Surgery scheduled - sooooo many concerns

[titaniumed]

Ed, I nearly lost my coffee when I saw that pic. Holy dooly! Hahaha! You said Yes" to that?

Funny how I will post something bizarre and get no response....That’s how I know its good. LOL
Now how could I say no? I guess the law is the law.

Congratulations Rise, slow and easy now.....My first 6 weeks were basically a “survival mode” where every single moment was trying to get comfortable.This is the hard part of it all, and it will pass in time. These surgeries teach patience for sure. Improvement seems to come in staged events. After 4 weeks suddenly I felt around 10-20% better.

Remember, No bending, no, lifting, no twisting, and no falling allowed.

Medication management can be tricky in the early stages....keep notes in a notebook of all meds, BM’s, walks, food etc....

Reduction without withdrawing can be done at 20% per week.....Constipation seems to be the hardest thing, this has to be managed carefully. Warm prune juice seems to be the favorite, and having a bottle or 2 of Magnesium citrate is good to have “just in case”.

Ed

[leahdragonfly]

Is there any such thing as an up eventful recovery? I sure hope so. I think I prematurely tried to cut back on pain meds and boy did I pay the price! It's catch 22. I hate taking the meds because of how they mess with my head but the pain becomes draining and unbearable.

Is this normal? Where should I be at 12 days post op? I still feel so helpless and vulnerable. I've showered and washed and blow dried my hair (with my husbands help) a few times now and getting in and out of bed is fairly easy BUT I feel limited in my movements and am getting very inpatient. Any advice? Risë

Hi Rise,

You sound so very much like me (and I had a similar length fusion, T8-sacrum), I recognize myself in your post!!! I know you feel impatient now, but my friend you have a LOOONG way to go, so please settle in to recovery and don't try to push yourself so much. There is absolutely no way to rush this recovery, period. I thought I could be tough and suck it up to hurry things along, but it just doesn't work like that. You have to allow your spine to heal thoroughly, because you only have one chance to do it right. Believe me, I went through a major revision at 15 months post-op for broken rods and it wasn't any fun at all. Please take it easy and let your body heal. It takes a long time, but it will happen in time. This recovery is like recovering from being hit by a speeding 18-wheel truck.

At this point you can of course shower, and take 2-3 short walks per day (5-10 minutes each), move around the house, and watch lots of TV. You need to lay down when you are tired, eat very nutritious meals, and most importantly you need solid pain control. It is way too soon to try and go off pain meds. Keep in touch with friends to keep your spirits up.

Please hang in there, and accept this advice as the loving concern that it is from someone who has been there twice. You will feel better in stages. For me it was 12 days, then 2 weeks, 4 weeks, 8 weeks, etc. You will hit many plateaus where you will be discouraged, or even have set-backs, we all do. Significant "aches and pains" persist for many months, as well as fatigue and even feeling foggy in the head. I felt "recovered" by 6 months, but continued to make many improvements at one year and even after 2 years. I am now a few months past 2 years and have regained a lot of mobility and lost a lot of fear since the 2 year mark. I even survived falling down an entire flight of stairs on my back without breaking anything!

Take care, please let us know how you are doing as things go along.

[Irina]

I will second what everyone one else said - take it easy. One way to help you be patient is to look at this long recovery as your only chance in life to take care of YOU and not everyone around you. You don't have to take care of kids, husband, dogs, house. It's your chance to slow down and forget about work and any stress. Find some series on Netflix or browse online clothing stores. Just don't buy anything while you are heavily medicated :-) Online shopping kept me entertained for a long time!

[Rise]

Recovery

Hi Everyone,

I really don't mean to sound ungrateful for what I suppose is going relatively well. It's just such a frustrating and frightening process. Like nothing else I've ever done. I ran from this surgery for 35 years always saying that once done, it could NEVER be undone. No " oops, I made a mistake let me go back."

Now, the weird sensations, the incredible itchiness and numbness (to the point of pain?) the naseau, the " I think this is an improvement" followed by " but I thought I was improving, what happened?" all have me twisted.

I can't help but wonder - when do you know, really know it's going to be ok? I guess I'm just scared.

Risë

[titaniumed]

Rise, don’t ever look back, always look forward and think about how well you will be doing in the future. It will get better.....

Right now you have to hang in there and be strong. We know it isn’t easy, but that’s what we have to do.

Think positively, and try not to worry. The first few weeks are tough for sure.....

The itchiness and numbness will take months to go away....it goes away slowly.

When do you know its going to be ok? You know this now, its going to be ok, patience!

Learn to take deep breaths.....Breathe in deep and hard, hold for a tad then exhale completely. Repeat for anxiety. Go for short walks often through the day.

Hang in there

Ed

[tae_tap]

Rise,
We all were terrified of the entire process too. The waiting game is the worse because it gives you time to think of every negative thought or outcome. A big part to over-coming this is to remain positive and to let all the bad energy disappear. If you have been running then you obviously know what you need to do, so it is time to just hop on that roller coaster and buckle up. At the end of the ride (even if you felt your stomach in your throat) will be glad you did not go down the chicken escape. Keep your head up!
Tamena

[the_baroness]

Itchiness and numbness

Rise - I had itchiness and numbness too. At the time I described it as "fire ants biting me all over on my back." My surgeon's nurse Oksoon said it was all the nerve endings that were cut coming back alive and starting to regenerate themselves. It was highly unpleasant, so she put me on Neurontin (actually, the generic form, Gabapentin.) That did the trick and the fire ants went away. But I have to stress, I'm really not sure I recommend taking this medication. It affected my vision, and made everything blurry, and my husband tells me it made me even loopier than the oxycontin. And on top of that, and worst of all, it was extremely difficult to get off of. I had severe, nightmarish withdrawal symptons. It's some strong stuff. Although it was really very effective during a time when I needed it, and I really didn't need nice clear vision and clear mind during that time anyhow! If you end up taking it, just be careful about how you taper off.

For many months the lower right quadrant of my back had no feeling whatsoever. But that seems to have gone away now. Occasionally a bout of itchiness comes back randomly and unexpectedly. I always think maybe that's when a big round of healing has started up inside there again.

You said your surgery was with Dr. Boachie at HSS? Are you in NYC? I often think it might be nice to get a little NYC scoliosis and scoli surgery support group going. Although I say that now while I'm just barely over the cusp of having enough energy to function normally, so adding something else into my schedule probably isn't such a great idea! But everyone on this list is so great, I think it might be nice to meet up in person one of these days. I met a man out the other night who had a few levels fused with instrumentation, and it was so nice to actually talk in person to another human being who has gone through this.

Anywho, best of luck. Use this time to rest. I didn't listen to everyone's advice and I didn't rest enough, and I think it impeded my recovery for a while. So rest up! I'm wishing you good health and a good recovery.

[golfnut]

Many have already given great advice. I think when I was in the recovery mode, everything was such a "baby step" that I almost felt I wasn't improving at all. Actually, I was making gains, but it was so slow that I didn't notice. This surgery takes a ton of patience and the improvements in flexibility and fewer aches can occur even after your 1st and 2nd year anniversaries. Be proud that you had the courage to have this surgery and keep walking!

[Irina]

Hi Rise,

You are so early in your recovery - I felt like s...t first month. I remember feeling significantly better at about 6 Weeks, so don't panic - it will get better. Take pain killers and don't try to cut it down yet. You will taper off when time comes, but right now no need to be a hero. Hang in here.

[scooter950]

Oh Rise, your words echo my thoughts "once this is done, it can't be undone" but... you are in control. Your body was not going to get better, now- a skilled surgeon has corrected your curvature- wow. One of the best if not THE best! all you should do now is rest, eat, drink and walk a little. i'm amazed tht you are posting so much, so soon. tell me- how swollen was your face>? did your family tell you? I am worried about scaring my husband when he sees me post-op. It's great to hear about your progress, don't doubt anymore. baby steps towards improvement every day! God bless you ~ Jamie in TX

[Irina]

Hi Jamie,

It's not Rise, but I wanted to answer your question - my face was not swollen, may be a tiny bit. I even asked my husband to take my picture when he first saw me and I had a big smile on my face - yey! it's over! You will have many tubes sticking out of you though.

My husband said that he was surprised by how lucent and coherent I was, but I did have hallucinations. I understood that these were hallucinations and told a doctor abut it. First day or two I saw very bright pictures of flowers, most often lavender fields... very bright and beautiful. I also had sound hallucinations - it seemed to me that I heard mumbled Russian speach. I could not make the words, but it sounded like news at very low volume. At first I looked around thinking it's my dad speaking, but he was not in the room... my husband was there, but he is an American. I stared at tv thinking it's news on tv, then, after some time thought...wait a minute...I am in an American hospital, why would tv speak Russian? I actually clearly remember my brain trying to figure out what's going on and slowly I understood that I was hallucinating...

[mabeckoff]

I had plenty of hallucinations as well.I thought that I was back in NJ and my surgeons came every morning from CA to visit me. I ,also, thought that the air conditioning duct work was a a water park and I was mad that my husband would not take me there

Drugs are great

[Rise]

Post op swelling

Hi Jamie,

Yes, my husband and sister told me my face was swollen when they first saw me. It was pretty bad BUT was gone almost entirely by the next day. Personally, I noticed that my hands/fingers were very swollen for a few days post op but this also disappeared. I really think they keep you so hydrated with iv fluids that this swelling is normal. Believe me, this is the least of it.

I'm actually surprised at how lucid I've been since coming home. I actually feel mentally and physically strong. As I've said, my gym workouts were a huge positive. Without them I think I'd be a mess. I can't stress this enough.

My biggest issue is the nagging, excruciating and annoying down to your soul nerve pain/discomfort. It's like nothing you can imagine or describe and it sucks the life out of you. Imagining a day when I can wake up without it is so very hard and that's where my latest fears come in. Will my nerves heal???? And WHEN???

Risë

[JenniferG]

My face was very swollen. So much so, that I couldn't open my eyes until the next morning. I'm glad there are no photos....

[Rise]

Question/frustration

Hi all,

Well I'm three weeks post op tomorrow and right now one of my biggest complaints is the stiffness. It is virtually impossible for me to shave my legs below my thighs or to even put lotion on. Does this get better? I'm fused to the sacrum and I'm hoping that this is just a tight stage but I fear this may just be how it is going to be. Sacrum people - what's in store for me?

Risë