Crystal's Surgery Journey....

[hdsluckygirl13]

My X-rays and Image Results

I figure that some of you may want to see my beautiful curves, though they are in the wrong place on my body. lol Trying to find some humor... Thank you Ed, as I read your instructions on how to add an attachment to do this =)

jan 7 2014 lower curve.jpg
jan 7 2014 upper curve.jpg
Jan 7 2014 Scoliosis Results.pdf
CT SPINE THOR 10 17 2014.pdf
jan 7 2014.jpg

[hdsluckygirl13]

You are such an inspiration to me!

Crystal, welcome!

Dr. Hart is just doing his job checking with your therapist. Don't get wigged out about him checking. He just wants to make sure that you will not have anything in the way of your recovery. He may send you to Dr. Carlson who is a psychologist on staff. He is an expert in "mindfulness". He is a very gentle man and I think that you will like him.....if he sends you, that is!

Congratulations on making the next step to better health and less pain.

Susan

PS: I liked Dr. Hart a lot and think that he will take great care of you!

I finally caught up and finished reading your entire thread. Let me just say that I admire your strength. I also appreciate that you have shared your journey with its ups and downs (that is putting it lightly, I know) with this forum. Just beginning mine, it just really helps to have someone like you share yours with us all. I also really appreciate your thoughts. Big hugs, please keep in touch.

[hdsluckygirl13]

So true...

Crystal

Just wanted to welcome you to the forum....

If you have read my posts, you know that I’m single and did my recovery alone as did a few members here....Basically, I had all sorts of friends and neighbors and nurses coming over to my house every day, but scoliosis surgical recovery is all about YOU and not what anyone else is going to do for you.....I would say that this is 99% true because other than any mental or emotional support, there is not much anyone can do for you if you are in pain....We learn to adapt and think positive in our recoveries and this is extremely important while we heal. Having faith plays a crucial role. I knew that things were going to be alright from the start.....I just knew.

It’s a time when we have to be strong, stay the course, know what’s happening to our bodies, and be patient. We are not allowed to bend, twist or lift for many many months, and we learn to cope without having others around because they might not be around every time something needs to be lifted up off the floor, or every time we want to eat. In other words, being self sufficient is pretty important. I would grocery shop and carry the food into the house 2 cans at a time and not lift the bags.

Discussing and preparing our inner circle or loved ones and family members is crucial in that at least they understand that this will be a major surgery that will take years to fully recover from. At least they know what they can do for you, or at least be there when your having a bad day. There will be bad days, the immediate recovery or first few weeks can be pretty hard. Recovery is a See-Saw of up and down days that happens for months on end, but what happens after time is that we heal and have more good days than bad. As time passes, things get better, and there are less bad days.....Sleeping can be hard, and we take many cat naps. I was cat napping and tired from fatigue for 2 years.....

Discussions with others about scoliosis surgery can grow old......it does.....and while we want to get our points across, we have to be careful that we don’t kill our spouses or friends with “scoliosis” data. They can only handle so much.....so be patient. That’s why this forum is here.

There will be a lot of anxiety with all of this, I think that the most valuable thing I did was learn how to breathe deep. In hard, hold for a few, exhale slowly......Deep breaths, multiple times. Go for outdoor walks......This was printed on my post care paperwork in bold print stressing my walks be done OUTDOORS only.....Being the hiker and outdoor person that I am, I completely understood and agree. Walking is extremely important in our recoveries, short walks often throughout the day.

Scheduling conflicts and mishaps do happen with scoliosis surgeons......after all, they are very busy people. Breathe and wait, his PA will call you in time.

Hang in there, your stronger than you think.
Ed

I thank you so much for your kind words. Yes, I need to be reminded that I need to be strong, and not so dependent upon people. I think one of my concerns too is that with my husbands memory loss issues (amongst other things), he depends on me on a daily basis, and I fear that he will need me while I am immediately recovering and under major drugs, basically not with it. I realize that all I can do is plan on that, and know that it will all work out.
You are correct on how much others can listen to us talk about this, and I realize that not many outside of this forum want to hear anything about what scoliosis even is!
Walking is going to be my best friend! LOL I am so glad to hear of your adventures, and your humor in your posts is sure nice. Take care, and I look forward to getting to know everyone.

[hdsluckygirl13]

Another Update and thinking out loud....

Big sigh.... I never thought it possible to feel so many things at the same time. I am sick to my stomach today from trying to figure this all out. I have talked to Dr. Hart's assistant this morning who kindly answered the questions that I have that she could answer. As the Doc hasn't yet written up a surgical plan because I have not set in stone a surgery date or interest, some just can't be answered yet. I get that, no one can see the future. The pain tells me to do it, but my mind tells me not to. I feel optimistic, hesitant, confused, and scared all at the same time. As soon as one feeling gets strong, another feeling wipes it out. I think I should have named myself confused =( I just keep praying, and telling myself that things happen for a reason. Just don't like the unknown... Praying for strength, wisdom and guidance, for myself, my husband, and all others who need it.

Confused and worried

[PeggyS]

Big sigh.... I never thought it possible to feel so many things at the same time. I am sick to my stomach today from trying to figure this all out. I have talked to Dr. Hart's assistant this morning who kindly answered the questions that I have that she could answer. As the Doc hasn't yet written up a surgical plan because I have not set in stone a surgery date or interest, some just can't be answered yet. I get that, no one can see the future. The pain tells me to do it, but my mind tells me not to. I feel optimistic, hesitant, confused, and scared all at the same time. As soon as one feeling gets strong, another feeling wipes it out. I think I should have named myself confused =( I just keep praying, and telling myself that things happen for a reason. Just don't like the unknown... Praying for strength, wisdom and guidance, for myself, my husband, and all others who need it.

Confused and worried

Sending prayers for clarity. Hugs, too.

[Lizardacres]

Big sigh.... I never thought it possible to feel so many things at the same time. I am sick to my stomach today from trying to figure this all out. I have talked to Dr. Hart's assistant this morning who kindly answered the questions that I have that she could answer. As the Doc hasn't yet written up a surgical plan because I have not set in stone a surgery date or interest, some just can't be answered yet. I get that, no one can see the future. The pain tells me to do it, but my mind tells me not to. I feel optimistic, hesitant, confused, and scared all at the same time. As soon as one feeling gets strong, another feeling wipes it out. I think I should have named myself confused =( I just keep praying, and telling myself that things happen for a reason. Just don't like the unknown... Praying for strength, wisdom and guidance, for myself, my husband, and all others who need it.

Confused and worried

There is no rush to decide, let the idea simmer a while. Getting a second opinion can be very instructive and help you decide if this is the right time, even if you feel pretty sure you have already chosen your surgeon.

[PeggyS]

I had 4 opinions. It wasn't until I had an appt in St. Louis, that I realized I really DID need to do the surgery long distance. 2 out of the 3 ohio surgeons told me to go to St. Louis!

[hdsluckygirl13]

Advice, suggestions, help please.....

What do you do when you husband/significant other doesn't agree with you trying to decide and research your options you make? Today I was told by my husband as I am reading on the items on my MRI/CT Scan that are wrong with my back that I am "obsessed with this surgery." What if they say that suddenly since you were seen and recommended for surgery why are you having so much more pain? Yet, they don't want to wait for you to even say anything. I used to not have insurance, therefore NOTHING but dealing with the pain and numbness used to be an option for me. Now, I have OTHER options, but feel like the only decision that is being supported is to NOT have the surgery because all of the risks/complications are just too great. I have 4 bulging discs, severe spinal stenosis, facet joint pain, thickening of my ligamentum flavum, not to mention scoliosis with a 62 degree curve! I am not making up any of my symptoms, and am merely trying to research all of my options. I am tired of being accused of being "obsessed with this". I am just trying to make an educated decision. Ugh, I don't know what to say or do. I have a counselor, he has suggested things, but none of it works. I merely want to talk without arguing to my spouse about what is going on so that we can try to figure out what to do to give me back my quality of life. Any suggestions on ways to approach them would be appreciated. Thanks for listening to me vent, just feel really alone, and if I am not supported in a decision to have this surgery (which I still don't know for certain I want), I want to know that my husband supports me and isn't going to make me regret doing it.

[Irina]

Hi Crystal,

Would your husband be willing to go with you to your appointments with the surgeons? It might help if he hears what they have to say. He needs to be onboard...

[hdsluckygirl13]

Hi Crystal,

Would your husband be willing to go with you to your appointments with the surgeons? It might help if he hears what they have to say. He needs to be onboard...

He has and does go with me. The problem is that the 2 times that we have met with the surgeon, the surgeon barely even told me what surgery he thought I needed. I agree with you. Things are just so complicated, and don't want to bore everyone on here with the details. Just frustrating in a situation like this. His support is needed so that I can recover, if I choose to have this surgery. Thanks Irina...

[susancook]

Thank you, I was hoping to hear from you! I am just halfway through your story, and let me just say that you are an inspiration to me. I appreciate your candidness on all you have gone through. I just got a call yesterday from my Therapist, he said that he feels Dr. Hart feels optimistic about my mental state, then Dr. Hart's office called and asked if I was ready to set a date! Yikes!!!! I basically had to say that I still have some things to take care of before I can commit to a date, and lots of questions that I need answered first. They were ok with that. When you have time and feel up to it, I would love your thoughts/input on Dr. Hart and OHSU. Any information is helping me to alleviate all the fears and anxiousness. Thanks so much!

If anyone wants to put in their thoughts on Dr. Hart and/or OHSU please do. Knowledge to me is good =)

Sorry that I did not see your posting until now. It's tough being me....I'm high maintenance.

What are the "things that you need to take care of before I can commit to a date"? "Questions to ask" can be addressed in an appointment with Dr. Hart or his PA. Make a list and bring along someone to also take notes.

How do you make the decision to have surgery or not? I think that I started a thread about that when I was trying to decide. My bottom line: Surgery is a commitment. Most people are better after surgery, some the same, a small number are worse. I would say that I considered surgery after I had tried everything else non-surgical like injections, etc. Also, I was in a lot of pain and could not walk more than 1/2 block without sitting down. Pain had taken over my life....I didn't have a life. I was always looking for a chair, bed, or a cold pack. My advice, if it doesn't feel right, it isn't. BUT, very few people on the forum are 100% sure that they want surgery that actually have it. If you do not have a healthy fear of the surgery, you must have fallen asleep in the informed consent discussion.

I will send you a private message with my phone number and email. Want to get together for lunch or coffee?? My treat!

Take a deep breath and try to relax. You are obviously a survivor....give yourself some credit.

Susan

I found that phone conversations with Gayle were very helpful. She is wonderfully honest and "tells it like it is".

PS: I THINK that I sent you a Private Message....but when I looked under "sent"....it wasn't there ;+[. Call me if you received it.....send me a private message if you did not.

[hdsluckygirl13]

Happy Holidays to all...

I apologize as I started this thread, and haven't really posted/responded as I had initially wanted. There is allot going on in my life both physically and mentally/emotionally, and though I believe that it is all related to my condition, I don't want to bore everyone so have just been silent as I am afraid if I start I won't stop! lol Wow, laughter feels good. Right now everything is on hold in my life, surgery hasn't been decided yet, still trying to figure out how if I have it I am going to pay my bills, hired a lawyer to help with the SSI SSDI, so we shall see what happens with that. Not sure what is going on in regards to my relationship with my significant other, he has allot going on in addition to me, and some days I really wonder how much longer he is going to put up with me. I know if my heart he loves me, but I am not easy to live with, especially between the pain and the pain meds/side effects.

I am so glad that this forum is here, it helps me to put my life into perspective when reading what is going on with everyone else. From those trying to decide to have surgery, if so when,what kind, etc, to those that are dealing with having had it, you all matter a great deal to me. Though I don't speak often, know that I am here, and appreciate each and every one of you. You can contact me anytime...