Hi All,
Guess I'm just wanting to not feel so alone this time. I had my regular every 6 week checkup, I have seen my orth every 6-8 wks for the last 2 yrs. now. I'm about 8 months out from my 3 & 4th fusions, Last month I heard a loud pop in my back and have had pain in that spot ever since. the spot is exactly over the last screw head. Well my fusion seems to not be growing. it's not white almost at all. We have been very hopeful up until now, it has gotten somewhat noticable on the xrays, but he says by now he should be seeing solid white and we see the edges of the cages still. So off we go to the CT machine again. Our biggest fear being loose hardware again since the fusion isn't solid yet. I still have pain daily to different degrees and I"m still on all the meds that I have been on since the surgery in nov. Then I hear the dreaded word I had hoped to not ever hear, pain management center. I know that means he has given up trying to fix me. I can honestly say I thought he would have given up long ago. I have had 4 trys at a fusion in 3 yrs. ALL with BMP, according to him the best stuff there is. I am the ONLY patient in his practice(all the orthos put together) that has not fused with the BMP. I dont smoke, lost weight, take vitamins, try to remain active, I do every thing he tells me to do and still no fusion!!! I can just scream im so frustrated. Now I have a permanent future of hardware securing my vertibra at a gr 2-3 spondy, and possibly a lifetime on 2400 mg. of neurontin and other pain killers for life. I can't begin to tell you how that makes me feel. The CT scan is to make sure the level above isn't going bad now, as well as confirming there are no loose or broken screws causing the unexplainable pain I'm still in. The only good news is that my nerve damage pain in my leg & foot has quieted down alot,it only hurt now when I am on my feet alot in a day. I'm very grateful for that.

I'm sorry for the long post, just need to vent a bit, and hope to find someone out there who has fused but didn't really start to see it till late in the year. I know thats a long shot but one i'm hoping for.

Thanks in advance.

God Bless

Carol

I am so sorry to hear this. I can't believe that you've been through so much. Is he thinking it won't fuse at all?

I've heard the popping in my back and the doc said everything looked okay on Xray after the fact. I am hoping that your hardware is still intact. I'll pray for you.

Ahhh Carol! Sorry that you did not get bright news at the visit. BUT.. there is still SOMETHING going on in there. You could be a late bloomer is all! Seriously now!!! My doc was so relieved when i showed up last week looking like I do. He was so concerned and had no clue what to do about my swelling issues I was having. He was assuming bad things that the surgery had failed. I could actually see the relief on him (and I had no clue he was worried about me). I ASKED for an Xray to see if we could see if anything was happening in there yet. He said it was a bit early.. but sure. It was dark last month and cloudy now. Yipee!

But we talked abit about my last 13 weeks and he said that I was indeed a late bloomer in my healing process (excluding the fusion part). As healthy as I am aside from the back.. it's been a real upheal climb. And will probably continue to be so. But i will take progress over no progress anyday!!

And I say all this as you cuz.. you may be a late bloomer with the fusion is all! You may not fit into the "average mold" and it is just going to take longer to fuse is all. You still have cloudiness in there.. so all is not lost Carol! Don't give up yet. Don't you dare give up now gal! You've been through so much already!

Pain management is an ugly word I know. But that does not mean forever.. but you need more specialized treatment to help control the pain right now. Who better to help with that than our good ol PM docs. Very compassionate and helping docs. I love mine! Well not literally, but you know what i mean.

Carol, promise me you'll keep your chin up and just take it one day at a time and let's see what the CTscan has to say. If your hardware is in tact.. that might give you some solace and it's a waiting game unfortunately.

So glad your nerve pain is under control. That is one of my biggest issues, but can't take any nerve meds, so I have to deal. But my PT says she is waking up all sorts of things down there and the nerve pain is "normal" to have right now. Ok.. I'll go with that for now.

Sorry again you got negative news, but all is not lost yet Carol. Hang in there. I will be thinking more heavily about you and will keep positive for you. All my best to you gal!

Tammy:wave:

Carol.. just a question.. has your surgeon discussed the idea/option of implanting a bone growth stimulator at the fusion level?? I would think that would indeed be an idea to contemplate on. Especially with the slow progression thus far and previous failures. Hmm.. just a thought.

Take care. Tammy:wave:

Hi Guys,
Thanks for the encouragment! It's so hard to keep your chin up, I know there is still a chance, I have at least 4 more months to say for sure, I'm so sick of waiting for nothing to happen. I should be glowing by now from all the films they have taken, lol.

Thanks again, I'm gonna try to get out of this bumbed out feeling, it's not what I was expecting to result from this visit at all so it really hit me like a ton of bricks. I know I'll have to adjust to whatever my body has in store for me.

I don't know what I would do without this board, I can't let my family know how rough this is right now for me. We finally got some bills paid off, a new car, lots of finacial relief with the SDD approval. I can't bring them down with my attitude to this now. So Thanks for letting me get it out here.

Dr. did consider the implant you suggested, he was leary about it due to the sensitivity of my body, he said there can be lots of infections and issues he didn't think it was worth trying for me. I do have an exterior bone stimulator that I have worn since I came home from the surgery, so far not much help there.

God Bless

Carol

While Pain Management seems to be a dark and scary word it shouldn't. Going to see a PM doesn't mean you'll automatically be prescribed more or stronger medications. In fact, a GOOD PM will try alternative routes first, which might be what your doctor is after.

A full Pain Management facitily or doctor will often try things like massage therapy, TEN's units, psychotheraphy, physical therapy, aquatic therapy, various injetions, teach you things like meditation, focusing etc so that you have alternative tools in coping with your pain.

Additionally just because you see a PM doesn't mean you'll be on medication for the remainder of your life. There's a chance you may be, it depends on your health and condition but there are people who do get better and no longer need to see a PM.

Doctors often send their patients to a PM because they have tried all the tools in their toolbox and do not know what else to do for you. Additionally where we live the laws regarding medications is quite strict. Your doctor may not feel comfortable in prescribing medications that you may very well need. You really need to ask yourself, is suffering in pain worth it? Most people will tell you no and it is best to seek out a PM who knows his stuff.

Another thing I'd suggest for you is an actual Pain Management Program. Many of the hospitals in our area offer such programs. They last for 6 weeks and you go each day for about 5 hours. You learn the basics as described above and most do aquatic therapy. There is no medication invovled and they do get the family invovled so that they understand what you are going through and give them ideas on how to help make your life more comfortable.

When looking for a good PM you of course are first limited by your insurance but after that look for someone who offers a full range of services. Many of the doctors in Lake and Cuyahoga counties only do injections, which over time and in general can impede your healing and cause you greater problems. I've seen many of them in our area and was very disappointed by most. I particularly was not happy with the one that is in Mayfield who is associated with the Cleveland Clinic because they do injections only. Most likely these would not be beneficial to your condition.

There's a great PM on the east side who is affiliated with Lake Hospital System and his name is Dr. David Demangone. If he is on your plan you might want to try him first. He often will work with various modalities and is really up on modern technology and pain control. It isn't just about medication for him, it is about helping the patient as a whole.

Also keep in mind that the goal of Pain Management is not 100% relief, it is more like 50-80%. To achieve 100% relief is unrealistic and can even be dangerous.

Good luck Carol, I hope you will reconsider seeing a good PM, it could help to give you back a portion of your life that might be lacking or missing!

Barb

ps. grats on the SSD approval, just be sure you save a bit to pay your taxes, some folks get nailed on that if the amount paid is large and you have other incomes :)

Hi Barb,
Thanks so much for the info, you certainly gave me a positive twist on looking at PM. I always thought that it was a way to brush off a patient that can't be helped surgically, and I really didnt' think my surgeon is like that. He has stood by me for almost 4 yrs now. My Dr. was part of the cleve. clinic, I don't really care for them, but loved my Dr., but had no choice with my ins. My Dr. left them because he relocated and he didn't like them either. I can now hopefully choose the other major hospital system in our area, thanks to medicare benefits now. I know several people in this other system that can connect me with some of the best specialists in the world, I have been doing some research since I started this thread. I do have at least a more optomistic outlook especially after reading your post. My doc did want to get a second opinion from another after he sees the results from the CT, so we will see. He wants answers for the both of us, he had said he just stopped having nightmares about me healing properly and now they are back, to me that shows that he truely does care about my rcovery.

Once again, thank you so much, I feel so much more in control than I did this morning. I felt like just giving up, but I think I might just have some better options now.

God Bless

Carol

Hello Carol-
I've been having an "episode" of neck pain for the last few days. This is a new problem that my new doc MRI'd and found a herniated disk at C5-6. We went ahead with the lumbar revision (attempt #2) with BMP and so on because he was hopeful that this cervical herniation might just heal with time and the recuperative rest from my surgery. Well, I am in serious pain since 3 AM. My lumbar region? Can't even think about it. I've been taking max dose of oxy all day and I'm at a level 4-5 and barely able to move my neck at all. This is episode number 3 since March and not as bad as the first but all on my right side where it has always been all on my left side before. So, today I fret and wonder if this is the same problem or something new. I am waiting to hear from the doc and was able to email a report to him today (kind of neat).
Like you, and like all, I am trying so very hard to be bright, upbeat, cheerful and positive all the time. I am trying so hard to be a good patient and I am doing it all just as the doc orders. And yet I know, was told, that the numbers are there that force me to hold onto my heart and to remain emotionally prepared for a less than perfect outcome. And a day like today just tosses me into the pits. How am I going to handle returning to work with this on top of the lumbar problem? This morning it just seemed like a little too much to even cope with.
So, when I read your post I was right there with you in that office just trying to take it in - get my mind around the very idea. It ain't easy. And yet, I do feel like you have your feet planted and your knees bent. You are a rock, Carol, and being terrified and overwhelmed is just a healthy indication that you are - alive... and human.
So many of the good people on this board have already covered what I really haven't any experience with (PM). I will just put this in. I am very lucky in having a fantastic PCP who keeps track of my case and all of my health issues. If I don't call her with an update - she calls me. Since this failed fusion problem was identified she has 3 times asked me to monitor myself for signs of depression. She, like me, feels depression is no different than any other medical illness and a likely problem the longer this 'ordeal' goes on and the more chronic my pain becomes. I hate the thought of trying new meds. But I am on the lookout for signs and I will use any help I can as soon as I feel I am working too hard to 'appear' jolly.
I do hope we can stay connected as we keep trying to put another foot forward, Carol. I'm so glad the nerve pain is giving you a bit of a break. I have been waiting to feel good enough to start telling some of the funnier stories about my hospital stay but I'm nearly spent now.
But here's one sure to please: after extensive planning on how best to get me home from Boston since I insisted on being able to lie down, I rejected my hubby's plan to pay 1K to a Medical Transport service and accepted the offer of a loan of my good friend's Subaru Outback since it was just right for me lying in the back on a tarp and blankets and so on.....
Well, I came home in the back seat of a cab! My friend's car (quite newish) died the morning of my discharge! It was a 3 hour nightmare until I picked up the phone and called City Cab and reached the nicest man from Lebanon who ever walked the face of the Earth. He arrived in 10 minutes, and 2.5 hours later we were home. It was perhaps the hottest ride since the AC didn't reach back to me through the plexi glass portal but he stopped and got ice and wet a sheet and packed me as best they could. My hubby and Sal are life-long friend's and I say to one and every Car Rental Company - be damned! My friend was and remains mortified. But this is the way of life. It goes awry. What was really shaping up to be a horror has become a very beloved memory - our cab ride home from Boston with Sal!
Be good to yourself, Carol. Suzy-Q

Hi Suzy,
I'm so sorry that your in such pain again. It does seem like it never ends. I always tell my boys that EVERYTHING happens for a reason, we may not ever know that reason but there is one for it. Well they are young and dont' understand life like we do yet. I do know that if I get nothing but the bonds I have formed on here, I will be a very lucky person for having that.

I do wish I could offer you some lil tidbit of wisdom on how to deal with this pain monster we are suffering with. I too am learning so much as I go along. It's certainly not something I want to get an education in but I'm getting it anyway.

I love the cab ride story, it's funny how things work sometimes. I remember my last hospital stay it was a 3 hour ride for me. I had a nurse at the beginning of my 11 day stay, she was very concerned for me, she came on her lunch hour to visit me when she heard that I was depressed and not eating. She had asked me what I wanted if I coudl have anything. I was having trouble with my diabetes because of the steroid shots, so I couldnt have any sweets, I told her I wanted chocolate, well she never did bring any back to me. I didnt really think she would because of the physical problems. Well On the 11th day I was getting wheeled out to the van and I hear someone calling for me, it was her holding out a hershey kiss, she didnt forget. She hugged me and wished me well, I dont even know her name.

It's amazing how many people have touched my life in lil ways that cause me to thank God every day for what this terrible problem has brought into my life that I woudl not have had otherwise.

Hang in there, as I hope I can, till this passes. It will make us both stronger people, and hopefully we can someday return the kindness of that hershey kiss to someone who is just starting on the journey we are well into now.


I will keep you in my prayers along with everyone else. God Bless

Carol

Hello,
I am so sorry to hear that your not fusing. Please do not give up hope. Fusion has been known to take place up to 2 years. Keep your chin up.
Sheri

Carol, I am sorry that you arent finding relief. You brought up a good thought. I too thought the final words of pain management were scarry. I dont want to go to a place that is just a shot factory and do nothing other, than see which shots help you. But, I have sinse learned that there are pain clinics and thee are pain centers. The centers use all parts of your body mind and spirit to heal you. They have messeuse(sp?)chiropoacters,podiatris, gen Dr. etc. to find a plan to help you completly learn how to learn to live with our specific requirments. I know it is only time for me, before my Dr. requests I see one, so I havew started looking into the different centers around here. I hope you find a very good one:)

Keep us posted,
Lorie