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

[susancook]

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]

When I was in ICU on heavy meds, visitors came down and I don’t remember them coming at all. I asked them not to come as I knew it didn’t 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 isn’t 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 don’t want to get into a car accident especially in the first few weeks, that’s a disaster. I didn’t 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. It’s the best scoliosis transportation vehicle. (smiley face)

Ed

[susancook]

When I was in ICU on heavy meds, visitors came down and I don’t remember them coming at all. I asked them not to come as I knew it didn’t 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 isn’t 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 don’t want to get into a car accident especially in the first few weeks, that’s a disaster. I didn’t 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. It’s 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]

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]

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]

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]

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]

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]

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]

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]

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]

Pain vs curve size

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]

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]

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 don’t have to operate if they don’t 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, it’s the bottom line. If you have more than one surgeon rejecting surgery, then that’s 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 wasn’t there. I don’t 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 “It will help” that really stuck in my mind. I called back and said “let do it”. I finally gave in and was ready.

It turned out to be a good decision.
Ed

[jrnyc]

thanks Ed...
sent you PM

jess