God Grant me the courage....

[scooter950]

Greetings to all, I haven't posted in a while, I have been planning scoli surgery but always postponed it.
Well I just saw my ortho doc yesterday, many tears=- the reality of this surgery frightens me, but ... it's not going away and it's not geting better.

My doc wants to do a laminectomy on my neck; I have cervical stenosis and an impinged cord, he doesn't want to fuse my neck tho' ... he just did a paper on the post-op complications of scoli surgery, and he said he believes in addressing neck issues before scoli surgery. and I have a lot of neck pain.

altho' I won't be fused, the laminectomy will open up the spinal canal. He feels that the manipulation of scoli correction often increases cervical pressure- leading to cervical complications, either on the operating room table or post-op. As many of you experience, post-op. It's a blessing that he was already researching this issue.

So I am going to prepare for cervical laminectomy, not fusion- recover, and then schedule scoli surgery, T2 thru L4 he wants to preserve L4- L5 as long as possible.

He said my arthritis stopped at L3/L4.

So i am praying for courage. I have knowledge, I have medical insurance, but I am a chicken. I fear the pain, I fear the constipation, I fear living WITHOUT NSAIDs OMGosh! I live on Motrin around the clock! better than morphine! the thought of being without motrin frightens me...

I hope that by having the laminectomy first- I will become familiar with the hospital, familiar with the travel ( 5 hrs. away from home) and then feel less anxious with the scoli surgery.

I have to make a decision, I'm 53yrs old and while my curves are stable, the stenosis and arthritc changes are increasing the pain. I've learned so much from everyone's posts - I am a lurker, usually, for years now, I rememebr when people died, you just miss their posts, and I have seen people recover and drop off the forum ( hopefully because they have a full active life).

Hopefully, I will continue to lurk for many years to come.... thank you for sharing your experiences, I have a lot to do... Jamie in Texas

[chmesh]

Hi Jamie,

I had my surgery on June 29th after many years of worrying. I read posts on here and asked lots of questions and thought about it so much I drove myself a little nutty.

I had a different surgery than you will have but they are all scary! I finally decided to do it and 2 months later I'm happy I did! I know I'm still in the healing phase for sure, but I've made so much progress!

A hard part for me was the day of the surgery when I was lying on the bed and listening to the anesthesiologist and surgeon. Istarted to cry. My mom and husband were there and told me I didn't have to go through with it, but I told them I wanted to, and I asked the doctor for a cocktail to make me forget my worries

I was in ICU for 24 hrs and then moved to a regular room. I had a really rough time with the pain meds. I was in the hospital for 8 days total but I was discharged and had to be readmitted because of the pain meds. They made me very nauseous and as a result weak and dehydrated. Those 8 days went by somewhat quickly but they were hard. I was just uncomfortable. The nurses really helped though! For me, I turned a corner when I was on only Tylenol. I used this after the 8 days and was on an every 4hr dose of extra strength. So needless to say, I was still uncomfortable at home. I had a breakdown because no chair or bed felt good to me. Finally a memory foam topper gave me some peace. But really around the 2-3 week mark after surgery I felt really good. I was walking and gaining strength.

So yes I was scared but I did it and you can too! If that's what you really want I say if you're going to eventually need it then do it. It's not as bad as you think....in my opinion.

I had a 48 degree curve and a 40 degree curve that were both progressing after being braced as a teen. I was fused from T2-L1 and now my curves are in the teens.

Take care, Christina

[GOE]

Hello Jamie -
I have been a lurker like you but I saw your post and totally saw myself in thesame spot you were only about a year ago and wanted to send encouraging thoughts your way.
No one could have been more scared of surgery like I was and I mean that as plainly as can be said. I had double major curves (84 and 87) that were progressing albeit slowly. I was 34 (just turned 35) with such huge and progressing curves so what that meant as Dr Boachie put it "it was a ticking time bomb". I would have to get surgery eventually.
Like you I went through a roller coaster of emotions for a full year (tears, anxiety, worry, anger, denial) and did soooo much research and analysis that everyone around me thought I was crazy. I probably read every thread on this forum and like you saw pple, who just stopped posting and I wondered what happened to them and others who have been such a source of strenght and encouragement with their experiences (good and bad). The only thing that helped me wrap my hands around it was when my mum referred me to the serenity prayer. It was something I had to do and so I prayed for the exact same thing as you , courage and peace to go through with it.
I had my surgery on June 21 at HSS with Dr Boachie, was in the PACU for one night and sent up to the floors the next day. I honestly cannot remember being in excruciating pain from my back but had an ileus which was quite painful. The ileus was terrible !!! By day 5 I was sooo uncomfortable and had sooo much pain from all the gas in my stomach that I cried uncontrollably. They put in a GI tube to decompress my stomach and after 24 hrs when that did not seem to be working either they sent me back down to PACU and had to give me a strong IV injection that got things moving. I spent a total of 10 days at HSS. When I got home I was in a lot of pain and things were rough but I began to feel somewhat better at about 3 weeks. I am now 10 weeks post op and still have bad nerve pain in my right leg that the doctor says should resolve with time.
In summary, it was the hardest thing I have ever had to do and the recovery hasn't been a walk in the park but here's the encouraging part - it wasn't as bad as I had imagined it and even with the pain I have right now I am glad I took care of it now.

This forum has been such a blessing to me so I am sure you will get support from here whatever you decide. You will be in my thoughts and prayers.

[Kayde]

I think anyone who reads the posts on this forum has been afraid deep in the soul since the first time we realized our bones were closing in on us. God has to grant us courage everyday to get up and live with this and it is hard to describe to others. Unless you have this or a similar issue nobody can truly understand. And it seems you are alone with the problem God grants the surgeons the wisdom to help us. I bought 35 years of technology and I am scheduled for correction next month I don't regret not having the surgery before but I pray each day for the courage to go through with it. We will keep you in our prayers.

[golfnut]

Making the decision to have surgery takes a lot of courage. I have to agree with the other posts that the time before surgery was far worse than the recovery. Prior to surgery, I couldn't even imagine what it would feel like to be in excrutiating pain. Much to my surprise, I never experienced extreme pain. I also had a ton of "what ifs" going through my head each and every day for 13 months while waiting for surgery. While I had abdomen pain from constipation for several weeks after the surgery, my back pain was minimal. Since we don't have a crystal ball, we just have to hope and pray that the decision for surgery gives us the best future for an active life. I am now 8 months post-op and have fortunately had a smooth recovery so far and have never looked back. I am totally happy that I had the surgery.

[backissues]

I understand where you are all coming from. Pre-surgery is a very difficult time and maybe worse than post-surgery.

I had pain for 20-25 years until surgery was the only answer besides living with the pain and looking forward to a walker. At 65, I went for the surgery and I am very glad. This summer has been a new life for me where I can walk without pain and stand without pain. That's not to say there haven't been "bumps" along the way and there is still some discomfort but it is different and I look forward to it diminishing and going away. I am no longer defined by my pain.

All you have to do on the day of the surgery is "show up." Then, it is up to the surgeon and the surgical team to do the rest. Choose carefully so you are in the hands of people who you can trust. Do the research and get your questions answered so you are at peace with yourself. The rest is up to G-d.

Good luck!

[titaniumed]

Hi Jamie

Be sure to let us know what you decide....we totally understand your fears. There are times when you have to let go and trust. You know who to trust....ask and you will receive.

Christina, Goe, Irene and Karen
Its great to read your post’s....

I think anyone who reads the posts on this forum has been afraid deep in the soul since the first time we realized our bones were closing in on us. God has to grant us courage everyday to get up and live with this

Post of the month...You hit this right on the bell.

Ed

[JenniferG]

We certainly do know about fear. When I first came to this forum, I found everyone talking so matter-of-factly and knowledgably about surgery and I marvelled at how brave everyone was, who faced "this thing," as I called it. I asked questions, wanting the good, the bad and the ugly and that's what I got. But it helped enormously. Knowing what to expect, so there weren't question marks in my head, helped a lot. That time was harder for me, than post op.

Today I bumped into an old friend I hadn't seen in 3 years. She immediately checked my shoes and said, "I thought you were wearing high-heels." No, I grew 2 inches. I told her the story and she marvelled at what I'd been through and how well I am now. She said I was very brave to undergo such surgery. Brave? Oh no, not brave at all.

Initially, I had pharmaceutical help with my anxiety and that was a blessing. Then, a few months out from surgery, I set out to get fit. Fit for surgery. I got very fit and along with my growing fitness, my pain and anxiety diminished. I cannot explain how, but it really got me through that pre-op time. The fitter I got, the more I knew I could do "this thing" and get through it well. I always suggest getting fit to those facing surgery, if their pain allows. It really made a huge difference to how I viewed the surgery. Not everyone can excercise, but for those who can, it has this huge payoff.

Wishing you the very best on this difficult road.

[Doodles]

I can identify with all of the above! Also just wanted to add to Jennifer's idea about the exercise. It's hard to know if it would have been different without it, but I have to feel it helps. I always exercised just to help keep the pain at bay somewhat before surgery but I increased it after talking with someone who had had the surgery & suggested it. Yes, being as fit as possible is a good way to go into surgery and it does help the anxiety! Janet

[braceyourself]

I probably won't post much at all now that I'm back at college, but I'm still reading everything. This got my attention, though.

I have to agree on the exercise issue in that, from personal experience, I believe it's very beneficial. It's hard to imagine myself trying to sit down and stand up with poor leg muscles and all that. But several of my nurses actually said that strengthening the back muscles makes it a more painful recovery (by how much?). The summer before my surgery, I went to PT to strengthen my back muscles, hoping to prevent surgery, and they said that if I had a lot of fat on my back, it would have been much "easier" (as if the word "easy" really belongs in this context). : )

If I had to describe the pre-surgery feeling, I would probably just have to say it was plain weird. I've never experienced anything quite like it (especially having never had a surgery before). In a very different way, yes, it was much worse than post-op. But by the way we handle our emotions and everything before surgery (and esp. after surgery), we can be a tremendous encouragement and help to others who see us. I realized very soon that people around me were really watching how I handled everything. And I have to say along with you all, that I respect every person who has gone through this, especially those who turn it around and use it for good, like all of you.

I don't have time to proofread, so I hope everything made sense. And I hope you could not be happier with the decisions you make!

[djkinkead]

It's been ten days post surgery for me now, so what I went through pre surgery is still very fresh.

I was so worried sick, but finally realized God was in charge and every time someone who wanted to destroy our faith in Him that can do all things, sure did his best. I then truly claimed the promise to talk to God every time the anxiety hit and it did bring much peace to my soul,

The surgeon and hospital I selected had a dedicated spinal surgery wing, so they knew what to do regarding pain.

An interesting side note is that when I escaped the rehab place, I switched my pain medicine which seems to be easier than the original oxycodone. The new stuff, hydrocodone, manages the pain as well, but I haven' had to doll the softener stuff hardly at all.

Sayin prayers for you!

[scooter950]

Oh WOW thank you all for your kind responses! I really thought maybe someone would reply to share their neck pain, or to discuss Dr Geck's decision to address the neck pain pre-op. I did not expect all this support for my fears- but I am so grateful,especially for the advice about exercise! I really truly want to start some exercise program. As some of you shared, (Jennifer, Janice & Katie) feeling fit helped - and I think it will, too- I am out of shape, I am sedentary, I have to schedule my pre-op cardiac eval & stress test, but I intend to increase my walking, and use the glider indoors. I think i'm the "fattest" person who posts here, from looking at everyone's photo- you're all so thin! I'm 5'9" but I pack a lot of pounds ... so I want to lose weight pre-op too.

Thank you for telling me about your pre-op AND POST-op experiences, I am so afraid but I will have to trust in God. I guess my biggest fear is waking up in pain, in ICU, intubated, and unable to ask for help. I need to realize that God is always in control, and just move forward. Sometimes too much knowledge creates anxieties. Backissues, I know your journey isn't over yet, my prayers are with you. TiEd, you always have such a sense of humor, I enjoy reading all ur posts, and I am amazed by your degree of flexibility! Karen -goler, I've been amazed by how well you felt so soon after your surgery! May you all continue to recover without complications. To all of you, thank you, i don't mean to forget anyone, I really find comfort in hearing how you each survived the surgery, and I value your advice. Besides, it's vanity ( a small part) but like Jennifer- I want to stand my true height, I want to be straight and tall! Oh and yes, it will feel so good emotionally to know this is behind me.... thank you to all for sharing and for your kind words of support! God bless -- Jamie

[mabeckoff]

Hello,

Once you make up your mind to go thru with the surgery , you will know that it is the correct thing to do.The things that you list are small things compared to the surgery and the way you will feel afterwards. Not directly afterwards but months down the road you will feel better and have a better quality of life. I am 6 weeks post op from my 15 hour surgery and yes I am feeling better. I have decided to put my trust in God about my September 9th surgery and as long as I keep my thoughts focused on him, I feel good about that surgery. The last two weeks prior to my July surgery I felt wonderful about my decision to go forward with that surgery . I feel so good , most of the time and every day I can so slightly more that I could the day before

God bless

Melissa

[djkinkead]

I distinctly remember waking up, being in a lot of pain and stating rather adamently this was my condition. They gave me morphene and things were better controlled better with lesser "wild" drugs.

I strongly suggest a hospital that has either a really strong track record in successful spine surgery--and, like Mercy Hospital that I went to, had a dedicated wing for spinal surgery.

They certainly have been around the block.

God bless!

[Susie*Bee]

I echo what the others have said too. You can do it, and we are here to encourage you. One of the things I was afraid of was that I had to "give up" my arthritis medicine (voltaren) ahead of time and then do without it for 6 months afterward because it is an NSAID. I managed ok. Going into the surgery, I handed everything over to the Lord for whatever was to happen, and felt at peace about it as I was rolled away. The best defense is to be educated as to what is to happen, to have an excellent surgeon and hospital that you trust, and (in my opinion) to have a faith that will help you through it all. Oh -- and to also have a support system of at least one person who will be able to help you, if at all possible, although there have been a few who have done it on their own.

Remember, we are always there to help you when you are afraid or are down about things. Or need a little bit of encouragement or have questions. Take care!