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ZDawn
04-29-2014, 07:15 PM
I'm new to this forum but my story is pretty much the same, to some degree, as everyone else. For me my high school scoliosis (just watch) has raised it's ugly head in my 40's. I would work with PT for numb and weak legs that would come and go for about the past 8 years. I don't remember a time that I didn't have back pain, so that wasn't a big deal. In December I had a very hard week at work and I was 'broken.' New back pain and more frequent numbness and weakness.

I finally left the land of denial and started looking for help and answers. Looks like I have a T9 S1/pelvis fusion in my future! At first I wanted this done asap! But since reading stories here I now understand what a huge recovery is required. I'm 46 and in pretty good shape. But from the post here, I think I need to be in better shape! So thank you for sharing your stories and helping me understand how fully I need to prepare.

What is your hospital stay like? How long? Should someone stay 24/7 at the hospital? This worries me. My husband and son are great at home but both are terrible at the hospital. I got to see this when my dad had cancer. They did everything for him at home but could bearly function when he was in the hospital. LOL, typical men!

I'm usually better at writing but pain management doctor put me on Lyrica. I'm one step away from zombie! I gave it a try, titrated to the dose he wanted me on. Up my coffee to two pots just to function. Two weeks later and still a zombie! So weaning off now. It was expensive and didn't seem to help much.

So thanks for sharing your stories of recovery. But can I get some details about the time in the hospital?

Thanks!
Dawn

rohrer01
04-29-2014, 08:13 PM
Dawn,
I haven't had surgery, but wanted to welcome you to the forum.
I'm 45. Isn't it amazing how we hit 40 and then feel like we are falling apart?! Grrrr....
Someone with experience will chime in, I'm sure.
If your now out of shape, I wouldn't worry about postponing the surgery too much.
It seems that it's mostly the mental prep that people seem to go through.
Don't worry if your husband and son are terrible at the hospital. That's why you have nurses there to take care of you.
If they are great at home, you're good to go on that front.
I would do the worrying if it were the other way around with them.
Best of luck.

Rohrer01

mabeckoff
04-29-2014, 08:21 PM
Welcome Dawn.

KathK
04-29-2014, 09:20 PM
Welcome, Dawn!

I have a T9-sacrum fusion that was done when I was 46 years old. I also live in Ohio. I am very pleased with my results. I was in the hospital for 5 days and 4 nights. Since I had traveled to St. Louis for my surgery, I stayed for an additional week at a hotel adjacent to the hospital. My husband did stay in the hospital room with me overnight each night, for which I was extremely grateful. I'm sure that it was not absolutely necessary , but it was a great comfort to me.

I'm sorry that you are having such pain. Have you consulted with a surgeon?
Best,
Kathy

Irina
04-30-2014, 12:33 AM
Hi Down and welcome. I was in the hospital for 11 days, but it's longer than average. My husband or parents stayed with me almost every night, but it wasn't absolutely necessary. I would suggest having someone with you the first night after the surgery though.

susancook
04-30-2014, 02:45 AM
Hi Dawn, I was in the hospital for 10 days, then a rehab for a week. I had 2 days of surgery.
Advice: strengthen your quads! I had someone with me for some of the nights in the hospital. If you can find someone: girlfriends, brothers, sisters that is great.

Best of luck! I have a lengthy thread on my recovery and surgery. Best thing that I ever did!

Sorry about your pain. It was quite a motivator for me too!

welcome! Susan

the_baroness
04-30-2014, 04:57 PM
Hi Dawn - I am also in my 40's and had T10-pelvis, so we are similar. And I had a similar progression of pain and weakness and numbness prior to my decision to have surgery. And I have to say, even though recovery has been a trial, I still feel like I made the right decision. So I hope you are feeling a comfort level with your decision as well. I find it inspiring to think of all that metal in me holding me up - makes me feel tough and strong! Even if I don't actually feel physically strong just yet :)

I only stayed in the hospital 4 days. My drains took a long time to drain, or I think they might have even let me out earlier. I was so glad to leave. I hated it there. I don't think having my husband stay overnight with me would have helped matters, and I don't think they would have let him stay anyhow. The NYC hospital rooms are teeny tiny and there is literally no room to move around without knocking your roommate's water pitcher over onto her bed. Having guests during the day was great for me mentally, but there was never any place for them to stand or sit.

I too tried to get in shape before the surgery. I don't really have any way of knowing if it was effective or not. While I was on pain meds after the surgery, I never really experienced any problems. But after going off the pain meds and starting PT, it's been the toughest physical challenge of my life, and I don't know if any amount of getting in shape could have prepared me for that. I think the best kind of getting in shape I did prior to the surgery was mentally and emotionally. I took a lot of yoga classes and meditated and did tai chi and just generally tried to remain calm and "promote healing energy in my body" (new agey, I know, sorry!) I don't know how well all that worked either :) but it seemed like a good investment in time. And the physical workouts prior to surgery gave me something tangible to occupy my mind and keep me from stressing out too much.

Regarding your thoughts about whether you should have someone stay with you in the hospital, thinking back now how it went for me, I think maybe it would be far more helpful to make arrangements to have someone visit or stay once you get home from the hospital. In the hospital there are nurses and aids and call buttons, and pretty much constant attention. Once you get home, your familiar will need to get back to work, and you might end up being alone for whatever amount of time. I arranged to have my cleaning lady's young son come (age 13-ish) over a few days a week for a couple hours a day. It was summer, and his mom wanted him to have a summer job. Ostensibly he was supposed to be helping me with my small business, but it was a relief to have him there to do lifting, and light chores when asked. And your family will become exhausted by waiting on you (I know my poor husband did), and so if you have any extra or spare family members or friends who can stay with you or come over on a regular basis, you might really appreciate having them. I recall seeing a post I think from Linda on how nice it is to have a friend come over and change the cat box or just pick up all the things you dropped on the floor. I know I asked my helper to do both those things! In fact, one of his standing jobs when he arrived each day was to pick up the myriad of pencils and whatnot I had dropped and wasn't able to pick up. I paid him $10 an hour, and it was the best money I spent all summer! Anyhow, if you are marshalling and deploying your resources, consider having someone helping you once you get home rather than when you're in the hospital.

Best of luck! Keep us posted. Do you have a surgery date scheduled yet?

golfnut
04-30-2014, 08:51 PM
Welcome to the forum, Dawn. I was in the hospital for 6 days. I was told in advance that I would be in a room similar to ICU the first night so that it wasn't necessary for my husband to stay with me. He stayed the following two nights and I paid for a private aide for the 4th night. It seemed that I had the best nursing staff during the night that I paid someone and really wouldn't have needed to do so.
Find the best surgeon possible and get in the best physical shape that you can. This forum can give you so much support. Don't hesitate to voice your concerns as it is a big decision to have this surgery, but one that most of us are happy we made.

mabeckoff
04-30-2014, 09:58 PM
I have been in hospital for many surgeries and my husband has stayed with me all of the time. UCI encourages patients to have someone stay with them. All of their rooms are private and at night it was very helpful to have him there.

Who is your surgeon and what hospital will you be in?

ZDawn
05-03-2014, 09:37 AM
Thank you all for your input. Fear of the unknown is getting better with the insight all of you are sharing. And it's so nice not to be alone, I don't know anyone else that needs multilevel fusions. My irony, I work as an RN on a Neuro unit! I'm at a smaller hospital and any backs we have are one or two levels. But mostly we deal with brain problems, strokes, seizures, tumors, trauma.

I will have surgery at the Main Campus of Cleveland Clinic and will have both a Neuro and ortho surgeon. At this point it looks like an A/P approach. I'm still in the early stages of this journey and I do not have a surgery date. Just did facet injections yesterday. I appreciate the pain relief but don't understand why it's needed for diagnostic. All the other images don't tell enough? My symptoms aren't enough? But I'll do what's needed and take this time to get stronger.

I'm in pretty good shape but this long winter took it out of all of us up north. Even with my crazy back, I can do anything I want. I just have to be willing to pay the price (pain). I love to golf and work in the yard. I use to run, even did a half marathon 2 years ago. I stopped running because of depression after my dad died just before the half marathon. I think running (I run like a penguin) and my core work out helped my back. Yes, after 40 things do seem to start falling apart! Especially if we don't listen to our bodies. I think with my back I didn't listen soon enough but I really didn't know how bad it was. If you look at me you might notice a slight shoulder dip and you'd think I have VERY straight posture. I wasn't that worried about my hump getting bigger, I was getting older. The first time I looked at my xray (not the report) I almost hit the floor. Not as bad as most of you here but nowhere near normal. I have a 50* lumbar curve and a 45* rotation. Once I get my son's attention, I'll have him help me post my xray.

My husband and son are my only family in the area. I have a great group of friends and will take all of the offers of help but once I get home. I love the story of $10/hour to pick things up! I've been focusing on core but will add quads. Keep the tips coming! With the decrease in activity right after surgery, how much weight do you usually gain? How horrible that NYC hospitals still have roommates. Most hospitals in this area are private rooms only. I stayed with my friend after her surgery. Beautiful room with view of the woods, sitting area (pull out couch), shower in the bathroom. Main Campus doesn't have the views but staff was always great with my dad. But the extra TLC came from me. Nursing ratios can be rough some days.

Keep the tips coming!

titaniumed
05-03-2014, 02:16 PM
I must say “Gotta love a nurse”.....It was my nursing staff that brought me back after such a fun time....I even learned how to install an NG tube since I was a hose puller! I was an injured bull in a china closet....NPO is an interesting state, no food by mouth, no bathroom, not getting hungry.....I finally ate after 9 days. The resulting ileus came and went like a bad chapter in a book.

Funny how we go through life and learn to ignore our severe situations to a degree, and then the downhill slide begins in our 40’s. Our methods of maintaining our pain and sanity become more of a problem, and then we finally decide that its just not worth continuing like this. At age 48, I was struggling with sciatica which was around a 6 year battle. Hard to believe I did that but I did. There are a ton of decision making threads here with many thoughts on the matter. “Am I ready for this?” Hmmm......We read and we think....”Am I committed?” hmmm.....Commitment and desire needs to be 100% Yes, means yes.

I had a massive A/P, had all lumbar discs removed from the front (ALIF) and replaced with peek spacers along with BMP (Infuse kits) Of course, anterior means front or side, and after having other laproscopic surgeries, it would have been a whole lot easier “If” this could have been done. I wasn’t arguing with my surgeon and I knew my lower levels were diseased beyond belief. I had no guarantees, and didn’t expect my lower area to come out as well as it did. I went from 10 level pain down low, to a 0 level. It took me a few years to believe that it worked so well.

I did 10 days, then ran home avoiding a scheduled 30 day rehab. I wouldn’t recommend doing this, and I wouldn’t leave till you are weaned to orals. I did that home alone, and couldn’t sleep.....lost 40#. The benefits of running home are the fact that I save the insurance company a fortune, and had all the nurses and PT people coming out to my home every day. “Ed, are you awake?” Uhhh....”I never went to bed”. I basically did a lot of pacing and took a lot of hot soaks for pain.

It all came around in the end...as it always does. We have revision patients here that do revisions for particular reasons, but most come through. I lost my gall bladder which is one of the rare scoliosis surgery complications. That was really a minor thing other than the attacks, but in the end it was all worth it. We need to know about complications because they happen. We cant possibly know them all....its impossible, but at least be aware that things do happen that need to be dealt with. I would ask your surgeon about proximal junctional kyphosis (PJK)

It was a 2 year recovery.

Welcome to the forum

Ed

golfnut
05-03-2014, 10:45 PM
Dawn,
You asked about weight gain and I think that most people experience weight loss after the surgery. Apparently, your body burns a lot of calories healing from this major surgery. I walked as much as possible and lost 9 pounds and kept at least 5 pounds off long term. I am not sure what the hardware weighs so it might even be more if I subtracted that. I know I look like I weigh less because I am taller and straighter.
I noticed that you mentioned that you love to play golf. I played a lot of golf prior to surgery and was not allowed to play for over a year. You can click on the link in my "signature" to see my first round back to golfing after surgery. Now, at 3 years post op, my swing is much better than it was at the video. I couldn't imagine that it would be possible to play decent golf with long rods in my back, but it's better than I hoped.

ZDawn
05-14-2014, 01:22 PM
I feel like I'm going thru the stages of grief. I was in anger for the past week or so. Was at bargain for awhile too. I think I'm heading to acceptance now, not there yet but almost. Two thoughts stick with me; I read here that if you have little pain before surgery you have a low satisfaction with surgery (something to that effect). And commitment, yes is yes. My pain stays low as long as I watch what I do and how I do it. So if I have surgery now, will I be mad at myself for doing it and having to deal with recovery. Like Ed said, our method of maintaining becomes more of a problem. I guess my method hasn't become too big of a problem yet. So because of that, my commitment isn't 100% yet.

Ed, guess I don't have to worry about gallbladder, mines been gone for years! But I will ask about PJK. I have appointment next Thursday. I've been collecting up my questions and concerns. I've been doing my research about the surgery, recovery and my surgeons. Since I work at a Clinic hospital, word of mouth has been helpful too. There's only one doc who is recommended more but it takes months to get into see him. And I already have trust with my doc and am very comfortable with her and her nurse.

Ed, you would have been my favorite patient. I love the trouble makers! Give me the bad boys who pull things out, try to climb out of bed, etc. I love the challenge of getting you better especially when you're working against me. Nurses are a strange group!

The Baroness, your personality reminds me of my best friend (Since we were 3). She has me doing some yoga CD' s but mostly for the breathing and relaxing. She has me eating whole foods and trying to get me off red meat. I have the science, she has the rest, the "new age" stuff.

Karen, I golf, in the sense that I hit a ball with a club. I suck! But it's something my husband and I do together. Mostly we play small public courses. I enjoy being outside and laugh at myself when my game goes to carp. But I get a little better every year. So it's nice to know I'll be able to play after fusion.

I'm glad to hear most people don't gain weight. I lost a bunch of weight in the past and I don't want to have to do that again.

And once again, I'm so thankful for all of the insight found here. I'm working on finding my 100% commitment. Maybe my next appointment will bring some additional information that will help.

Doodles
05-14-2014, 08:02 PM
Dawn--
Welcome to the forum! What a great attitude you have--you'll do just fine. Janet

PeggyS
05-20-2014, 08:34 PM
Dawn, you've expressed what I've been feeling. My pain is manageable. I'm not 'wishing' for pain, but it sure seems like it would make the decision easier! If I knew my curve wouldn't progress, I'd opt out of surgery. (I had a 10* increase in the past year). But, like you & Ed, I wonder how much the maintenance I'm doing really affects my life.
I live in Columbus, OH - grew up west of Cleveland, in Avon. I'm really interested in knowing who your surgeon will be and also who other one is, that you considered. Please send me a pm if you don't want to give that info. on the forum. I'll probably go to St. Louis for my surgery, but I haven't given up the search for a closer option.

Welcome to the forum. I really appreciate reading about your insight into making your decision & then accepting it. It helps to hear from all of you 'experienced folks', too! Thanks, everyone!

LindaRacine
05-20-2014, 10:35 PM
Dawn, you've expressed what I've been feeling. My pain is manageable. I'm not 'wishing' for pain, but it sure seems like it would make the decision easier! If I knew my curve wouldn't progress, I'd opt out of surgery. (I had a 10* increase in the past year). But, like you & Ed, I wonder how much the maintenance I'm doing really affects my life.
I live in Columbus, OH - grew up west of Cleveland, in Avon. I'm really interested in knowing who your surgeon will be and also who other one is, that you considered. Please send me a pm if you don't want to give that info. on the forum. I'll probably go to St. Louis for my surgery, but I haven't given up the search for a closer option.

Welcome to the forum. I really appreciate reading about your insight into making your decision & then accepting it. It helps to hear from all of you 'experienced folks', too! Thanks, everyone!

Hi Peggy...

Not to freak you out, but a 10 degree increase in a 60 year old is a little concerning. If you have any other unexplained new symptoms, you might want to get checked for something neuromuscular (e.g., Parkinson's).

--Linda

ZDawn
05-20-2014, 11:07 PM
So the rain finally stopped here so I went for a "short" walk. It's my old short run route, just two miles. I haven't walked that much with no stopping in a long time, it was a looong winter. And I will not be doing that again. I was in soooo much pain. And then the next day was a physically hard day at work. My method to maintain just failed and failed big! And I feel like my curve has changed in the past week (is that possible?). My shoulders no longer feel like they're over my hips, I'm off to the left now, like my left shoulder is left of my left hip. How can that happen in just 7-10 days????? My husband says I look the same but I don't think so. My waist wasn't equal before but now it seems to be more unequal. And I have a new ache in my upper back. It feels like my lumbar hump ache. Just that 'normal' constant hump ache but now it's also in my upper back opposite side of my lumbar hump.

So this is perfect timing since I see my Neuro doc on Thursday. My method to maintain has failed and my commitment is now 100%! My back will never be normal, no PT will hold me together, no injections will solve this and I'm tired of giving up living to avoid pain. My only 'solution' is to have surgery, do the recovery and get back to living. I have done my research, read the stories, weighed the pros and cons; just like all of us scolis, I need to do the surgery and I am ready and now is my time. I know I have the right surgeons, I have the right OR team and have the right ICU team and have my home support. Give me a date for OR and let's get this done! I can not wait to be scared shitless the night before surgery, can't wait for constipation from the pain meds and the mini withdrawal from pain meds. Can't wait for PT to kick my butt to walk 10 feet after surgery. I want the crazy weird healing pains. I want to leave the dropped stuff on the floor (give the cats New stuff to play with). I want to figure out how to wipe my butt without bending or twisting. BRING IT ON! I WANT MY LIFE BACK!

So.....do you think I'm ready!!!!?? Hell yes! My Neuro doc is Dr Tiffany Perry and the Ortho doc is Dr Orr. Both are Cleveland Clinic docs, makes sense since that's who I work for. They did a great job taking care of my mom and dad so I know CCF as both an employer and as a health care provider. I have great respect and trust in both the system and the people within CCF. (Did that just sound like a programmed response? But it is the truth). I'm ready for this. So in two days I'm ready to meet with my surgeons and get this going! I hope my next post will be an OR date.

PEG----have you been to Avon lately? Big changes! I grew up in west park and move to Lakewood in 1982 (Cleveland bussing) and graduated in '85. Raised my kids in LKDW and work at Lakewood Hospital. If you still have family in the area, check out Dr Perry as a second opinion or Dr Orr. She is 'just' a neurosurgeon but Dr Orr is a scoli specialist. I see Dr Perry since I have a Neuro background in my job. PM if you need more info since I've been so long winded already, sorry!

I've read years of post and got to see lots of people travel the same journey I have just started. Some day someone will read my story and gain the confidence to have surgery (I hope) because of me. Just like I gain the confidence from past people and their post. Thank you, thank you, thank you.....your journey has helped me in my journey. Each person has their own twist that they add to this complicated journey. I am grateful.

To end my long post, a little humor. I love love love my hammock! Since I know our time this summer is limited, I want to be in my hammock as much as possible. But if you have had a glass of wine or more, it is NOT a good idea......can you picture it? Yes, I did flip out of it!!!! LOL! Once my husband knew I was ok, he laughed his ass off and wished he had it on video.

Good night all and so happy to have you all here......
Dawn Anne

Irina
05-21-2014, 12:21 AM
Dawn, you are ready. Hope you'd have the date soon. Good luck!

golfnut
05-21-2014, 07:12 AM
Dawn,
I love your sense of humor. What helped me during recovery was keeping in mind that everything I needed for basics, such as, a long handled razor, special tongs for wiping, a sock aide, and grabbers all over the house, would be temporary aides because my condition was eventually going to improve. I have a best friend who is paralyzed and will never be able to walk which kept me from having any pity for myself during recovery. I read that you will have anterior and posterior approach. Dr. Lenke does a reach around to insert BMP to the anterior spine from the posterior side so that only one incision is needed. You could ask if your surgeon is familiar with this.
You have a good attitude and that is so important!

PeggyS
05-21-2014, 08:41 AM
LOL, Dawn - video of your hammock ordeal would've been priceless! I fell off the back of the golf cart, yesterday! Took a minute on the ground to assess the damage, fortunately I'm ok.

Linda, thanks for your 'heads up' about other symptoms. I don't have any - I don't think. I was in an accident last summer, that may have contributed to the 10* curve increase.? A few degrees might be due to measurement variables. To me, this confirms that I do need to have the surgery - probably this fall. I'm waiting for my husband to heal from his surgeries so he can take good care of me!

titaniumed
05-21-2014, 10:23 PM
I read that you will have anterior and posterior approach. Dr. Lenke does a reach around to insert BMP to the anterior spine from the posterior side so that only one incision is needed. You could ask if your surgeon is familiar with this.
You have a good attitude and that is so important!

This is a valid question from Karen.....Of course any usage of BMP other than done with an ALIF would be considered “Off Label” and not recommended by the FDA. Dr Lenke does TLIF with BMP, but then again he is Dr Lenke.....(smiley face)

When Karen Ocker had her bowel obstruction last year, and more than likely due to “Adhesions” or “scar tissue”, we learned an important lesson from her....After you have had an ALIF, this kinda sinks in. If you are reading Karen, we miss your posts. I hope you recovered ok from the last surgery.

I wasn’t about to dictate procedure with my surgeon....He explained that fusing from the front and the back solidifies and increases the integrity of the construct. I don’t think he wanted to chance a PLIF on me while using BMP. I am kinda wondering if ALIF is only used on the worst lumbar scenarios???? What exactly ARE the parameters for ALIF???

I do know that after my surgeries, ALL, and I repeat ALL pain in my lumbar is completely gone. I never expected this much success. My L5 was a triangle shape at the base of a 70 degree curve. The surgeons can also trim more bone spurs and have better access to the front of the spine with this method....Removal of the disc in the spinal cord area is another thing that probably supports ALIF, I have read that sometimes they cant get all the disc material out and this can present problems.

I had a vascular surgeon dig the hole.....It nice to have these guys hanging around. Bring em all in I say! The more the merrier!

Pros and cons.....valid questions.....

Ed

golfnut
05-21-2014, 11:03 PM
Ed,
I may not have it correct. . . I don't think he does an anterior approach, but I could be wrong.

the_baroness
05-22-2014, 01:26 PM
I have done my research, read the stories, weighed the pros and cons; just like all of us scolis, I need to do the surgery and I am ready and now is my time. I know I have the right surgeons, I have the right OR team and have the right ICU team and have my home support. Give me a date for OR and let's get this done! I can not wait to be scared shitless the night before surgery, can't wait for constipation from the pain meds and the mini withdrawal from pain meds. Can't wait for PT to kick my butt to walk 10 feet after surgery. I want the crazy weird healing pains. I want to leave the dropped stuff on the floor (give the cats New stuff to play with). I want to figure out how to wipe my butt without bending or twisting. BRING IT ON! I WANT MY LIFE BACK!

You go, girl! You're going to do great! Just keep that fire going and let it carry you through!

ZDawn
05-23-2014, 08:27 PM
So neurosurgeon doesn't think I'm ready for this. My "expectations for surgery results are not in line with what surgery can offer." She unsure if my pain complaints will be fixed by fusion and unsure if it will correct my numbness in my leg. WTF! She wants me to see the ortho doc to see if I need my hip fixed first. And not do a fusion at this point. "I don't want you upset with the results of the fusion and be unsatisfied. It's some thing that can't be undone." I explained that I've done my research and understand the recovery and the end results.

So off to the ortho doc (who is a scoli specialist) to see how fixing my hip and not my back will help me. I have psoas (sp?) Pain that injection helped for only 4 days. Also bursitis and sciatic pain, all of this is my left hip. My sciatic pain does not effect my whole leg just from around S1 (upper butt) to my upper back of my thigh. Of course I have lower back pain that is great on the right than left and it is not constant. It flares up when I do too much and laying down is the only thing that helps. My constant hump pain is mostly gone after my facet injection.

My whole right leg and foot is numb. And some days there are left leg and foot numb issues. My skin is numb across my lower back and my skin across my groin area. It seems like it has gotten worse in the past two weeks. I told her I was concerned about permanent nerve damage. She said an acute issue will not cause perm damage. I also had told her, earlier in the appointment, that I feel my curve had slide off to the left. She said it still looked balanced.

I guess it's off to the other half of this team, ortho doc. I guess I'm just really confused that my first appointment with the Nero doc, she's the one that said fusion was the only solution, that soon was better and that after recovery I could go back to work and running. And now she doesn't think this is the right thing for me and I'm not ready.

I'm just so confused and frustrated. Because I'm approaching this with logic, protect my back from further changes, avoid nerve damage and be able to go back to living because my pain will be gone. I ended up in tears of frustration that a couple months later and nothing has changed. I can live with pain, it's not going to kill me. But I want to stop any progression and protect my nerves. It just seems like a no-brainer to me. UgH! So off for another appointment.....

PeggyS
05-23-2014, 09:15 PM
Oh, Dawn . . . that's a whole lot of frustration! Your appt certainly did not go the way you expected. I hope your ortho has some answers for you. Please keep us posted. Take care.

LindaRacine
05-23-2014, 11:56 PM
I'm just so confused and frustrated. Because I'm approaching this with logic, protect my back from further changes, avoid nerve damage and be able to go back to living because my pain will be gone. I ended up in tears of frustration that a couple months later and nothing has changed. I can live with pain, it's not going to kill me. But I want to stop any progression and protect my nerves. It just seems like a no-brainer to me. UgH! So off for another appointment.....
Hi Dawn...

This is probably not going to be a very popular answer, but I think I can understand why your surgeon might think you have unrealistic expectations. I don't know you, and know very little about your history. While you're saying that you know that you might still have pain, you're also saying "my pain will be gone". I suspect that's what your surgeon is picking up. Conservative surgeons want to do surgeries on patients who stand the best chance of having good outcomes. When a conservative surgeon sees a red flag, they react the way your surgeon did. I think a patient who says "I'll be out of pain" stands a reasonable chance of being very disappointed with their outcome. Unfortunately, scoliosis surgery is not a magic bullet. While a relatively small percentage of us truly have no back pain after surgery, the vast majority of adults who have scoliosis surgery end up with some permanent back pain. Did you know that somewhere around 80-85% of all adults have back pain? So, if most people with straight backs have back pain, it's really unreasonable to believe that those of us with curved spines might live without pain.

I know that you read a lot about people who have great surgical outcomes and think surgery was the best thing that ever happened to them. I read them too. Hell, I'm one of them. But, hardly a week goes by that I don't get an email, PM, or a phone call from someone who doesn't want to scare other people by posting their story.

So, my advice would be to take a little time and jump through the hoops that your surgeon has set before you. If you're really certain that surgery is the right thing for you, try to transmit that you know there are significant risks and that you might be worse off afterward, but that you're willing to take the risk to have a chance at having a better quality of life. Hopefully, the surgeon will pick up on that. In the meantime, you never know when one of those hoops will end up being a better solution than scoliosis surgery.

Regards,
Linda

P.S. BTW, I can imagine how frustrating it must be to get the kind of news you go. When you make the decision, you think it's a done deal.

mabeckoff
05-24-2014, 12:59 AM
What a frustrating appointment. If you are really serious about having surgery, then do what your surgeon wants you to do and then go back to see her.

Melissa

springchicken
05-24-2014, 11:51 AM
Hi Dawn,

I really feel for what you are going through. I have dealt with so many surgeons over the years whose abrupt bedside manners were incredibly disheartening. One of the very top surgeons in Philadelphia told me I should "wait to have surgery till I've had some kids and I'm bored in my 50s living in the suburbs." I was so shocked by his presumptuous and sexist attitude I think I could barely speak. I guess my point is, when you're living with pain, and it's taken you a while to make a very hard decision to attempt to change your life for the better, you'd like someone to treat you without condescension.

It's very important that surgeons be conservative. I get that. I didn't read anything in what you said that indicated you were giving yourself false hopes. You seemed realistic. Deciding to have surgery requires some optimism and I see nothing wrong with what you were saying. But, follow the surgeon's advice and talk to the scoliosis specialist. I was under the impression that leg pain was one of the types of pain that often has very successful results after surgery. Perhaps your pain is not related to your scoliosis, so it's worth exploring, but a good surgeon will have a good idea where your pain is coming from.

The surgeon who performed my surgery told me there was no guarantee the surgery would fix my pain. But he did say, straight up, that the persistent pain in my left side was caused from my left lumbar curve and it would be eliminated. He was right. It has completely gone.

Of course scoliosis surgery is not the end all be all to back pain. I think most are aware of that even if they aren't able to articulate it in a way that reassures the surgeon. If you live a sedentary lifestyle and sit at a desk all day long, you are going to encounter back pain. But I think what reassured me when doing the research were the number of people who were active at one point pre-surgery, had to gradually decrease what they loved doing, but then were able to eventually resume their activities again post-surgery. And I have encountered people who have had very successful results that don't post on forums since they just don't see the need.

Anyways, just my two cents. THe very best of luck to you in your journey. Keep talking to people and exploring options and try to keep your chin up. There are a lot of really great people on this forum who will support you in whatever you decide!

-spring chicken

Irina
05-24-2014, 06:28 PM
Is it common to have a neurosurgeon on a team? I had three consults with orthopedic surgeons, all scoliosis specialists before I decided to pull a trigger. My chosen surgeon did not have any neurosurgeon working with her on my case. May be your appointment with ortho doctor will go better?

golfnut
05-24-2014, 10:35 PM
I only met with Dr. Lenke. I don't know the standard procedure. I certainly wouldn't have wanted to hear conflicting recommendations for or against surgery.

LindaRacine
05-24-2014, 11:20 PM
Is it common to have a neurosurgeon on a team? I had three consults with orthopedic surgeons, all scoliosis specialists before I decided to pull a trigger. My chosen surgeon did not have any neurosurgeon working with her on my case. May be your appointment with ortho doctor will go better?

There's really very little that is "standard" about scoliosis surgery. Until about 10-15 years ago, I never heard of neurosurgeons performing complex spine surgery. Now, there seem to be a lot of them. At UCSF, most of the spine neurosurgeons bring orthopaedic surgeons into their complex surgeries.

--Linda

ZDawn
06-17-2014, 06:41 PM
So I needed to stop letting scoliosis rule (and ruin) my life. I stepped away from here to get back to life. I let my frustration and confusion fade. And now I'm on a little stay-cation. Thank you for all the support and understanding. And just to clarify; I misspoke when I said all this pain will be gone. I know most people have back pain to some degree. I guess I was speaking of my scoli pain that the doc said would improve.

But this is a journey with ups and downs. I'll continue to see what I can do to improve my quality of life. See what the ortho doc has to say on the 25th. And stay off the hammock if I've been drinking wine!

ZDawn
07-09-2014, 03:13 PM
I saw the scoliosis doc and now I have a better understanding about my back and the effect on the rest of my body. And we also have a plan! First I'll get my hip fixed and hope that will allow my back pain to calm down. That way I'll be able to put off back surgery (we hope). He told me that if he does my back first, he's 100% sure I'll still need my hip replaced. He spent more time talking/explaining/answering my questions then I could have asked for. I never felt rushed even when I was asking a ton of questions.

Has anyone here needed a hip replacement because of their scoliosis?

jrnyc
07-09-2014, 05:27 PM
Dawn...i do not remember reading what size your curves are...?

i have been developing hip problems for the past year or so....my left hip has bursitis as found on an MRI...it has a burning awful pain...used to be only when i walked i got the burning pain but then it started showing up 90% of the time...
i get half dose steroid shots into that hip for it....i have to be careful because i was overdosed with steroids a few years ago and it crashed my cortisol level to almost zero....
i can only risk very limited amounts of steroid now..
my right hip has started to hurt lately as well...
the doctors tell me it is from UNEVEN LOADING of the hips, due to scoliosis...
my T curve is 41 while my L curve is now 64 degrees...

hope you feel better
jess...and Sparky

PeggyS
07-11-2014, 07:35 PM
Hi Dawn! It's good to hear from you! I've wondered 'what's next'. I can't help with your question about hips, but having a plan is a good thing.

ZDawn
08-28-2014, 12:03 AM
Sorry I fell off for awhile. Life has thrown a new"curve" for me. I'm in the middle of changing jobs and locations. Moving to Colorado! I think my back/hip issues will be on hold for awhile. Wishing all of you strength and happiness.......