Four J's in June

[mbeckoff]

Sending the best for the four J"s in the month of June

Melissa

[Confusedmom]

checking in with the other Js of June

Dear J's of June,

After reading today about Joyful, I am so disturbed. Obviously someone has got to be that 1% with terrible complications, but it is so much worse when it is someone you "know" (as we all know each other a little through this forum).

Anyway, my question is this: Knowing what you know now, and with all that each of you has been through, would you do this again? I am troubled by all the complications that you Jen, Janet and JennyRN have had, as well. I just want to know if you think the result is worth it--or maybe it is still too early to tell? Do you have a sense of whether you will be happy about this surgery when you are fully recovered, despite the complications?

Thanks,
Evelyn

[jsully]

At times I am happy. At times I am not. I do think it is too soon to tell. I tried to save my last disc for awhile and am starting to believe that is where my problems come from. When I stand up straight my lower back hurts so I think I lean forward to compensate. I also get very tight squeezing shoulder pain still. I currently have no pain in the areas fused though, just above and below. Hopefully, the pain will subside. I do think I will have to add on that last disc maybe sooner then later.
Janet

[mbeckoff]

I had my surgery on May 4th and I almost died. My kidneys stopped working during the surgery and did not work for three days.I also was totally over dosed with pain medicine the week after the surgery. I do not remember anything that happened nor anyone that visited me until I was in rehab. I do not remember anything from the time I was in the OR holding area when they were trying to get a IV started which took them an hour until I was in rehab on May 11. I just passed my 4 month post op mark and I really cannot tell you if I am happy or not that I have had the surgery. I am still in a lot of pain and discomfort which my surgeon tells me will not go away until next spring.
I traded one type of pain for another. My surgeon was very frank with me , however, about the risks that I was taking with this operation. I do look much better.

Melissa

[golfnut]

Evelyn,
I am upset,as well, after reading Joy's son's post about her condition. She sounds so similar to me-large curve, good health, little or no pain, and our ages are close. I was scared enough anyway, just thinking about the pain involved in recovery, the constipation, the inability to do basic things around the house, etc. Now, I am terrified and once again, thinking, am I nuts to do this?

[JenM]

Evelyn-

I had my surgery on the same day as Joyfull on June 8. I am absolutely devastated reading her post. I spoke to her on the phone when I first decided I wanted to have the surgery which was Oct 2009. She had her surgery booked with my surgeon and then around Feb 2010 switched it to another one who was doing some kind of minimally invasive technique.

I have to say I look soooo much better and that is probably one of the only things I have to say is a plus about my surgery so far. On the other hand, my neck/shoulder pain was so bad today that I was practically in tears all day wishing I never ever had the surgery. I can barely take care of my kids all day. It seems like my neck is spasming which is leading to a pinched nerve down my collar bone/shoulder blade. This pain is horrible and is not even close to the back pain I had before surgery. I'm like Melissa in that I traded pains. I am starting to get very depressed too as I never thought the recovery would have been this painful. I'm scared that this pain will never go away. I am taking oxycodone again for it and it doesn't even take the pain away. I didn't need meds before my surgery and I need them now and they don't even take the pain away.....I'll let you know in a few months what I think about having the surgery. I'll keep you updated...

JenM

[LisaB]

Hi Evelyn- Anytime you want to come over and see the "new me" and talk about how it went and my home recovery,just give me a call or email and come on over. At this point I'm happy I had the surgery because I look and feel better and of course I haven't had anything more than a little constipation and some pain on my right side where everything moved so much. My massage therapist came over today and stayed away from the fusion area but said that my right shoulder was so tight and it had muscles connected to the middle of my ribs where I was sore and that after massaging my shoulder and that area I no longer hurt in my ribs. She said it will take awhile for everything to find it's new place. Just looking at my x-rays you can see body parts have been moved. And I'm getting used to Raisin Bran and prune juice for breakfast every morning.

[JennyRN]

Initially when we discovered my scoliosis at age 14, my surgeon suggested surgery. My curves were both around the 45 and 50 degree mark. I had little to no pain. I had things I wanted to "do" as a teenager and young adult that I knew I would not have the opportunity to do if my spine was fused, so I elected to hold off until my curves progressed or I experienced pain that affected my daily life. After "waiting and watching" my scoliosis for 16 years (and 2 babies later), I finally reached the point where my curve was progressing and I had a significant amount of pain. I was fully aware of the risks and benefits going into surgery. I knew that my pain may not be "fixed," I could get infections, become paralyzed, or even die. I also knew that my quality of life now and later could be improved and the odds of that were greater. I kind of looked at it a little bit like playing the lottery. If the odds were that much in my favor for "winning," I would be crazy not to "play."

I haven't had the smoothest recovery. I had surgery a week and a half after the first to remove the bone graft and clean out the entire incision. I was on high doses of antibiotics with a picc line until my third surgery on August 16 and then for two more weeks after that. At this point, I am finally starting to feel like I'm moving in the right direction, but I'm still relying on pain meds/muscle relaxers to make it through the day. I've had to have someone here with my kids (usually my mom or mother-in-law) at all times because I can't lift them. I feel like I have no privacy. I've hit periods of depression over the last 3 months. My husband and I both knew that even though this was MY surgery it would be OUR recovery time.

Knowing all that would I do it again? Absolutely! Even though I'm still hurting at this point, I know that over time my muscles will improve. I know I may not ever be completely pain free, but I can take a deep breath without feeling constriction in my right rib. Just being able to feel that little bit of improvement immediately made me realize that this surgery was the right thing to do. If I would have waited any longer, who knows what type of irreversible damage would have happened by my heart and lungs being restricted? (And some of Joy's complications could have been because of the severity of her curve at the time of surgery.) The recovery has been slower that I had initially imagined and there have been times when I've started to question if this was the "right" time to do this, but all in all, I think I made the right decision for me.

[hdugger]

Jenny,

Do you regret waiting until you were a little older, instead of having the surgery when you were younger?

I ask because my son is playing the same odds. He's 23 with a 50-something unpainful curve which isn't progressing, and he doesn't really want to address it until it "does" something (either starts hurting or starts progressing).

[jsully]

hdugger,
I definitely regret waiting. If he is fused now he may not have to have as many levels fused, he will get a better correction because of more flexibility and he will heal much faster.
Janet

[naptown78]

Glad I did it!

Evelyn,
I know this question was not addressed to me (I'm not one of the 4 J's in June) but as far as if I would do this again knowing what I know now...this is a tough question. As you know, I am one of the ones to have a serious complication requiring further surgery. As I think back to what I felt like prior to my first surgery I remember severe sciatica in my left leg, lower back pain every time I went to work or did anything remotely physical. I was not followed by an orthopedic surgeon for my scoliosis until I was in my 40's. When I was younger, I had periodic back spasms that I realize now were related to my scoliosis but I just went to my PCP and was treated with muscle relaxers and NSAIDS. Knowing everything...if you had asked me this a year ago, I would have said I wish I had never done it. Now, after my revision I have a new answer! I do not regret either surgery as it has relieved me of my back pain, and the severe sciatica in my left leg. I would not have done it when I was younger as I cannot imagine going through the recovery with young children (Cheers to those who are doing it with little ones!) I am typically one to wait until everything else has been tried and failed so to have surgery such as this w/o actually having pain or loss of function or disability is a huge decision.
Interesting when I think back to my younger years, I thought that EVERYONE had back pain! So that is why I just lived with it and never pursued my scoliosis diagnosis. It never occured to me that my curves could progress or that I would need surgery someday. It does seem like the pain got worse when I became a nurse, and when I had babies.
It is hard to know if you are glad you had this surgery until at least a year has passed I think due to all the recovery kinks you go through.
All in all it's been worth it for me...Good luck in your journey ;-)))

[JennyRN]

Dhugger,
The challenges I have now during my recovery at age 30 are different than what I would have had when I was younger. For instance, I have two very young children that I have to find child care for - but on the plus side, that has also helped to have someone here that is available to help me physically when I needed it especially when I first got home from the hospital. I also think that at this point I am more capable of dealing with the pain and the setbacks than I would have been when I was younger. I would have had a very difficult time as a teenager (or even in my early twenties) being able to cope with the (temporary) loss of independence in the intitial post op period. (It's a very embarrassing experience having someone else wipe your behind because you can't bend/twist to reach it.) I also think that my knowledge as a nurse helped me tremendously. I had very realistic expectations going into my surgery about what to expect. I would not have been that realistic ten years ago and would have gotten easily discouraged by the slow recovery period. Granted, I may have been in better shape then and my recovery would have gone a little faster. Overall, I think my maturity level has made a huge difference every step along the way and for me waiting until now was the better thing to do!

[junosand]

preop preparation

i guess we should always have our affairs in order, whether undergoing surgery or not

i apparently feel differently from most; i am positively excited and can't wait to have the surgery, no matter how much it's going to hurt; i'm just eager to reap the ultimate benefits that i'm confidently will happen

watching dr lenke's video helped me considerably; as a surgeon, of course, i have zero squeamishness but, from knowing exactly what is done, i understand better the importance of following postop instructions i.e. no matter how well i feel, not to bend, twist, lift or exercise beyond what is approved; i can visualize the enormous amount of healing and new bone growth that has to occur before it is completely healed (easily 6 mos - year)

another difference in my perspective, as a surgeon, might be this: while most of you focus your fear on the surgery itself, to me, the surgery is nothing to fear, it's just the beginning; when i would take out a child's tonsils, after the surgery i would have a talk with the parents and i always would say, "What i just did is the easy part, you have the hard part taking care of him/her," since there is about of week of a very sore throat afterward

we get to sleep through the surgery while our surgeon works hard; odds of dying "on the table" are extremely remote so it's when we wake up that
the "fun" begins; if i'm anxious about anything, it's the week after trying to get out of the hospital and back home; i'm planning to set goals (not in stone, but to aim for) of what to achieve when in order to be discharged in a week or less; e.g. get all lines out by day 3 or 4, off IV pain meds by day 5 or 6, and work at walking independently as much as they want me to be able to do, etc

all this is in IMHO; my past comments have elicited both praise and considerable criticism; the benefit of this forum, for me, is not specific answers but the picture they all draw together of the wide range of possible responses, reactions and outcomes

[jrnyc]

i do not fear the surgery...being on the table does not inspire fear in me...
it is afterwards that worries me...
i know there is much pain, much healing the body must do, much work...

what i fear is trading old pain for new...trading current pain for different, but just as bad (if not worse) pain...
since no surgeon will guarantee a pain free result (after healing is complete)...especially with this surgery...i cannot count on being pain free afterwards...
i have heard pain management doctors, who universally seem to be against this surgery, tell me "If you want to do this to get rid of pain...DON'T! Only do it to prevent progression of the curves." i take what they say with a grain of salt, because many seem to have almost an innate prejudice against scoli surgery...but it doesn't help hearing it!

so...every time i decide to go thru with fusion from T11-pelvis (revised from T4-pelvis), with disc cleaning as well, i then change my mind....

jess

[KathK]

How are the 2010 summer folks doing?

Hi,

I have been wondering how the folks who had surgery last summer are doing? I remember there were quite a few who had surgery in June of 2010...the four J's plus others.

My 1 year anniversary is approaching and I am curious how other "yearlings" are doing!
Kathy