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View Full Version : Rough Timetable estimates for how you feel postop....66 YO with probable T3 to Sacrum



susancook
11-22-2012, 09:46 PM
I have been in denial for a year and somehow figured that my diagnosis of scoliosis at 65 [Adult Onset Degenerative] would majically get better or just stop progressing...

So now, I am going back for my one year visit next month and fear the progression [I certainly tilt more to the R and my shoulder is lower and I have noticed my hip much more uneven...I am generally healthy, weight about 15#s more than it should be [actually, if I hadn't shrunk 2.5" I might be close to OK weight].

Just ballpark estimates of LIFE AFTER A T3 to SACRUM fixation at 66. I know that everyone is different and I will be older than most of the people on the blog, but just an estimate of how I might feel at different times.

SO AFTER SURGERY: When did you start to feel OK and really wanted visitors? Was there a point early on that many people regret that they had surgery, but then weeks later just knew that was how most people felt? When did you feel like going out of the house? When did you want to travel on an airplane for a vacation? When could you take short walks outside of the house? When did you want to travel by car for 5-6 hours?

Thanks, Susan

titaniumed
11-23-2012, 12:57 AM
When I was in ICU on heavy meds, visitors came down and I donít remember them coming at all. I asked them not to come as I knew it didnít make much sense since I was going to be under the effects of extremely strong IV medications. Its nice to be able to interact with your visitors. After I was moved to my room, then I noticed all the visitors. When you are in ICU on the strong stuff, there is NO pain, and the mind is pretty much shut down. I did not dream or hallucinate.

Not once did I EVER regret having my surgeries. I knew all along that I basically had no choice, my pain was maxed too long, and from the point of my surgeries it was a fresh start and was going to make the best of the situation as it came. I always knew that recovery would be tough, and I would get through it.....A combination of knowledge, faith, and guts. I knew that my surgeons could pull it off, and also made them think about my case for a few years.....they knew I would be back, it was a matter of time. When you have no choice in the matter, I think this is the only way to handle this mentally. You cant walk in there with a bad attitude, you just cant. If your mind isnít set, your not ready. Determination to succeed is paramount.

I was walking outside about 2 days after I was home....The PT girl was also coming out to my house every day pushing me....I would only get in the car to go see my surgeon....and was afraid of having an accident in the car. You donít want to get into a car accident especially in the first few weeks, thatís a disaster. I didnít fly for 16 months.

When I resumed driving after being off all meds at 6 weeks, I would drive 1 mile. That was about it. Its not the most comfortable thing to be driving around in a car, even with a few pillows. A Cadillac with heated seats versus a sports car will determine how far you will travel and when. I bought my 1st RV 11 years ago and the captains seats are great. It really is a great mode of transportation since you can lay down any time you wish. Itís the best scoliosis transportation vehicle. (smiley face)

Ed

susancook
11-23-2012, 01:58 AM
When I was in ICU on heavy meds, visitors came down and I donít remember them coming at all. I asked them not to come as I knew it didnít make much sense since I was going to be under the effects of extremely strong IV medications. Its nice to be able to interact with your visitors. After I was moved to my room, then I noticed all the visitors. When you are in ICU on the strong stuff, there is NO pain, and the mind is pretty much shut down. I did not dream or hallucinate.

Not once did I EVER regret having my surgeries. I knew all along that I basically had no choice, my pain was maxed too long, and from the point of my surgeries it was a fresh start and was going to make the best of the situation as it came. I always knew that recovery would be tough, and I would get through it.....A combination of knowledge, faith, and guts. I knew that my surgeons could pull it off, and also made them think about my case for a few years.....they knew I would be back, it was a matter of time. When you have no choice in the matter, I think this is the only way to handle this mentally. You cant walk in there with a bad attitude, you just cant. If your mind isnít set, your not ready. Determination to succeed is paramount.

I was walking outside about 2 days after I was home....The PT girl was also coming out to my house every day pushing me....I would only get in the car to go see my surgeon....and was afraid of having an accident in the car. You donít want to get into a car accident especially in the first few weeks, thatís a disaster. I didnít fly for 16 months.

When I resumed driving after being off all meds at 6 weeks, I would drive 1 mile. That was about it. Its not the most comfortable thing to be driving around in a car, even with a few pillows. A Cadillac with heated seats versus a sports car will determine how far you will travel and when. I bought my 1st RV 11 years ago and the captains seats are great. It really is a great mode of transportation since you can lay down any time you wish. Itís the best scoliosis transportation vehicle. (smiley face)

Ed

Thanks Ed. My lumbar stenosis is really painful. I've had 2 steroid inj, but they don't last long. I think that the S... has hit the fan for me.
Susan

JenniferG
11-23-2012, 03:29 AM
I have been in denial for a year and somehow figured that my diagnosis of scoliosis at 65 [Adult Onset Degenerative] would majically get better or just stop progressing...

So now, I am going back for my one year visit next month and fear the progression [I certainly tilt more to the R and my shoulder is lower and I have noticed my hip much more uneven...I am generally healthy, weight about 15#s more than it should be [actually, if I hadn't shrunk 2.5" I might be close to OK weight].

Just ballpark estimates of LIFE AFTER A T3 to SACRUM fixation at 66. I know that everyone is different and I will be older than most of the people on the blog, but just an estimate of how I might feel at different times.

SO AFTER SURGERY: When did you start to feel OK and really wanted visitors? Was there a point early on that many people regret that they had surgery, but then weeks later just knew that was how most people felt? When did you feel like going out of the house? When did you want to travel on an airplane for a vacation? When could you take short walks outside of the house? When did you want to travel by car for 5-6 hours?

Thanks, Susan

I'm fused T4 to pelvis. I was almost 58 when I had surgery. Like Ed, while in Intensive Care, I had no pain. I had two epidurals. I felt vaguely uncomfortable but the desire to sleep overcame the discomfort and I slept most of the time. I was in my room next morning and it was several days before they removed the epidurals and another 1-2 days before the pain came. By then I was on oral meds which, when they worked, I had no pain whatsoever, but when they wore off, which they always did before the next ones were due, I felt like my entire body was in pain.

The day after I came home, I started walking to the corner of our short street and increased my distance every day. I had visitors once I came home but only for short periods because I was sleeping all the time. Sitting was uncomfortable, so I lay on the sofa when visitors came. I didn't drive until about 10-12 weeks, by which time I was off all medication. From 3-6 months my recovery was rapid. At 6 months I went on a 17 day holiday to Tioman Island, off Malaysia, with my girlfriend, a flight of, I think, about 8 - 8.5 hours. I swam, snorkeled and trekked up and down small mountains. My surgeon said I could lift a 10 kilo suitcase. When I came home, I pulled out about 150 potted bromeliads from the garden and repotted them. I felt great. But improvements, particularly in flexibility, continued up to 12 months, and, more slowly up to 2 years. Some aspects of my recovery were slow, but others, rapid. For example, we didn't really get my pain under proper control until 19 days so I was 19 days in hospital. I was slower than most getting off meds. But I was back to a normal life fairly quickly. For me, there were rapid improvements in that period 3 - 6 months, once I was off medication.

From reading this forum for about 4 years, I don't think any two of us have had the same recovery, so each of us can only give our own example. But I remember being pre-op and reading as much as I could about the recovery period so I had an idea of what to expect, so I hope this has helped.

jrnyc
11-23-2012, 11:03 AM
i would be surprised if a surgeon recommended
surgery on a 36 degree curve...
am wondering if he could suggest any tx short of surgery that you haven't
tried yet....
good luck with your doctor visit...

jess

LindaRacine
11-23-2012, 12:22 PM
i would be surprised if a surgeon recommended
surgery on a 36 degree curve...
am wondering if he could suggest any tx short of surgery that you haven't
tried yet....
good luck with your doctor visit...

jess

Jess...

Curve magnitude only really counts for a lot in kids. For adults, because of degeneration, and the havoc in can case, curve magnitude can be irrelevant.

--Linda

jrnyc
11-23-2012, 12:46 PM
hmmmmm...i am not doubting pain...
i am saying every surgeon i consulted with told me they look
for curves above 45 degrees....
that included Boachie....and Neuwirth....
if they have changed their requirements for FUSION surgery....it has not
been apparent here on east coast...
i do not know what insurance companies have to say....
since they like to fight over things like BMP...i wonder what they
say about curves that are RELATIVELY smaller...

jess

Pooka1
11-23-2012, 01:13 PM
Hey Jess,

Dr. Hey fuses some smaller curves for pain based on his blog. He also may be following his "stitch in time saves nine" rule that he mentions often. I suspect he might actually has a lower limit for fusion that most other surgeons because he has seen so much damage from lack of treatment that he might feel could have been avoided if the person was fused years earlier. All the collapsing spine cases would seem to argue for a lower surgical trigger. I obviously don't know what he actually thinks, though... that just my sense from reading his blog.

He also explained why some smaller curves can cause a lot of pain if there is a trunk shift. The OP is out of balance and that may account for why she has some much pain and damage with only a 36* curve. If PT fails, and meds get to be too much, there is no other option to hope to avoid pain other than surgery as far as I know.

golfnut
11-23-2012, 09:24 PM
Susan,
I know we talked on the phone some time ago, so this may be repetitive. I was fused T4 to the sacrum at age 60. I never once regretted having surgery. While it's not an easy surgery or recovery, it was better than I had anticipated. I know that's not the case for everyone and feel extremely fortunate. I have vague memories of my visitors in the hospital, but still didn't mind that they came to see me. I'm sure I was incoherent. I had visitors at the house soon after being in the hospital for a week, but no one overstayed their visit. The weather was terrible for the first month or so after my surgery, so most of my walking was boring laps through the house and occasional trips to the Y to use the indoor track. I went to a Super Bowl party at about 3 weeks for an hour. At 5 weeks, I started feeling well enough to go with my husband to lunch several days a week. It was unbelievable mental therapy for me to get out and see people. Boy, oh, boy, did the compliments I was hearing help with my recovery. I think I was about 7 weeks post op before we started going out to dinner, which was a longer evening than our 30 minute lunches. I always tried to have a positive attitude and keep in mind that whatever discomfort I had (mainly abdominal) was temporary and that I would continue to improve each month. My forum buddies were a tremendous source of information and support.

loves to skate
11-25-2012, 06:41 PM
i would be surprised if a surgeon recommended
surgery on a 36 degree curve...
am wondering if he could suggest any tx short of surgery that you haven't
tried yet....
good luck with your doctor visit...

jess

Jess, I was in so much pain that Dr. Rand never even measured my curve.
Sally

loves to skate
11-25-2012, 06:51 PM
Susan, I was 67 when I had my surgery. I was up and walking with a cane two days after surgery - If you can call that walking. When I got home I did a lot of sleeping, but every day I walked around the house and I was ready for visitors anytime. The pain was well controlled and by three months, I was weaned off of the oxy, so I could drive. If I had a job, I probably would have been able to go back to work part time. We are all so different in our tolerance to pain, how we react to the meds, how well we can sleep and how fast we heal. We flew to Seattle at eight months post - op and went to a Seattle - Red Sox baseball game while there. You will be in my thoughts and prayers. Are you back from Fiji? How was it?
Take care, Sally

SpineTime
11-25-2012, 08:33 PM
Jess...

Curve magnitude only really counts for a lot in kids. For adults, because of degeneration, and the havoc in can case, curve magnitude can be irrelevant.

--Linda

Jess, I can vouch for what Linda & others have said. Curve size matters more with kids/teens than adults.

I just had a 1-year followup visit with Dr. Ganocy, in Los Angeles, the surgeon who will do my surgery (unless my insurance changes by the time I actually decide to have surgery!). In his opinion, my curve is only 38 or 39 degrees (I need to change the info. in my signature line that says my curve is 46-51 degrees - that was the opinion of a surgeon with less experience & it may not be accurate).

Dr. G said, in my case, the curve size is not the indication for surgery. The indication for surgery, for me, is severe pain that hasn't been relieved through conservative treatments. The fact that my curve isn't huge and/or rapidly progressing doesn't change that fact. It just sorta makes it less obvious that surgery should be done. In other words, you don't look at my x-ray and think "Wow, this person *really* needs surgery!" At least that's how I interpreted it.

BTW, I found out at this last visit that Dr. Ganocy was trained by Dr. Boachie. I wonder if they disagree about this? I have no idea.

jrnyc
11-25-2012, 11:14 PM
then you haven't met the surgeons who will NOT offer surgery despite
severe pain...?
because i have....and i know of others on forum who have....
they reject surgery...but do not offer another solution...

jess

titaniumed
11-26-2012, 08:24 PM
Jess

There are reasons for surgeons to simply decline.....your right, we have seen this happen here, and who knows what the reasoning might be, they donít have to operate if they donít want to. 0 or 150 degrees. That means its time to move on.

Surgeons have to be brave also....Some of us heavies can walk in there and scare the heck of them. They have to believe that they can help, itís the bottom line. If you have more than one surgeon rejecting surgery, then thatís a signal that the door is slamming shut. On the discovery channel program about scoliosis when Dr Boachie is operating on Juma, he mentions in the middle of the surgery that there are times he wishes he wasnít there. I donít know if you saw that program, of course I would think it was excellent. I watched it around 10 times. Juma had huge curves......it was bad.

I think its important to simply ask if surgery will help. After I heard the words ďIt will helpĒ that really stuck in my mind. I called back and said ďlet do itĒ. I finally gave in and was ready.

It turned out to be a good decision.
Ed

jrnyc
11-26-2012, 09:35 PM
thanks Ed...
sent you PM

jess

SpineTime
11-27-2012, 03:58 PM
On the discovery channel program about scoliosis when Dr Boachie is operating on Juma, he mentions in the middle of the surgery that there are times he wishes he wasnít there. I donít know if you saw that program, of course I would think it was excellent. I watched it around 10 times. Juma had huge curves......it was bad.

Ed, do you happen to know of any way I could view this program? I was hoping I might be able to watch it online, but I guess not. Maybe the Discovery Channel has it for sale. I'll have to look more on their website, or hope they air it again someday. There was an HBO documentary called "Making the Crooked Straight." Have you seen it? You would probably like it. It's about a doctor in Ethiopia who helps people there, and some of them have TB of the spine, which can cause terrible deformities.

titaniumed
11-27-2012, 08:38 PM
Itís the ďSurgery saved my lifeĒ series.

Once again, I have looked and looked. The only thing thatís out there are the small vid previews.
http://dsc.discovery.com/tv-shows/other-shows/videos/surgery-saved-my-life-jumas-spine.htm

The next time it comes on television, one of us will need to record this. I had it on DVR, but when you surrender your box, you lose programming.

I donít have cable or satellite so one of you guys needs to keep a watch on the schedule.....If I know its going to be on again, I will make sure it gets recorded.

I have not seen ďMaking the crooked straightĒ I will check into that...

My computer is being problematic right now and needs some maintenance.

Ed

SpineTime
11-28-2012, 03:56 PM
Itís the ďSurgery saved my lifeĒ series.

Once again, I have looked and looked. The only thing thatís out there are the small vid previews.
http://dsc.discovery.com/tv-shows/other-shows/videos/surgery-saved-my-life-jumas-spine.htm

The next time it comes on television, one of us will need to record this. I had it on DVR, but when you surrender your box, you lose programming.

I don’t have cable or satellite so one of you guys needs to keep a watch on the schedule.....If I know its going to be on again, I will make sure it gets recorded.

I have not seen ďMaking the crooked straightĒ I will check into that...

My computer is being problematic right now and needs some maintenance.

Ed

Darn! I can't even watch the preview. I click on the link and it says it's Juma's surgery, but then when I click on play, it changes to Sky's surgery and starts showing that. Thank you for looking though.

Here's the link for Making the Crooked Straight: http://www.makingthecrookedstraight.org/about-the-film

Irina
11-28-2012, 04:26 PM
When did you, guys, stop using special devices? Let's say, when did you ditch toilet riser and bottom buddy (if you used those)? When did you stop using shower chair, sock aid, dressing stick etc? I understand that everyone is different, but just want to know a ballpark.

When you graduated from those *tools*, did you have a wild party? :-) How did you know that it's graduation time? Did your doctors tell you to use these *toys* for x-amount of time, or you just stopped using them when you felt it's no longer needed?

susancook
12-07-2012, 05:05 AM
i would be surprised if a surgeon recommended
surgery on a 36 degree curve...
am wondering if he could suggest any tx short of surgery that you haven't
tried yet....
good luck with your doctor visit...

jess

I have adult degenerative scoliosis. Curves that start in adulthood (60's) are treated differently that those of younger folks and can be extremely painful since there is that pain from many sources: scoliosis, DDD, arthritis, etc.

I have had 2 years of PT, steroid injections, denervations. Right now, I have severe back pain, so I will close and curl up on my bed.
Susan

jrnyc
12-07-2012, 10:43 AM
i too have scoli, DDD, arthritis, listhesis, stenosis...etc etc
as do many here on forum

sometimes adult scoli turns out to be undiagnosed in childhood...
regardless, age seems to bring DDD and arthritis to many people, or so all my
doctors tell me...especially older doctors who experience it themselves!

jess

titaniumed
12-07-2012, 12:10 PM
When did you, guys, stop using special devices? Let's say, when did you ditch toilet riser and bottom buddy (if you used those)? When did you stop using shower chair, sock aid, dressing stick etc? I understand that everyone is different, but just want to know a ballpark.

When you graduated from those *tools*, did you have a wild party? :-) How did you know that it's graduation time? Did your doctors tell you to use these *toys* for x-amount of time, or you just stopped using them when you felt it's no longer needed?

I never had a ďbuddyĒ.....He he. Never used a shower chair either, but sounds like a good idea.

The sock aid was around 8 months. I started using a stool for the graduation process, which involves light stretching and reaching. Just getting the sock started on the toes can be a challenge in the beginning. I used the stool for a few months after that and then started to squat down on the floor to get the sock on. I have no problems with the sockís and tying shoes now. Stretching with a full fusion is a slow process.....and had a major pain event at 22 months, soft tissue injury from stretching trying to clip my toe nails.

I knew that I shouldnít bend or twist for a long time, and didnít because its hard to know if you are fused. I was around 6 or 7 months and my surgeon told me Iím fused so, felt a little better about that, but still took it easy.

No late night wild parties anymore.....the old man cant handle it. I have to start the party at 8AM. (leafy green party, of course)

Alcohol is of no benefit with scoliosis.....I have done the research. It does nothing for incapacitating back pain, stenosis, radiculitis, sciatica. I would chase whiskey with equal amounts of water to try to prevent dehydration....

The process with the aids is a trial and error kind of thing....

Ed

susancook
12-07-2012, 08:03 PM
Susan, I was 67 when I had my surgery. I was up and walking with a cane two days after surgery - If you can call that walking. When I got home I did a lot of sleeping, but every day I walked around the house and I was ready for visitors anytime. The pain was well controlled and by three months, I was weaned off of the oxy, so I could drive. If I had a job, I probably would have been able to go back to work part time. We are all so different in our tolerance to pain, how we react to the meds, how well we can sleep and how fast we heal. We flew to Seattle at eight months post - op and went to a Seattle - Red Sox baseball game while there. You will be in my thoughts and prayers. Are you back from Fiji? How was it?
Take care, Sally

I am back in Fiji after 2weeks in Papua New Guinea distributing mosquito nets with Rotarians Against Malaria. I leave next week for the US. This has been an awesome trip but my back pain is increasing. It has been fairly pain free for the first 1.5 months, but the corticosteroids have worn off. I have an appt to see Dr. Hart on the 18th. I am looking forward to learning the state of my back, which I imagine has grossly increased in degeneration. Thanks for your kindness. I will let you know how the appt goes.
Bula, Susan

susancook
12-07-2012, 08:20 PM
hmmmmm...i am not doubting pain...
i am saying every surgeon i consulted with told me they look
for curves above 45 degrees....
that included Boachie....and Neuwirth....
if they have changed their requirements for FUSION surgery....it has not
been apparent here on east coast...
i do not know what insurance companies have to say....
since they like to fight over things like BMP...i wonder what they
say about curves that are RELATIVELY smaller...

jess

Jess, the number of the curve is not as relevant for us old folks. The requirements for fusion have not changed for the adult degen folks. There does not seem to be a magic number. Just the total of all of the degen processes. My ins co covers this for my diagnosis. Susan

jrnyc
12-07-2012, 08:44 PM
that is not what i have been told by any of the surgeons i have seen...top surgeons.
and the idea of not having surgery to eliminate pain was explained to me
as "there is no guarantee you won't have pain after healing"
even though most surgeons hope the pain will be less...
they emphasized the reason for surgery to be stopping progression....
not because of pain or no pain.
i am quite aware of what age can do to scoliosis...
i did not have problems with my scoliosis til i got older...
but age can do damage to even a healthy spine as well

a survey of scoli patients anywhere will indicate how often the numbers
"45-50 degree curves" was mentioned in the surgeons' offices...
otherwise called "within surgical range"
this is not something i am imagining...enuf people on forum have referred
to those numbers as well...

jess

susancook
12-07-2012, 09:05 PM
that is not what i have been told by any of the surgeons i have seen...top surgeons.
and the idea of not having surgery to eliminate pain was explained to me
as "there is no guarantee you won't have pain after healing"
even though most surgeons hope the pain will be less...
they emphasized the reason for surgery to be stopping progression....
not because of pain or no pain.
i am quite aware of what age can do to scoliosis...
i did not have problems with my scoliosis til i got older...
but age can do damage to even a healthy spine as well

a survey of scoli patients anywhere will indicate how often the numbers
"45-50 degree curves" was mentioned in the surgeons' offices...
otherwise called "within surgical range"
this is not something i am imagining...enuf people on forum have referred
to those numbers as well...

jess

The medical literature on adult degen says that the reason for adult surgery is: pain and/or compromised lung or heart function and/or a curve that increases 5 degrees or more in a year. There does not seem to be a specific number. I don't think that East Coast and West Coast are different. There is a great article in a major book on scoliosis written by Dr. Hu on adulthood degen scoliosis. I went up to the Oregon Health Scciences library and the research opinions for surgical correction agreed with all that I understand and as Dr. Hart has explained.

Sorry that this is so frustrating for you and that you cannot find a way to relieve your discomfort.
Susan

Pooka1
12-07-2012, 09:33 PM
It certainly appears that there are different criteria for IS versus adult degenerative.

In IS, the curve causes or accelerates the damage and in adult degenerative, the damage causes the curve. So it seems there might be more damage per degree of curvature in adult degenerative as compared to IS and so the idea would be "stitch in time" with something that is already around the bend on damage. In IS, the damage seems more tied to curvature and thus that might have a higher surgical trigger compared to adult degenerative. Just guessing here.

jrnyc
12-07-2012, 10:26 PM
susan, i do NOT have a problem finding a solution...
what is frustrating is not the answers...it is that the answers are limited...
all of the top surgeons i have consulted since 2007 have recommended
surgery for me...
it is i who have decided not to have it...so far....
pain management without steroid shots is limited, though my doctor
does what he can for me...

i do know of a surgeon who seems to consider leg pain a top indicator
of whether or not to do the surgery...
but he is the only one whom i ever heard of who worried about that
qualification...
all the surgeons i saw...including Boachie and Neuwirth and Anand...
primarily worried about progression...how far the patient...me...had
ALREADY progressed...as well as how much worse it might get...

and lumbar curves do not cause heart or lung worries...
if that were the criteria, no one with lumbar curves would have the surgery....

Sharon, my adult scoli was not found early enuf, but i am sure it was there
by my teen years....

jess

rohrer01
12-07-2012, 11:59 PM
I understand what Sharon is saying. However, being one who upon aging is developing more and more debilitating pain, I would have to consider that as we age the standards should be more similar whether it is IS or adult onset. The degeneration is there, whether the scoli caused the degeneration or the degeneration caused the scoli. It's what some may consider the "chicken or the egg" scenario. In both cases there are both curves and degeneration. Whether surgery would help in my particular case is unknown since much of my pain is muscular. Although I do have numbness, tingling and shocking pains that radiate. These latter symptoms are not consistent, or at least I can't figure out the pattern correlating activity with symptoms on many of my symptoms (some I can). It is incredibly frustrating.

Susie*Bee
12-08-2012, 11:08 AM
I have been in denial for a year and somehow figured that my diagnosis of scoliosis at 65 [Adult Onset Degenerative] would majically get better or just stop progressing...

So now, I am going back for my one year visit next month and fear the progression [I certainly tilt more to the R and my shoulder is lower and I have noticed my hip much more uneven...I am generally healthy, weight about 15#s more than it should be [actually, if I hadn't shrunk 2.5" I might be close to OK weight].

Just ballpark estimates of LIFE AFTER A T3 to SACRUM fixation at 66. I know that everyone is different and I will be older than most of the people on the blog, but just an estimate of how I might feel at different times.

SO AFTER SURGERY: When did you start to feel OK and really wanted visitors? Was there a point early on that many people regret that they had surgery, but then weeks later just knew that was how most people felt? When did you feel like going out of the house? When did you want to travel on an airplane for a vacation? When could you take short walks outside of the house? When did you want to travel by car for 5-6 hours?

Thanks, Susan
You are so right that everyone is different! I was one that took longer to get back to feeling ok. I was in the hospital for 11 days, and other than my husband, my daughter and her husband, there is no way I would have wanted anyone there... After I came home a few people came to visit, but it was very tiring to have them come, although a nice gesture. They need to limit their time.

I had been told that for the first 6 weeks you would/could regret the surgery. I probably didn't want to go out, other than to walk, for about a month-- but we live in the country and it's a good half an hour to a store. At 5 months I traveled by plane to see my daughter in New Hampshire (from Indiana). The trip was a little difficult, but I did it. (smile) Long trips in a car were difficult, but by one year we were able to take a road trip to New Hampshire, stopping every few hours to stretch and rest. I was still a bit tired and sore, but ok.

At one year, I thought I was "all healed" and would live with how I was. Then I was surprised at how much better I was at two years post-op. Again at 3 years. I continue to get stronger and better with each year. Some of us take longer to get better. I spent most of my first year intensely doing all I could to work at gaining back my strength because I had become very weakened by the surgery and wasn't able to return to my active job at school. I would spend (after 6 months, when I got the "all clear" from my doctor) 2-3 hours a day walking and doing PT exercises to build up my arm and leg muscle strength. At 11 months he let me work on core muscle strength, sending me again to a P. therapist for 8 weeks and I continued doing those exercises after my time there was over. Some people don't seem to get weak like that, but I did. It may be because of the osteotomies and my general condition, although I always thought I was fairly strong. Oh well-- it's beside the point. I ended up taking a year off from my job and it was ok. I am doing well now and just have some general limitations-- no bending, twisting, or lifting things a little over 20 lbs., but that's because my lower 2 vertebrae weren't fused and we are trying to save them from having problems.

I used my shower seat for at least 3-4 months, with one of those shower wands. Same time span with the raised toilet seat with handles. The handles were great in helping me get up. My legs just were too weak on their own. I never needed a "buddy" although it was a bit difficult... I actually didn't celebrate-- was kind of sad to see them go, but knew it was time. The doctor had nothing to do with it. I still use a sock aid because my legs are long in proportion to my torso and it's such a stretch for me and second nature to use the aid. No big deal.

Best wishes. As time goes by you will get better and better. (smile)

Irina
12-08-2012, 05:12 PM
You are so right that everyone is different! I was one that took longer to get back to feeling ok. I was in the hospital for 11 days, and other than my husband, my daughter and her husband, there is no way I would have wanted anyone there... After I came home a few people came to visit, but it was very tiring to have them come, although a nice gesture. They need to limit their time.

I had been told that for the first 6 weeks you would/could regret the surgery. I probably didn't want to go out, other than to walk, for about a month-- but we live in the country and it's a good half an hour to a store. At 5 months I traveled by plane to see my daughter in New Hampshire (from Indiana). The trip was a little difficult, but I did it. (smile) Long trips in a car were difficult, but by one year we were able to take a road trip to New Hampshire, stopping every few hours to stretch and rest. I was still a bit tired and sore, but ok.

At one year, I thought I was "all healed" and would live with how I was. Then I was surprised at how much better I was at two years post-op. Again at 3 years. I continue to get stronger and better with each year. Some of us take longer to get better. I spent most of my first year intensely doing all I could to work at gaining back my strength because I had become very weakened by the surgery and wasn't able to return to my active job at school. I would spend (after 6 months, when I got the "all clear" from my doctor) 2-3 hours a day walking and doing PT exercises to build up my arm and leg muscle strength. At 11 months he let me work on core muscle strength, sending me again to a P. therapist for 8 weeks and I continued doing those exercises after my time there was over. Some people don't seem to get weak like that, but I did. It may be because of the osteotomies and my general condition, although I always thought I was fairly strong. Oh well-- it's beside the point. I ended up taking a year off from my job and it was ok. I am doing well now and just have some general limitations-- no bending, twisting, or lifting things a little over 20 lbs., but that's because my lower 2 vertebrae weren't fused and we are trying to save them from having problems.

I used my shower seat for at least 3-4 months, with one of those shower wands. Same time span with the raised toilet seat with handles. The handles were great in helping me get up. My legs just were too weak on their own. I never needed a "buddy" although it was a bit difficult... I actually didn't celebrate-- was kind of sad to see them go, but knew it was time. The doctor had nothing to do with it. I still use a sock aid because my legs are long in proportion to my torso and it's such a stretch for me and second nature to use the aid. No big deal.

Best wishes. As time goes by you will get better and better. (smile)

Susie,

This is a very helpful and detailed response. I hear different things about whether to use or not to use a shower seat, but it seems like it could be good idea to buy it just in case. Thank you!

Susie*Bee
12-08-2012, 06:34 PM
Glad to be of help. Regarding the shower seat-- it used to just wipe me out to take a shower and I would need to rest afterward. Having the seat to sit on was so helpful, plus, just in case you got dizzy or weak-- there you were, fairly safely seated. (smile...) I really can't imagine trying to shower standing up at the beginning, although I know some people have no problem.

golfnut
12-08-2012, 06:39 PM
I had no problems standing up in the shower, however, in hindsight, I would advice the seat. I blacked out briefly at 3 weeks post-op, but not in the shower. I think it would be wise to use the seat until you are off the heavy meds.

leahdragonfly
12-08-2012, 06:49 PM
Just my 2 cents worth---I used the shower seat for about two showers, but found it made the shower actually more difficult and less pleasing. I had no trouble at all standing in the shower, and it was just heavenly (but definitely exhausting the first couple of weeks).

I never needed a wiping aid. I did appreciate the raised toilet seat for maybe 6 weeks (?) after my first surgery (T8-sacrum/pelvis). I used a grabber stick, but that was the only aid I used.

I could not put on my own socks for awhile, until I devised another way to do it. I never did use a sock or shoe aid.

My husband visited the hospital every day of course, and one other close friend who had scoli surgery last year came by for a brief visit. I was happy to see her but probably only able to visit for about 10 minutes tops. I did not feel up to any other friends while hospitalized. I would have LOVED to see my kids, but they were at home 2 hours away. This motivated me to leave the hospital one day early, because I missed them just so much.

Once at home I had a couple of visits from my Mom and Dad, but I tired very quickly. My Mom wasn't super helpful unfortunately so it was kind of draining to have her. She really didn't understand how quickly I tired and needed to lay down to rest. Friends that come by and just sit with you during some TV, or who bring you a light meal and don't overstay, those would be welcome visitors. But everyone is different in the level of social stimulation they desire when not feeling well.

I definitely regretted the surgery deeply the first two weeks. The first 2 weeks are just so rough, and you will not feel well. I have to admit I absolutely hated my new posture and my newly lost mobility. Over time I improved, and grew to accept (but never love) how my new back felt. There is not a day goes by that I wish I didn't HAVE to be fused, but I did have to, and I now appreciate having a back that is getting closer and closer to pain-free. I will never love the feeling of being fused though. The loss of mobility does really bother me. Many others here don't seem to mind.

I experienced significant improvements around the 12 day mark, 4 weeks, 4 months, 6 months, 9 months, and one year. I broke my rods and had my big revision at 15 months post-op, at a time that my back had been feeling really good, so of course that was a very significant set-back. Now I am 9 months post-op revision, and definitely I'm still improving. I take tylenol usually once a day now and that is it.

Your other questions: going outside for short walks, the day after getting home. Make sure you aren't alone, and don't fall! Going out for short outings (like to Market of Choice for a sandwich), 3-4 weeks. Riding in the car for one hour in reasonable comfort, ~6-8 weeks. I drove our family 6 hours for camping at 6 months post-op (both surgeries), and it wasn't great, but tolerable with meds.

Best of luck with your upcoming visit to Dr H.

susancook
12-08-2012, 11:44 PM
You are so right that everyone is different! I was one that took longer to get back to feeling ok. I was in the hospital for 11 days, and other than my husband, my daughter and her husband, there is no way I would have wanted anyone there... After I came home a few people came to visit, but it was very tiring to have them come, although a nice gesture. They need to limit their time.

I had been told that for the first 6 weeks you would/could regret the surgery. I probably didn't want to go out, other than to walk, for about a month-- but we live in the country and it's a good half an hour to a store. At 5 months I traveled by plane to see my daughter in New Hampshire (from Indiana). The trip was a little difficult, but I did it. (smile) Long trips in a car were difficult, but by one year we were able to take a road trip to New Hampshire, stopping every few hours to stretch and rest. I was still a bit tired and sore, but ok.

At one year, I thought I was "all healed" and would live with how I was. Then I was surprised at how much better I was at two years post-op. Again at 3 years. I continue to get stronger and better with each year. Some of us take longer to get better. I spent most of my first year intensely doing all I could to work at gaining back my strength because I had become very weakened by the surgery and wasn't able to return to my active job at school. I would spend (after 6 months, when I got the "all clear" from my doctor) 2-3 hours a day walking and doing PT exercises to build up my arm and leg muscle strength. At 11 months he let me work on core muscle strength, sending me again to a P. therapist for 8 weeks and I continued doing those exercises after my time there was over. Some people don't seem to get weak like that, but I did. It may be because of the osteotomies and my general condition, although I always thought I was fairly strong. Oh well-- it's beside the point. I ended up taking a year off from my job and it was ok. I am doing well now and just have some general limitations-- no bending, twisting, or lifting things a little over 20 lbs., but that's because my lower 2 vertebrae weren't fused and we are trying to save them from having problems.

I used my shower seat for at least 3-4 months, with one of those shower wands. Same time span with the raised toilet seat with handles. The handles were great in helping me get up. My legs just were too weak on their own. I never needed a "buddy" although it was a bit difficult... I actually didn't celebrate-- was kind of sad to see them go, but knew it was time. The doctor had nothing to do with it. I still use a sock aid because my legs are long in proportion to my torso and it's such a stretch for me and second nature to use the aid. No big deal.

Best wishes. As time goes by you will get better and better. (smile)

Susie, thanks for your response. It was very encouraging for me and I need encouragement right now. I am both looking forward to seeing my surgeon in 2 weeks and dread what I fear will be his recommendation.
Susan

susancook
12-08-2012, 11:55 PM
Just my 2 cents worth---I used the shower seat for about two showers, but found it made the shower actually more difficult and less pleasing. I had no trouble at all standing in the shower, and it was just heavenly (but definitely exhausting the first couple of weeks).

I never needed a wiping aid. I did appreciate the raised toilet seat for maybe 6 weeks (?) after my first surgery (T8-sacrum/pelvis). I used a grabber stick, but that was the only aid I used.

I could not put on my own socks for awhile, until I devised another way to do it. I never did use a sock or shoe aid.

My husband visited the hospital every day of course, and one other close friend who had scoli surgery last year came by for a brief visit. I was happy to see her but probably only able to visit for about 10 minutes tops. I did not feel up to any other friends while hospitalized. I would have LOVED to see my kids, but they were at home 2 hours away. This motivated me to leave the hospital one day early, because I missed them just so much.

Once at home I had a couple of visits from my Mom and Dad, but I tired very quickly. My Mom wasn't super helpful unfortunately so it was kind of draining to have her. She really didn't understand how quickly I tired and needed to lay down to rest. Friends that come by and just sit with you during some TV, or who bring you a light meal and don't overstay, those would be welcome visitors. But everyone is different in the level of social stimulation they desire when not feeling well.

I definitely regretted the surgery deeply the first two weeks. The first 2 weeks are just so rough, and you will not feel well. I have to admit I absolutely hated my new posture and my newly lost mobility. Over time I improved, and grew to accept (but never love) how my new back felt. There is not a day goes by that I wish I didn't HAVE to be fused, but I did have to, and I now appreciate having a back that is getting closer and closer to pain-free. I will never love the feeling of being fused though. The loss of mobility does really bother me. Many others here don't seem to mind.

I experienced significant improvements around the 12 day mark, 4 weeks, 4 months, 6 months, 9 months, and one year. I broke my rods and had my big revision at 15 months post-op, at a time that my back had been feeling really good, so of course that was a very significant set-back. Now I am 9 months post-op revision, and definitely I'm still improving. I take tylenol usually once a day now and that is it.

Your other questions: going outside for short walks, the day after getting home. Make sure you aren't alone, and don't fall! Going out for short outings (like to Market of Choice for a sandwich), 3-4 weeks. Riding in the car for one hour in reasonable comfort, ~6-8 weeks. I drove our family 6 hours for camping at 6 months post-op (both surgeries), and it wasn't great, but tolerable with meds.

Best of luck with your upcoming visit to Dr H.

Thanks so much for your honesty. Your response brought tears to my eyes. I realize that I am angry that my back has betrayed me and at 65, when I thought that retirement and traveling and being active were in my future. This scoliosis thing never entered my mind. I think that I am setting myself up to be disappointed by the surgery no matter the outcome as I am angry that I am in this situation. You have given me permission to be angry and I thank you for sharing your honest feelings. I need to get on with my visit with Dr. H and regain trust in him and his communication.
Again, I appreciate your honesty
Susan....still in Fiji and coming home at the end of the week

leahdragonfly
12-09-2012, 10:38 AM
Hi Susan,

I hope my post wasn't too raw...they are my true feeling about my fusion. I know so many on here say they can't notice much difference in flexibility etc and I just don't see how that could be true. I think because I have had two go-arounds with this surgery now I've had a lot of extra time to ponder it.

In time I accepted my new back (but always hated the loss of flexibility-how could you not?). But, my first surgery involved the rebuilding of lumbar lordosis, something which I had entirely lost, and so having a new, huge amount of lordosis felt really weird. I always felt like it was too much, from the minute I woke up in the ICU. I became accustomed to it by one year, to the point where I did not think about my back at all times. But, when I broke my rods, it was a welcome opportunity for Dr Hart to adjust my saggital balance with an osteotomy and reduce the amount of lordosis. I think my struggle with lordosis complicated my recovery by making me constantly aware that my back felt overly arched. Now my posture feels much more natural, and Dr Hart is very happy with my alignment.

One thing that I was expecting but didn't get was a more cosmetic improvement in stretching out my trunk and waistline. This was very disappointing. I found out from Dr Hart that usually correction is achieved by distraction (stretching the two ends of the curve apart to straighten). However, he found my spine to be unusually flexible and extremely unstable during surgery, which made it very challenging, so he ended up compressing the curve to stabilize it. All very technical but my waist still looks squished and my ribs are very close to my iliac crests.

Overall, at nine months post-op, I am happy, and I know that I still will make a lot of improvement in how my back feels. Right now it feels solid and my pre-op pain is all but gone. I am happy with my outcome overall. But there is no denying it is a very rough ride to get to this point.

I can understand you're feeling angry about your back letting you down. It is such a tough realization that this surgery is going to be unavoidable. It is such a daunting prospect. I am confident you will be in the best of hands with Dr Hart. His clinic days are so busy sometimes, so take a prioritized list of question you need answered. My experience has been he will always answer my questions.

Take care,

loves to skate
12-09-2012, 01:43 PM
Susie,

This is a very helpful and detailed response. I hear different things about whether to use or not to use a shower seat, but it seems like it could be good idea to buy it just in case. Thank you!

Irena, I would hold off on the shower seat or any other personal equipment except maybe a grabber. After your surgery, you will be seen by an OT and she or he will be able to advise you on what you will need. I except the grabber because the one I was sold at the hospital was very flimsy and I know a much stronger one can be purchased at a medical equipment store or even a drug store. Good luck.
Sally

susancook
12-09-2012, 04:34 PM
Hi Susan,

I hope my post wasn't too raw...they are my true feeling about my fusion. I know so many on here say they can't notice much difference in flexibility etc and I just don't see how that could be true. I think because I have had two go-arounds with this surgery now I've had a lot of extra time to ponder it.

In time I accepted my new back (but always hated the loss of flexibility-how could you not?). But, my first surgery involved the rebuilding of lumbar lordosis, something which I had entirely lost, and so having a new, huge amount of lordosis felt really weird. I always felt like it was too much, from the minute I woke up in the ICU. I became accustomed to it by one year, to the point where I did not think about my back at all times. But, when I broke my rods, it was a welcome opportunity for Dr Hart to adjust my saggital balance with an osteotomy and reduce the amount of lordosis. I think my struggle with lordosis complicated my recovery by making me constantly aware that my back felt overly arched. Now my posture feels much more natural, and Dr Hart is very happy with my alignment.

One thing that I was expecting but didn't get was a more cosmetic improvement in stretching out my trunk and waistline. This was very disappointing. I found out from Dr Hart that usually correction is achieved by distraction (stretching the two ends of the curve apart to straighten). However, he found my spine to be unusually flexible and extremely unstable during surgery, which made it very challenging, so he ended up compressing the curve to stabilize it. All very technical but my waist still looks squished and my ribs are very close to my iliac crests.

Overall, at nine months post-op, I am happy, and I know that I still will make a lot of improvement in how my back feels. Right now it feels solid and my pre-op pain is all but gone. I am happy with my outcome overall. But there is no denying it is a very rough ride to get to this point.

I can understand you're feeling angry about your back letting you down. It is such a tough realization that this surgery is going to be unavoidable. It is such a daunting prospect. I am confident you will be in the best of hands with Dr Hart. His clinic days are so busy sometimes, so take a prioritized list of question you need answered. My experience has been he will always answer my questions.

Take care,

I need to find confidence in Dr. H or move on. I sent him questions and he never answered. His PA responded after a while, but just gave me vague answers, not answers to my situation specifically. When I sent back an email asking her to ask Dr. H, she responded weeks later and said to make an appointment to ask my question. By that time, which was 2 months later, I was on my way to Fiji and he did not have any appointments available in the 2 weeks until I left.
I am so confused and frustrated. Susan
Thanks for sharing your honesty. I am beyond fluff and need a wake up call.