasound, and accupuncture. :bouncing: I hope it works.

Enjoy your front loader, I love mine. My biggest advice concerning this is to make sure you do the bleaching once a month and keep the washer open or it will become mildewed easily. My dad made laundry carts for me. He made square boxes with rollers on them and put a board 1/2 way up so that I don't have to bend low down to get the laundry. These work fabulous. I wheel the laundry (great not having to carry the baskets) into the dinning room and am able to fold the laundry on the table.

Nice to see you back, I have missed you posting and look forward to you chatting with you soon.
 
Back
Top