Never again

[phylly]

Arghhhhhhh, worst ever day after,
still in hospital. 6 hour surgery, pretty weak, i'll write more soon. Got both discs out! Went well.
Phylly

[New-disc]

Hello,

Thank you for your update!! 6hrs of surgery ... yikes

Please keep us posted.......

Your in my prayers

Todd

[Justin]

Phylly!!!!!!! Good to see you're posting... rest and begin healing. Talk to you soon.

Originally Posted by phylly

Arghhhhhhh, worst ever day after,
still in hospital. 6 hour surgery, pretty weak, i'll write more soon. Got both discs out! Went well.
Phylly

[mmglobal]

I have spoken to Phylly a couple of times today. I have to say that she sounds great! It's bee a rough ride but it sounds like they are getting the pain under control. She's been up and out of bed already and hopes to get up more today. Sounds like all great news!

All the best,

Mark

[Nairek]

Glad to hear that things went well! I bet you are weak. A six hour surgery can take a lot out of you!

Take it easy & rest. We'll be here waiting for your updates!

Karin

[dshobbies]

Phylly,

Good to hear from you. Now that your freezing fear is behind you, you can spend all your energies getting better. I wish you well, Dale

[Cindylou]

Phylly, so good to "hear" your voice post-op. 6 hour surgery is huge,, so you rest and rest some more. Can't believe you got out of bed already. Good for you. Better days are ahead Phylly. Thanks for posting.

Cindylou

[twisted]

That's absolutely wonderful news Philly. Im so pleased for you and look forward to reading all the gory details.
Take Care Cathy

[runner]

Phylly,

I was starting to worry but I figured you were in just a lot of pain and exhausted from the surgery.
Say, "Hi" to my friends at St. Joe's and I hope they are taking very good care of you.
I knew you could do it and now the hard work of recovery begins. Make sure the nurses keep your pain under control. And please keep focused on your recovery and don't worry about all the "extra" stuff.
You made it girl. Congratulations.

runner

P.S. Let your husband pamper you...it is almost Valentine's Day. (heart)

[Liz]

Hi Phylly,

i'm SO relieved and happy for you!!! you survived the surgery, i assume you can feel your legs, there's no trauma to your veins, and i hope to only hear of gradual improvements for you... wow. i think this is a sign of good things to come for you Phylly. please be patient w/with your recovery, stay positive, and keep us posted.

take care,
Liz

[Terry Allen Blackburn]

Phylly:

I am so glad that things are going to be moving in a better direction for you. It's been a rough road, but you've had an amazingly positive attitude and disposition. I've been at a drug court conference most of the week, and Rotary's 57th Annual Spaghetti Dinner last night, so I have been swamped. I have been thinking about you and hoping, and praying, that it went well. Now we can support you in the process of true recovery this time around. Hang in there, take the happy drugs , behave yourself (pot calling the kettle black). I look forward to hearing more from you in the days ahead.

Terry Newton

[SandyW]

Dear Phylly

Great news! Praying for a fast and increasingly pain-free recovery. Hang in there, know you can do it.

Was your son able to stay with you thru your surgery. Take advantage of all the support and "mothering" you richly deserve.

Sandy

[ImpOssibleOne]

Good news and great to see you posting already. I had a fusion on Tuesday as well, albeit a less complicated one, but we can compare notes when you get home. If you're up walking already it shouldn't be long. Good going! I'm sending healing thoughts your way.

Adrienne

[treefrog]

So glad that you are on the other side now. Up and walking already, that's fantastic. Rest, rest, and rest some more. Look forward to hearing more, when you are able.

Very happy to know that you are okay.

[Justin]

Hey Phylly,

Any updates? I know you are probably focused on recovering... I just wanted to drop you a line of support. I hope all is well.

[phylly]

Hello All,
Thanks for the wonderful wishes, I tried to get something down but I guess it was not too coherent. Saint Joseph's is a beautiful hospital. All the staff and doctors are so happy and cheerful. I have been struggling with some pain issues. I figured that would happen because of how long I had been on drugs. The surgery went real well and as far as I can tell; a lot of my pain is gone, except for the back and front pain. My Dr. did the percutaneus surgery where he did not scrape the muscle away from the bone. This should give me more muscle to help in healing. Dr. Carlson also said that he recommended some bone treatment to aid in hardening the bones since mine were somewhat spongy. This was good news for me. I had osteopenia from all the epidurals and I was glad for a cure over several years.

I have been rather zonked out the past few days as they regulate meds from the pca to the pills. I thought I would be going home tomorrow but haven't heard the final word yet.

Adrienne, I hope my twin is doing well too. I forgot the stomach bloating and the back hurting too. I can't wait to sit and get my fingers uncovered from the IV's. My hair is longing for the shower, soon I hope. I guess I was amazed at how the two doctors were able to get the discs out. I hear there is a cage around bone.

I am not sure what else to write, so please ask whatever you need to find out, if I can help you. Mark, thanks for checking up on me. I'll be talking to you all soon.

Phylly

[runner]

Phylly,

Good to hear you are progressing.
Hopefully, you will be home soon.

I think the cages are what they put in between the vertebrae (they are cylinders with empty space in the middle) and they pack them with bone or other stuff (BMP, cadaver bone).
If you have a bracing on top (posterior (back) part) of the vertebrae, that would be plates.

I would expect to be loopy after the anesthesia and other medications. The PCA is nice but I found that with the pills, that the gut worked better.

I am happy you find St. Joseph a good place. It is a nice hospital and I hope your experience is all positive. I am surprised you can type as much as you have. Just rest and feel better.
Are you getting up with physical therapy every time?

I'd come and visit you if you were closer and I felt better. But I feel confident that they are taking good care of you. FYI, that is the new hospital. It opened in 2007 and I went out before I could work there.

Take care,

runner

[Liz]

phylly,

i'm so glad you are doing so well!!! you sound surprisingly coherent, although i imagine that post took some time to write! please be careful, i recommend lots of ice to keep the stomach swelling down, and i look forward to hearing more about your operation when you are comfortable at home recovering.

take care,
Liz

[ImpOssibleOne]

Hello my twin! So good to hear you're in good spirits and set to go home soon! Yes, it will feel great to become untethered from those IV's. and it will feel even better to ditch the gown....and even better watch the hospital grow smaller and smaller in rear view mirror. The shower will be heaven...as will be your own bed at last.

Only advice I have is to walk, walk, walk..as much as they'll let you. The more you do, the better you'll feel. I didn't buy this concept either at first, I would have happily lounged my with my PCA pump all week, but they forced me up and out. They were relentless over my protestations and ghostly pale face but there were actually right. The more I did, the better I felt.

Yeah the belly bloating is a drag *and* there's a pouch atop the bloat!
I suppose we'll have to forgo the swimsuit portion of the competition this season.

[Roblin]

I am so happy you are on the other side and they were able to get the disks out. I will be anxious to hear all of the details when you are feeling better. Best wishes on a quick and wonderful recovery!
Roblin

[sarah.p]

Hi Phylly,
Im so glad that the surgery is done, and you have posted!
You seem to be doing extremely well, and im so pleased to hear that all went well for you.
Wishing you very much positivity for your recovery, rest well and take things very easy, Im still smiling after seeing the surgery done and your posts!
warmest hugs
sarah xx

[Cindylou]

Phylly, so glad you are at day 4 post-op already. I know the post surgery pain is no picnic, so hang in there. I can't wait to hear when they give the thumb's up to release you from the hospital. I pray this is your final surgery and pain free days are waiting for you down the road. God bless.

Cindylou

[treefrog]

So nice to hear from you Phylly. You sound like you are doing extremely well, this soon after surgery. And I am so happy that a lot of your pain seems very much to be gone, this is very hopeful news.

I look forward to hearing more about your experience, and your recovery in the days and weeks to come. I hope you are able to leave the hospital soon, and make your way home where you can be more comfortable.

I wish you the best for a quick and easy recovery Phylly.

[marion]

Hi Phylly, well done you made it!!! I really hope you are getting some SLEEP! Its so hard at this point, but when it comes, its magic !!!so here;s wishing you lots of healing zzzzzz's Marion x

[Terry Allen Blackburn]

Sleep is a wonderful thing for the body, mind and spirit. It is amazing about the healing properties of proper rest.

Maz:

I hope you are doing well also? Have not heard from you in awhile.

Terry Newton

[Poncho]

Wow - to be posting that soon after surgery is a good sign.

Now - sending healing & pain reduction vibes

[phylly]

Poncho and All,
Your vibes must have worked because today was much better. I actually got dressed and took a short walk outside. What a great feeling. I am really taking it easy but trying to walk around the house. We have a two story so the stairs are still hard. I know I will get stronger each day. My brain is starting to defog now and the teary yesterday was not around.
Thanks everyone for being so supportive. I have a good feeling about this surgery and hope it is the last!!!!

Terry, How are you doing? I hope that you are feeling a lot better from the shots. I am catching up on all the news and threads today.

Sweet Sarah p, how are you too? You send the nicest messages.

Anyway, I feel all the love and it really helps. Hugs to you all.
Phylly

[Cindylou]

Phylly, how many days are you post surgery? Talking a short walk is wonderful news. My prayer for you is that you wake up every morning feeling stronger, glad you had the surgery, and that you begin to feel a new spring in your step. You have had a rough road. It's your time to feel great.

Cindylou

[Terry Allen Blackburn]

Phylly:

Thank-you for asking about my health. I am doing fine since my injections. They seem to last me about three months so I am hoping that they last longer this time around. I am almost at the three month mark and feel pretty good still.

I am glad to hear that you are getting around a little better. I sure hope that this is the answer for you so that you get back your quality of life and can move on from being in a pain state.

Hang in there.

Terry

[phylly]

Cindylou,
Thanks so much for your words of encouragement. I know I am only 10 days post surgery but we all have such high expectations of ourselves. Yesterday felt so good and of course today is very painful. I have to learn to pace myself and forgive myself when I just can't do anymore. I seem to remember you going off to your cabin so soon after your surgery? I am not planning to go anywhere soon. I was hoping to go to a few weddings at the end of March and early April but I am not sure about the car rides. How soon were you able to ride in the car for more than 1 hour? I am happy with my progress thus far and I do feel that the walking is great. I am sure the swelling from surgery is still causing some nerve inflammation and I have a long road ahead to come off my high dosages of meds. I do not know how long my Dr. will ground me from driving; i will see. Thank you again for your kind thoughts, they mean so much to me.
Phylly

[ImpOssibleOne]

Hey Phily,

I have to keep reminding myself that the nerves are inflammed from the surgery and will get better. If our incisions are as tender as they still are, (yours better be or I'm leaving and never coming back ) think of what our spines must be like.
We both have a long way to go. And the direction is up, up UP.

Glad to see you are doing well and welcome to the recovery roller coaster.

[ans]

Phylly and her twin:

I am glad both of you are healing well. This certainly w/take time Phylly. I understand the urge to drive and tool around. It's great that you are walking in fresh air in "the real world" and feeling vivified.

You've been thru a huge ordeal, physically and mentally. Baby yourself too and I love your attitude.

Wishing you my very best.

See you at the Spinal Olympics in a few years.

I hope that you're off the big pain guns now/soon.

Allan

[Maria]

Phylly,
Having high expectations is sometimes difficult to meet. Let your body be your guide not your mind this time and perhaps you can accept a speed that is a bit lower gear for now yet progressive with a few speed bumps thrown in for caution.

To me it sounds like you're doing quite well given your recent surgery date and I hope you continue to progress well as you go ~ as others have said be patient with yourself and kind to yourself just as you would a family member who has undergone a surgery of this magnitude.

Take good care, Maria

[Roblin]

Phylly, It sounds like you are really doing well for no farther out from surgery than you are. I am so happy to hear of your progress. Keep up the walking as you can. If you don't mind me asking, how long were your discs that were removed in and how many levels were fused?
Praying for your continued recovery.
Roblin

[phylly]

Hi Roblin and All,
I am walking around the house and I am taking it easy. I still have to shower when my husband is home so he can tape up my back incisions so I can't wait to have my stitches out tomorrow. I still have a lot of back pain and am pretty dependent on my patch and percocet. I am hoping to cut my percocet down in the next week but when it wears off-ouch!

I feel really blessed at how well I am doing. I had my prodiscs in 1 year and 3 months so it was not too long. I had 2 levels fused L4-S1. I am hoping that I will not be too stiff because I could move so well with the discs. I know it will be a tradeoff and I hope that I will not have the pain I had from bending with the discs. My buttock and leg pain is much better although I do not spend a great deal of time sitting. I remember my BLT's. I still have calf pain too but I am hoping it is just nerve inflammation and will lesson over time.

Thank you all again for the loving support. It means so much. I feel like I have many spiney friends to check in with who understand what happens. I hope I can attend the Spiney Olympics some day along with the Spiney ski trip. That is a lot to look forward to but for now I just want to get through each day and hope for a little less pain as time goes on. I will get my OP report tomorrow so I can share more details on the surgery. Thank you for keeping in touch.
Phylly

[runner]

Phylly,

Way to go. Keep up those walks and wean your medication when you need to not when you think you need to.
It sounds like you are healing nicely, but remember easy does it.

Runner

[phylly]

Hello All,
I went to the Dr. Today for my two week update. I am feeling stronger each day. My stitches came out, and xray was taken, and I got to give my doctor a hug. He feels I am doing very well but I will still have some good and bad days and not to worry if I am feeling bad. He wrote a prescription for Forteo, a bone strengthener. I will need to be followed by an endocrinologist but I am glad because my bones have weakened this last year probably from all the epidurals I have had.

We talked about the surgery and how much bone came out with the prodiscs. He said very little because he was able to take them out anteriorly. He did put in titanium rods and pins in the posterior. He also said that my left leg weakness and muscle spasms were caused by having to retract the psoas muscle and that was normal and would go away. He was very positive about my outcome and will see me again in a month. Dr. Carlson also said that I could drive when I felt up to it which I don't yet. I was surprised about that and don't want to push it.

I was pretty tired when I got home and have been a blob today but in a good mood. Tomorrow I am going for a nice long walk. It seems like I have been able to cut down the percocet a bit and I am going to try to get down a bit more before I see my PM and he cuts it down more. My husband told me that the BMP used in the surgery causes more inflammation in the surgical site and probably a bit more pain for awhile so I feel I am right on track for now and I am not letting the pain get too out of control.

Thanks again for all the wonderful support I have received from everyone.
Phylly

[Justin]

Phylly,

This is fantastic news! I am so very happy for you. In a couple months, this will all be but just a memory.

[Cindylou]

Phylly, thank-you for the detailed post. It really sounds like you are right on track. I can't believe you are already 2 weeks post-op. When you wrote that you were going to take a long walk, I had to look again at where you live.....because we've got a half foot or more of snow coming today! You forget that some places in the world are still enjoying balmy weather! I actually love the snow. Just wish I was able to ski in it right now. Hang in there. Keep posting. Glad you are coming along nicely, with a few expected bumps.

My best,

Cindylou

[Gil Denis]

Hi Cindy Lou

Great news, so glad you are doing so well, we love snow.
Are you able to go to the gym to walk or go to MOA to walk around.
Some day we will ski again

Take care

Gil

[Gil Denis]

Hi Philly

I am happy you are doing so well, just keep doing all the good things.
You are an amazing person.
Best wishes
Gil

[dshobbies]

Phylly,

It's great hearing you 'talk' about the future. Surgical healing does take its sweet time but you'll get there. Sounds like you're doing great.

To the rest of the world, it should be in the 60s, 70s the next few days. Walking outside is pretty pleasant!!!!!! Maybe a light drizzle this Sunday.

Dale

I should also mention our water shortage... the good and the bad.

[Liz]

hi phylly,

that's great news!!! i hope you feel better and stronger each day. maybe don't drive for a few more wks!

i think your early revision success is one of a kind, but it's nonetheless inspiring!!

when you're up to it i hope you'll elaborate on your vessel guard for people since my impression is it's what saved you from a more invasive surgery to remove L4-5 through the psoas muscle, which is how i believe most Prodiscs are currently removed at L4-5.

my understanding from Phylly is the scar tissue stuck to the vessel guard and once it was peeled up the Prodiscs were visible without scar tissue. This is still a VERY risky op b/c of the aorta/major arteries around L4-5. i would encourage anyone facing anterior fusion or ADR to ask their surgeons if they plan to use some sort of a vessel guard in the event that a revision is needed down the road. Perhaps vessel guards will also allow patients to revise their ADRs to other ADRs in the future... i was told this may be possible if the ADR could be removed the way it went in b/c this may avoid removing too much bone.

anyway, deep thoughts, but i'm just so happy for you phylly!!! enjoy your walk!

best,
Liz

[phylly]

Hi Liz,
I think you explained the vessel guard better than I could. The only part I would add is they left same vessel guard in place and put it down again once the removal was completed. The vessel guard allowed the Drs. access through the front and therefore very little bone was removed. I realized that I was very lucky because vascular accidents can happen and when they do they are life threatening. That is why most Drs. chose to go in from the psoas muscle or just fuse over the discs. The Drs. that remove the discs believe that you heal better when they are out rather than fusing over the hardware and putting more in. Liz, when I read the OP report it talked about gently retracting vessels. They also slightly distracted the vertebrae to get in the bone cage and had to scrape/score the endplates so the bone could adhere. It sounded like they worked very slowly and carefully. Let me know if there is anything else I should talk about?

Liz, Keep us up to speed on all your tests and what you might be doing?
Justin, I was glad to see you posting, I miss you. Have you decided what you will be doing? Thinking about revisions are pretty stressful as there are so many different opinions about what to do. You are both such thoughtful people who have researched this a lot. I know you will both make good decisions.

My walk was wonderful but I did get pretty sore after and took a nap. Of course the phone rang and woke me up. So much for being lazy. What a beautiful day today is here in the OC.
Phylly

[Maria]

Hi Phylly,
I just started Forteo the 10th of Feb as my t score is t - 2.6 with a very strong history of osteoporosis (mother/deceased, father, brother).

The first few days injecting myself I had quite a strong backache which may or may not have been associated with the start of the medicine but I had not been having any back pain of late or very minimal.

Then it seemed that this feeling went away after several days and every other day or so I would feel like my joints ached very much, my legs ached/hurt, and I sort of felt like I've been beaten with several bats plus very tired.

So this is day 17 and the prior two days I've been pretty energetic while today I'm back to feeling very tired.

The idea per the Rheumatologist was to build my bone density back up over the next two years and then to start IV Reclast one time a year to maintain the increased bone density.

Even tho we discussed my history of usually 3 ESIs/year since 2001 he did not recommend against getting more but just to continue with a conservative use but not a complete discontinuation.

Mostly I think I feel more tired since starting the injections but we'll see how things progress. I feel very fortunate at this time that I have insurance that covers the cost of the Forteo as it's really expensive!

[Kathy]

Phylly,
Glad to hear you are doing so well. I'm gone for 2 weeks, come back and so many have had surgery. Did the same surgeon that put in your discs remove them?
Praying for a speedy recovery,
Kathy

[phylly]

Maria, thanks for the info on forteo. I will start tomorrow so I will see how I do. I hope I don't get too tired and achy but there are side effects with everything I guess.

Kathy, A different Dr. took out my discs. I am hoping it works out well and so far it's been a bit better each day. Today I was tired and did not walk as much as yesterday but I will try again in the morning. You must be getting close to your surgery. I wish you the best.
Phylly

[mmglobal]

Hey phylly... I hope you are recovering nicely. Any chance you'll be out at the art walk tomorrow?

[phylly]

Mark,
I think the rain makes me hurt more or I am just doing more but today was not as good. I know there will be up and down days. I just don't like the down days and I hope it's not the Forteo. I don't think I am ready for the art walk yet but maybe in April. I'll try two shorter walks tomorrow instead of one long one. Pretty soon I need to get out of the house though. I may try to go to my knitting for a short while at the end of the week, I will see how tomorrow goes.
Phylly

[dshobbies]

Phylly,

I remember the 'old folks' complaining about the rhuematiz acting up in bad weather. Now I know what they were complaining about. Can't say if it's age or surgery but when it rains, I ache. It's the pressure, usually high in SoCal. When it falls, I can feel it. Obviously you can too. Don't worry about it.

Dale

[phylly]

Dale,
I thought that was an old wives tale but I guess not. This is the first time it coincided with the weather both rainy days. Today was gorgeous and I felt better and what a difference with the pain medication. I am glad that I don't live in Seattle, I would never get off drugs. I didn't know this had to do with low air pressure, interesting. You are a wealth of information. Thanks
Phylly

[Terry Allen Blackburn]

WOW Phylly. I am so happy for you, that you are moving in a forward direction. On the road to recovery at last. It must be a relief after such a long, hard road, that you have been down, to know that you are on the road now to recovery. Hopefully the lasting kind as well. I hope you continue to post so that we can hear the exciting news of your continued progress.

Terry Newton

[phylly]

Hi All,
Today is 4 weeks. I am not sure if I should post here or start a new thread since I am now minus my ADR's. Mark, what do you think? Most days are good but yesterday was sort of Blah and painful. We had a big weekend so Monday's are like that. Today seems better and I may go for a short drive. It could have to do with meds and trying to stretch the patch out for an extra half day. I am pretty motivated on cutting down the drugs but it is hard since I have depended on them for years.
For one month I am doing pretty well but I wish the recovery to move along faster. I am still on the Forteo and do not feel any side effects so far. I see an endocrinologist about it next week. I think that boredom is now setting in. I am well enough to look good but not really well enough to do too many activities and sit for long periods of time yet. The house is quiet. I should call friends to come and get me for an outing but I hate to be a burden or have to turn around and go back back home right away. I probably should be more dependent and let people come over and keep me company. I still feel glad I went through with this and pray that the pain I have is still surgical and not permanent. I will post again and let you know how I am doing.
Phylly

[Maria]

Phylly,
I like what you said about being able to look good ~ that's important! You do sound like you're recovering well for just a month surgery~ congrats on that!

I'm still a bit tired on the Forteo tho have completed nearly a month on it and the muscle aches went away pretty much so perhaps the tiredness is just me and I need to get a life!

take good care and continue on with getting stronger/better

[dshobbies]

Hang in there Phylly,

One month out is still pretty soon. I understand about the boredom, there's TV, books, phone calls but it gets old fast. And don't push yourself too hard, your body's been through a lot. Let it guide you, not the other way around.

Dale

[phylly]

Maria,
I do not think it is just your tiredness, i have been feeling some muscle tiredness and cramping/spasm since on Forteo especially in my legs. I'll let you know if it goes away. Walking seems to help it a bit. i have only been on it for 2 weeks so I'll see if it goes away by a month. Thanks for letting me know how you felt, not too many people are on it.
Phylly

[Kathy]

Phylly,
You sound like you are doing really good, for just 4 weeks out from surgery. If you are looking good, that is good. I always feel better if I feel like I look good, kinda lifts your spirits. I understand not wanting to be a burden; but trust me, your friends would be happy just to see you. Sometimes, my dear friend drags me and the kids to her house and if I don't feel good, we just let the kids play, while we lay in her bed on heating pads and talk. Or, I just have her come over and lay on the other couch, even if I don't feel like talking, it's nice to have some company every now and then. For the most part, my friends are very understanding and accomadating to my back pain (many have bought me my own heating pad for their house, that's a real friend!). They get it that sometimes, I just can't, we have to cancel plans, finish early or do something different. It took me awhile to let go and let people help me. I don't know how I would do it without them now. My friend came over today and cleaned my house, did my laundry and did the dishes. She comes and does that once or twice a week (and she has her own house, husband and 3 kids under 5 years). When I am better, I will be sure to pay it forward, as it has been a blessing to me and my family.

[mmglobal]

Let us know when you are up for a visit from some local spineys.

[phylly]

Let's wait a week or two and meet for coffee. It sounds like fun!

[Maria]

Phylly,
Some days I feel like I cannot get started.. I mean I feel dead tired even tho I've slept better than I've slept in years.

I was scheduled for a holter monitor and stress test (today/tomorrow) but my cousin is in intensive care in Santa Monica/UCLA so I want to be available to go there if needed.

Wouldn't you know my back is acting up since yesterday tho and I am sort of taking it easier than usual even...

I still have to get all my labs done re the Forteo which I've sort of shined on for a while as I seem to do about medical care in general unless pain management these days.

Ok, I don't see my Rheumatologist for at least another month and I've got to get the lab work done to make sure there's nothing off re all the values but I'm thinking these cramps/aches are just part of the territory with the medications/tiredness too but I don't feel this way every day just every couple of days now.

Hope it passes for you and me thanks as well for letting me know how u feel

[Cindylou]

Phylly, congrats on passing your four week mark. I think you should continue to post here, so newbies can see all different kinds of responses to this ADR surgery. The good, the bad, the ugly, if you will. I don't take Forteo, but Actinol, and have done really well on it. No side effects whatsoever. I think, overall, it sounds like you are coming along nicely. And good that you are walking some. I totally get the boredom thing. Here I sit at only 1 week post-op, and already, I look around and go, ok....what can I do now?? NOT MUCH is the answer, but I think, for me anyway, it's not having that good feeling of validation of being able to accomplish things, anything for that matter, that is frustrating. I am just not a very patient person, period. The house is trashed, I look like crap, the laundry is piled up still from LAST week, the bills are still sitting there that my husband promised he would do for a few months, and......you get the picture. I call my daughter-in-law every day to hear about the baby. I am pathetic. But, on the other hand, I do laugh at myself. And a sense of humor is critical at times like this. And my husband keeps me laughing too, which is incredible, when I think about everything he has had to endure the past 8 years. I have to continually tell myself: go with the flow; one day at a time; tomorrow is one more day of healing under my belt; never give up. The last is probably my biggest mantra. I am always so blown away by the stamina and stick to it-ness all we spiney's have. Pounding away at insurance denials, round the clock pain, never ending doctor's appt., searching for answers. I hope you have found your answer with this latest surgery, Phylly. Really great days are within your grasp. Keep hangin' on.

God Bless,

Cindy

[Terry Allen Blackburn]

Originally Posted by Cindylou

Phylly, congrats on passing your four week mark. I think you should continue to post here, so newbies can see all different kinds of responses to this ADR surgery. The good, the bad, the ugly, if you will. I don't take Forteo, but Actinol, and have done really well on it. No side effects whatsoever. I think, overall, it sounds like you are coming along nicely. And good that you are walking some. I totally get the boredom thing. Here I sit at only 1 week post-op, and already, I look around and go, ok....what can I do now?? NOT MUCH is the answer, but I think, for me anyway, it's not having that good feeling of validation of being able to accomplish things, anything for that matter, that is frustrating. I am just not a very patient person, period. The house is trashed, I look like crap, the laundry is piled up still from LAST week, the bills are still sitting there that my husband promised he would do for a few months, and......you get the picture. I call my daughter-in-law every day to hear about the baby. I am pathetic. But, on the other hand, I do laugh at myself. And a sense of humor is critical at times like this. And my husband keeps me laughing too, which is incredible, when I think about everything he has had to endure the past 8 years. I have to continually tell myself: go with the flow; one day at a time; tomorrow is one more day of healing under my belt; never give up. The last is probably my biggest mantra. I am always so blown away by the stamina and stick to it-ness all we spiney's have. Pounding away at insurance denials, round the clock pain, never ending doctor's appt., searching for answers. I hope you have found your answer with this latest surgery, Phylly. Really great days are within your grasp. Keep hangin' on.

God Bless,

Cindy

I too am always amazed at our resilience and ability to handle crap. It's like a test of personal character that gets thrown in our general direction to see if we are going to stand up or fold. What is the benefit in all this? I believe it makes us more compassionate towards others and able to be a support for the plight of other human beings. God can't be down here dealing with everything so he molds us to become what he wants us to be; caregivers for our fellow human in their trials and tribulations.

Glad to hear there is progress from Phylly and CindyLou. AWESOME!

Terry Newton

[phylly]

I love your mantras Cindylou and do feel like we can never give up but I had moments in the past year where I thought about it. Don't worry about getting things done in the house right now, your biggest job is to heal and get better. If you try to overdo you know what happens. I know that feeling of always being productive but now is not the time for that, you will have tons of time when you are feeling better. You will look back and this will be just another bump as Terry says. Plus you have an adorable new grand baby to cuddle and play with.

It is nice that you can laugh at yourself and your husband can laugh too. I need more of that, I think I am taking this recovery so seriously and do feel like a lost quite a few years with all these Spiney problems. I have reached a new low in productivity when I look forward to watching Judge Judy and Dr. Phil. I hope that Forteo has not made my brain too tired but likely it is the muscle relaxants. Today was a bit like that. I am now off to my walk and will catch up again. Don't be hard on yourself and TAKE IT EASY!
Phylly

[Justin]

Hi Phylly,

Just popping in your thread to say I hope you are doing well. You went through an extremely demanding surgery, and you were making great strides at recovery...I just wanted to make sure you were still headed down that path.

I wish you the very best.

[phylly]

Hi Justin,

I also just popped in and was catching up with everyone. I just passed my 8 week mark! I have many good days and then I get an off one now and then. Overall I can see progress because I am getting antsy about really cooking dinner and baking. My husband is so excited not to have take out. Today was absolutely gorgeous here in So. Calif. and I went down to the beach to do my walk. Keeping active seems to be the key although if I do too much I still get exhausted. I, like some other spineys have other issues so exercising sometimes makes my t-spine hurt. I have a weird T7-8 4cm bulge that presses on my cord when I walk too hard and I pulled a leg muscle last week so it has aggravated my back but it's much better today. I have to find out why lying on my back hurts. I wonder if it is the screw or hardware pressing in my muscles? The Princess and the Pea, is what my husband calls me. Getting my stamina back is definitely an ongoing process. I seem to need a lot of sleep. I wonder if it is the Forteo?

Wearing my brace is getting old and I feel ready to start weaning out of it. It's funny how your body tells you when to start doing things like that. It has been harder to wean off my fentynal patch and other meds. I wonder if I will always have a bit of back pain but time will tell. Sitting is better, I just have to remember to get up and walk around so I don't overdo. I have not been taking long drives yet but we want to go to the mountains in a week. I am going to wait until the last minute to decide. My mood has been much better so I am so thankful for my surgery and I look forward to a less painful life. ( I just may not be able to tie my shoes)

I am on Craigs list all the time looking for a perfect rescue dog for our home. I miss having a dog and I thought that walking it would help me. I may be crazy for wanting to have a dog or two; I guess it is that mothering instinct. I wouldn't have thought of wanting a dog a year ago so this is progress. Well you asked for it, this is my most up to date rambly post thus far.

I am always reading about you and hope that your surgery will go well and the date ill be here before you know it. You also need to be getting back to your life and career. Thank you so much for checking in with me, I have been bad about posting even though I try to keep up with everyone else's. I look forward to hearing more about you!
Phylly

[Kathy]

Phylly,

I am so glad that you are doing better. I am also tired all the time and not taking forteo. I think it is just our bodies working hard to heal. It is almost like when I was pregnant and was tired all the time, where I just HAD to sleep and couldn't fight it. That's how I feel and I know it's not pregnancy

I used to be a back sleeper; but since surgery I am more comfortable on my side. No pain or anything, just sleep better on my side.

Sounds like a beautiful day in CA. We had a beautiful day on Wednesday, spent some time with the kids outside. Thursday was super windy and wildfires everywhere to the West of here. All of the fires are 50+ miles from us, for now. Even being that far away, the sky is full of smoke and there was even soot on my car. We usually don't have wildfires here, an occassional field burns; but nothing like this.

Anyway, it was so good to hear from you and to know you are getting better!

God Bless,
Kathy

[fuzzy]

Congrats on your 8 week recovery. Do the docs think you still need the brace? I kicked mine in the corner after a week and then only used it on my walks but not at home. It made me hurt more then my back with out it!

[Cindylou]

Thanks for posting Phylly with an update. It definitely sounds like you are on the mend. I am so happy to hear this. I hope you can make the trip to the mountains. I made the 3 hour drive to our cabin last weekend and actually did really well. There was still ice on our lake, snow on the back deck, and a couple of dead mice to greet us. Lovely. Just listen to your body as I know you will. Hope it works out for you. The mountains sound lovely.

My best,

Cindylou

[dshobbies]

Phylly,

Sounds like you're doing great. It does take a long time to feel like yourself again and like my doctor said, 100% has a new meaning.

You might try the pennysaver for a dog. That's how we got Lucy. Why is her name Lucy? So when Julius comes home, he can say 'Lucy, I'm home'!

Keep up the good work. I would think you can wean off the brace after 8 weeks. What does your doctor tell you?

Take care, Dale

[treefrog]

How wonderful to hear that your recovery seems to be going so well Phylly.

I am not a dog person, much prefer cats. But I really like the idea of having a dog to walk, during recovery. Maybe I can volunteer for some of my neighbors.

[phylly]

Dale,
I got my wish and now also have a Lucy and a Leila rescued from Craigs list. They are beautiful half sisters, one is almost 2 and one is one something, half King Charles and half Lhaso. After being reassured that they were housebroken they have had a few accidents. It is not unexpected, what a trauma for them to be with ME but they are really sweet. They come and cuddle in bed; No more sleeping late for me. Since my husband is Ricky, the Lucy I am home works out great.

I have definitely got my sciatic nerve muscle pain back lately and this bending dog thing is not helping. I have every dog gadget made that prevents me from bending too far but I can't deep knee bend from the ground up. It's a killer. I am afraid I may have this pain for life. It also makes me think I still have a secondary issue. (piriformis?)I have had to increase my pain meds recently. I am hoping this is temporary and just a muscle pull/ inflammation and maybe I can go back on celebrex at some point. I will ask at my next visit.

I am going to figure out how to do stretches with two dogs licking my face and jumping on me, it's quite the scene. Luckily they are small. that's it for now. Back to the girls.
Phylly

[treefrog]

Oh, how nice Phylly. I hope you really enjoy them. My cats always got in the way when I was doing yoga. It was especially annoying when I would do a bridge, and one of them would crawl underneath my back and lie down on the mat.

I'm sorry that you are having sciatica again. Hopefully it is just temporary.

[phylly]

I was just wondering if the pain that returned while doing an unintentional deep knee bend to reach something on the floor is actually from the Rhizotomy wearing off? I had the Rhizo in December at 4 levels. My fusion was at two levels in Feb. It has now been 4 months. This is a really annoying pain which I thought was a piriformis muscle irritation. Now I wonder if the nerves are growing back and it has just been there. It started at the back of my leg in the joint and it felt like a tear and deep pain in the joint. Am I doing too much? Can't I do a little bending at two months? Does anyone have any ideas? I cannot believe it is coming from my back again although it does come up the side of the sacral area. Is this SI joint inflammation? I am not sure what to think it is????
Phylly

[treefrog]

I will let someone more knowledgeable reply.

But I wouldn't guess that it is the nerves from the rhizotomy growing back already (unless you have super fast growing nerves). It usually takes 9-12 months for nerves to grow back, and sometimes even up to 18 months. **This is only based on reading I have done. I am not a medical expert.

Sorry you are having some new pain Phylly. I hope it isn't your back. But, I'm sure you know that 2 months is still early in recovery, especially from fusion. And you are bound to have odd aches and pains. I suggest calling your doctor though, and see what they have to say. I hope you feel better soon.

[Kathy]

Phylly- Sorry you are hurting still, although 2 months is early in a fusion recovery. I hope the pain is just temporary and resolves soon.

I would love to see a picture of your new puppies! My friend just got Basset Hound Pups and they are so adorable. I make her bring them over a couple of times a week so I can cuddle them. My dog has been at the vet all week with surgery complications. I miss him and can't wait for him to be home again.

[phylly]

Okay,
Here are my adorable puppies, Leila and Lucy. I am really getting bonded but the poop accidents have to go. SOON! Just like little kids and i can't bend over. Maybe the grabbers will come in handy.
Phylly

[Kathy]

Ahh, they are so cute! I want to hold and cuddle them! I know the potty training sucks, but it will pass soon enough (not quick enough for you though, I'm sure ) I'm telling you, dogs are just about as much work as kids. Gotta feed em', get fresh water, let em' out, let em' in, out, in, puppy nap (hope they don't sleep too much and not sleep tonight) out, in, food, water, out, in, bed time. Start over tomorrow!! But, they are oh so worth it!

I'm so jealous, I would love to have cute puppies to sleep with. My big dog, Jack, is 90 lbs and thinks he is a kitten (maybe because he lives with 3 cats?) This means that he wants to jump on you, sit on your lap, etc. Ever watched Ice Age 2? Where the big girl mammoth was raised with the little, agile monkeys (not sure what they are). Anyhow, she thinks she is one of them, since she lived with them and saw them everyday and never sees herself, she even sleeps in a tree. This is exactly how my dog is. He is my big baby. I always joke that someone could break into my house, tie me up, and the dog would offer to help them load the tv if they would get him a milk bone! He's a very sweet boy and is awesome with my kids. Funny how they can get on your nerves so bad; but you love them so much.

[Gil Denis]

Hi Philly

Cute pups I am sure they will keep your mind off some of your pain.

Hope your recovery continues to get better

Kathy Ice age 2 we love that move do you mean the Possoms

All take care GB

Gil

[sand52]

Dear Phylly,

I would take it a little easier and maybe take a few more meds. I know I want to get off the meds but you have gone through something nobody else has and it takes a long time for that to heal. Especially if you are a little older. Ask the doctor what you can do physically at this EARLY stage of your recovery.

All the best!

[phylly]

Hi Sand,
I did move up my Dr. appointment and I will try to take it easy as I think I have been overdoing everything. My PM doctor is cutting my meds, I hate that. I wish they would let me decide when to cut. I do have a small stash thank goodness. Something seems a bit messed up but I hope it is temporary. My husband thinks I am now okay (maybe not) because I had felt better and I guess the expectation to get on with my life is there. I am now on an ice-pack. Thanks for the concern, usually when I rest it does feel better so I am going to work on that.

My puppy walks may have been too ambitious for now. My doctor has said do what I can and I will know but that may have been too vague. He said simple stretching, walking etc. It is hard to believe that I was walking pain free a few weeks ago and cooking dinner and now have this buttock and leg pain again. Older sucks. I just passed the big 60! Isn't that the new 50?
Thank you again for my reality check,
Phylly

[treefrog]

Awww, Phylly. Your pups are so cute. I am a cat person, but I do appreciate cuteness, in all it's forms.

Sorry you are having more pain. I hope the Dr. can alleviate your fears and the pain. Take it easy, rest more.

[Maria]

Might be coincidental re timing of rhizo wearing off and then the recent increased activity with the pups.. I say this only because Lola can bring on a whole wave of pain stuff in all kinds of places on my body!

Have you tried any muscle relaxers just in case you're having muscle spasms that are coming along with some of your other symptoms? Just in thinking that your increased activity could also be creating some spasming and thus maybe something like a Toradol shot and/or some oral muscle relaxers might be helpful or take the edge off at least.

Decreasing your meds on a schedule that is not of your own seems over zealous to me but then again I guess i's ok altho if pain levels increase significantly I'd impress that upon your doc that you may not be ready to be taken done quite so quickly while recovering.

If you mention the new puppies actiivity surely you'll be told that's you're having more pain and to be careful but you already know that.. you just need something to help with relief and/or to be very careful with taking care of the pups.. again you know this too!

adaptive equipment for poop scooping and also something that doesn't allow Lola to yank me about (feels like she's pulling me around by a collar around my neck)!!!!

[phylly]

Maria,
I agree, those pups do pull and I am trying to get a handle on this. I am sure that you are correct about the extra activity etc. I may have to take one at a time to avoid pulling on the leash. I am going in to see my Dr. a few weeks earlier to see what he says about the pain. I am hoping it is just a slight setback which will respond to rest, ice, and muscle relaxers. I want to go back on celebrex. I do have all these great pooper scoopers, etc. The pups make me laugh although not my husband when he cleans the accidents. He is being a good sport about this. Our trainer comes tomorrow and we have accomplished getting the dogs through the dog door for the pee part. Somebody still like the carpet by the speakers.

I did want to ask you about the Forteo. I have now been on it for 2 months. I am not as tired as I was but still feel more tired than before I started it. How are you? Are you still on it? I would like to stay on it for now. Let me know how you are doing.
Phylly

[Maria]

Phylly,
I went thru such a long period of feeling almost dead tired and I'm sure this feeling was related to the forteo.. I also noticed that if I missed a day which I have once or twice that I was very exhausted (my imagination? I think not)... but anyway I seem to be on the upswing now and feeling more enegetic.

I just started working out a bit which I think might be killing my low back a tad but at least I feel like I have more energy. We'll see if I can balance working out and not getting an aggravated back as it does give me more energy.

My doctor told me I needed to do aerobic exercise.. (hello.. does she even remember who she's speaking to in terms of all my bodily aches and pains?)

Bottom line: I started Forteo Feb.10 and I think I am starting to feel better now so I'll keep you posted. Hope you will be feeling less tired as well ~

[phylly]

Hi All,

About three weeks ago, right before acquiring my dogs, I was becoming more active and using my leg muscles to bend. Well one day I bent down a bit too much and really needed to push up. I have never been the same! My sciatic pain started to come back as well as pain when sitting. It is the spot mid butt which seems to radiate into my low back (sacrum) during the day and into the back of my leg. It is the same pain that was not concordant on my discogram. I am so very bummed. (to be continued)

Then the dog puppies came and were so very sweet until they started fighting. Actually the younger one wanted to be the top dog and was killing the other one. Stupidly both my husband and I were bitten at different times but during the last horrible fight he ended up in the ER with 10 stitches on his finger. We were traumatized and after spending tons of money, hiring a trainer, cleaning up accidents, ruining the lawn , and then finally having to clean the blood out of the carpets, we were emotionally done. WE gave it 3 weeks and the dogs went back to their original owner. So NO more puppies for awhile. I guess I took on too much and we were also physically exhausted.

(Continued) I moved up my doctor appointment because of the pain. We are leaving for graduation trips in three weeks. He is amazing and is sending me for new MRI's of my pelvis and hips. He has sent me to another Dr. for EMG's and possible shot in the piriformis or muscle that may be clamping down on my sciatic nerve. He is disappointed as am I but he is not going to give up yet. I am still hoping that we can find the source of the pain in that dark black box. I will keep you posted. He does not think it is SI joint or a thousand other things I had on my list. At least the other back pain is better so it is easier to deal with the butt and leg although by the end of the day it is quite painful and affects me a lot. I wonder if it is my fault from using those muscle too soon? He did not say this. My tests are moving along at warp speed which is amazing and the office has arranged all the Dr. appointments also. After all the dragging along these past years I am amazed at how his response has been. It is wonderful. I will keep you all posted and am hoping we can find this other source of pain. What kills me it is the same pain I originally had after my fall in 4/05 when i broke my tailbone and no one had ever found the cause. So for 4 years, more epidurals and caudal and nerve blocks than I can count, and 3 back surgeries, I still have the same original pain. I knew I had multiple issues so maybe with the back taken care of I can go forward and find this.

I guess I was hoping that this would be my last surgery and still hope that. There is always a piriformis release which he says is a lot easier after what I have been through but it may not work, and there is always that dreaded SCS which I really don't want. So this is the latest most up to date news.

Phylly

[phylly]

Forgive the spelling error in heading.
BTW, I am open to any suggestions regarding my pain to ask this new Dr. on Tuesday. Like Why, Where, and What to do now?

[Kathy]

Phylly,
I'm sorry that you are having a bump in the road. Hopefully, it is just that, a bump in the road and you will feel better soon. It does sound like the puppies were too much, so your body may just still be worked up from that. I puppy sat my nephews puppy yesterday, they are a ton of work (up, down, take them out, let them in, feed them, clean up accidents, play with them, up, down, and all over again). I was tired and I only had the dog for 8 hours! I know it is disheartening having a setback, you feel like you will never be better and it's depressing. This recovery takes way longer than we would like and you are only 2 months post op. Don't you wish you could just wake up from surgery and pop out of bed and be healed? Wouldn't that be nice. I'm not patient, so this has seemed like a horribly long time to me. I spoke with the research department lady yesterday and she said that she hears this all the time and that in a year, I will look back and hardly remember the setbacks. I'll be praying for you and a stellar recovery, Kathy

[dshobbies]

Phylly,

How lucky for you that your doctor cares so much. Most of the stories we hear involve long waits. Your circumstances could be better but your doctor sounds top notch

Good luck to you, Dale

[treefrog]

Phylly, I'm so sorry that you are having this bump in the road, but as Kathy said, I hope it is just a bump and that you will be back to feeling better soon.

But it must feel wonderful to have this doctor who is really trying to help you. And making sure that things don't take forever and a day to get done. I'm sure he understands that you have been in pain for far too long, and don't want to wait weeks to have tests done, that you want answers as quickly as possible.

I really hope that you are able to find out what is going on, and that something can be done, soon.

[phylly]

Just got back from a really long trip for me-two weeks. Went to son's graduation in Ithaca and then London to see other son. We did tons of walking and EATING. I survived all the sitting and will take it easy this weekend. I have not decreased any pain meds but I will try now that I am home. I think at almost 4 months post fusion I hoped for less pain but I am so tolerant to all the pain meds that decreasing is going to be tough for me. I was happy I could go though, something I could never do before the surgery. Just wanted to say hello to everyone and will try to catch up on posts. I did not have email while away. I can see there have been lots of surgeries and news from all.
Phylly

[mmglobal]

Phylly... I'm so sorry that you are back in the 'game' again. I've been delinquent on the forum too as I've been dealing with a lot myself (4-level cervical/thoracic ADR 8 weeks ago) and am just starting to catch up.

Were any of the tests determinative?

All the best,

Mark

[cls]

Phylly,

Although you are still having some pain issues, I think it is good news that you were able to do so much traveling. I'm not sure that I would be able to make the flight to London! Hang in there.