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Paul
06-14-2014, 12:21 PM
Hi,
I am a 63 year old male with severe scoliosis. I have been seeing Dr. Frank Rand at New England Baptist in Boston for a few years at one year intervals. He specializes in Scoliosis and Spine surgery. X-ray are taken and he lets me know what has happened. I do not know the degrees of the s shaped curved. Between Nov. 2013 and Feb. 2014 I have lost close to an inch of height. 5'6" to 5'5". My height when in my 20 to 30 year old days was close to 5'9". During the last few months I have had lots of pain in the rib hump like the ribs want to push out more. The rib hump is also more pronounced. It was always there but seems to have enlarged. I have a lot of twisting of my rib cage from left to right so my left pectoral protrudes much more than the right pectoral. My ribs on the right side front are or seem to be making contact with the large bone which I think is part of my hip. When trying to sleep on my right side I am not comfortable as it seems the left side is trying to dig in to what limited space is left between the ribs and hip and the same happens if I try to lay on my left side. Prolong sitting in a chair will aggravate the pain in the rib hump and slouching feels better than trying to sit up straight. Stationary standing will bring about lower back pain. I do not have any difficulty walking but I have noticed my clothing fitting poorly compared to a year ago. Sometimes I feel pins and needles in my left leg from the knee down to my foot. I have had right hip pain, which shoots down the right leg but only as far as the knee, for several years.
Dr. Rand has said each time that I would be worst off than I am now if he was to do the procedure.

Since I am seeing him Thurs. June 19th, what should I be asking or telling him? I notice most of the people responding are posting their curve degrees. Is it important to know these numbers?

Any assistance would be greatly appreciated.

Thanks,
Paul

titaniumed
06-14-2014, 01:59 PM
Dr. Rand has said each time that I would be worst off than I am now if he was to do the procedure.


Paul

Welcome to the forum....

Where do I start? Youíre a scoli, your 63, you have big curves, and you have been rejected. Dr Rand doesnít want to do it and there is a reason.....

It could be a surgical reason, it could be due to the patient, it could be due to insurance, it could be that he is retiring, it could be a whole host of reasons....It happened to me.

You realize that its major invasive surgery, its serious, and things can happen. The complication list is extensive, and we have to be prepared just in case. I was guaranteed 100% that something would go wrong, I was lucky that I lost my gall bladder a year later. I did come out well.

I would buy David Wolpertís scoliosis surgery book and crash it. You can order here at NSF.

You will want to know where he is going to cut. Most scoliosis surgeries are from the back(PLIF) but sometimes they operate from the front, they are called (ALIF). I had an ALIF first, then a PLIF done 2 days later.

It was a 2 year recovery.

Ed

jrnyc
06-14-2014, 04:30 PM
hi Paul
biggest question.....WHY does he recommend you not do
the surgery...????
there has to be a reason...
every scoli surgeon i have seen tells me to have the surgery....
i have not done it...yet....

i would ask why as my first question....that is most
important....why would you not be better off with surgery...
if no one will do the surgery, to me, it does not matter how
the surgery is done, if you cannot have it.

best of luck...
jess...and Sparky

LindaRacine
06-14-2014, 08:25 PM
Hi Paul...

Curve magnitude in adults usually has no bearing on a surgeon's decision about whether surgery is a good option. I work for spine surgeons and can tell you that we see people with very small curves who have a lot of pain and people with huge curves who have no pain. The fact that your ribs are hitting your pelvis is significant, as are your back pain and the fact that you have some nerve pain in your legs.

I think most of the really great scoliosis surgeons are conservative, and don't want to operate unless they're fairly certain that they can make a patient at least somewhat better. However, the decision, in the end, is always up to the patient. If you feel that it's the right time for surgery, you should make Dr. Rand aware of that.

Best of luck with your journey.

Regards,
Linda

susancook
06-16-2014, 01:32 AM
Hi there Paul, first of all, welcome.

I had 2 days of surgery at age 66, the first with an ALIF/XLIF and the second with a PSF. Cliff's notes: first day two incisions one on front and one on side to repair discs from the front/side and day 2, repair of discs from back with fusion of entire back.

Suggestion for question for Dr. Rand: why does he think that you will be worse off if he does surgery?
Bring someone with you for the appointment to take extensive notes, verbatim is best. That person can also ask questions. You take notes too. You could also bring a tape recorder and ask Dr. Rand if it is OK to tape the session " because you want to make that you understand what he says because it is difficult for me to remember what you say even if I try to take notes".

Even if he agrees that surgery might be OK for you, get a second opinion. Not just any opinion, but one from a Scoliosis Society member that operates on adults. Get a third opinion if you need one. That might also be good, especially if the second MD feels that scoliosis surgery would be advisable. Then, you would maybe have 2 different MD choices. If that person does not think surgery is a good choice, why not?
I suggest choosing adult scoliosis surgeons that operate in major university hospitals, SRS members, and maybe even the chair of the department. My biggest fear when I went for my second opinion was that surgeon would say that she would not do surgery. When she agreed that surgery was a good choice, I had 2 choices in surgeons. I went with the one which had the best postop support network.

Ed makes some good points about surgery: everyone that I know that has had major scoliosis surgery had had a problem after surgery. So why have surgery? My thought: have surgery if your present pain and quality of life make living very difficult. Can you do everything or mostly everything that you want to do? Have you tried PT and other non-invasive treatments like rhizotomy, injections, etc.? Aesthetics are not a good reason for surgery.

And like Linda said, curve magnitude is not relevant for surgery consideration in older persons. Mine was 24/36 and had not changed over a year, but my pain and quality of life had changed. My rib cage was close to my hip.

I wish you well. Susan

Paul
06-16-2014, 03:53 PM
Hello everyone,

Spent Father's Day with my daughter her husband and our 2 grandchildren.
When I returned home and checked if anyone had responded to my post I was amazed how many people had responded.

My wife will be going with me to see Dr. Rand on Thursday so there will be a second set of ears in case I miss something.
I will ask why he feels that I would be worse off having the surgery and of course mention the height loss and nerve pain I have been having.

Thanks for all the responses - I really appreciate you people taking the time to post replies.

Could someone on this forum recommend another doctor in MA. who specializes in scoliosis surgery?

I'll continue following this forum and will post the outcome of Thursday's appointment.

Thanks again,
Paul

Susie*Bee
06-16-2014, 04:12 PM
I also wanted to say welcome and to say that I did not have any problems after my surgery - T2-L4 (15 vertebrae) but did have a long recovery. I am doing fine now and no pain. (big smile), but not doing any cartwheels or things like that! I can do many things, but also have some limitations. We are all different! I am also wondering why he is not recommending surgery. You have our curiosities piqued! Take care and keep us informed!

Paul
06-20-2014, 04:54 PM
Hello everyone,

Drove into Boston yesterday morning to see Dr. Rand for my yearly checkup.
X-rays were taken and proceeded to the doctors office for the results. I used to hand carry the x rays up to his office but the last few times I was told they were on a disc to be viewed on a computer.

Dr. Rand stated there was very little change in the curves from last year and he asked how I was doing.

I mentioned that I had lost approx. 1" of height in a 3 month period and he said I did not see that on the x-rays. He said let me go check again and returned and said he could not see any increase in curvature that would show 1" loss. He asked if the measurements were taken at different times of the day and I said they were all taken in the morning. He asked if I was stooping over more than before and I could not really say yes or no. I asked the wife but she says she sees me everyday and may not have noticed the stooping. These measurements were taken at my primary care doctor.

I mentioned the leg and and rib hump pain and how the rib cage was twisting more to the right and how the ribs on the right were aggravating me being so close or touching the pelvic bone. How the ribs on the right side would on occasion capture what I think are the stomach muscles under the ribs causing extreme pain when bending over or exiting the car.

He told me to undress and put on a johnny and left the room. He came back and I asked what he meant by saying I would be worse off having the operation. He asked me to bend my back forward in an arc, bend to the left and to the right and backwards. He said after the operation I would no longer be able to do these movements except bend at the waist. In the patients he has operated on he said that males dislike this lack of movement much more than his female patients. His male patients have a tougher time dealing with the lack of mobility. He then proceeded with leg strength test, balancing on one foot, hopping on one foot, walking on my heels with toes pointed up. Then he used something sharp to see if any feeling was lost in my lower extremities and feet. He also examined the lack of space between the ribs and pelvic bone.

He said surgery was not required at this time but it was my decision. I asked if it was inevitable and he could not answer that question but my curves were large and most large curves do progress so it could be a few years down the road. I said I was healthy now but really could not know if some serious ailment could arise in a year or two making the operation even more difficult. The operation would be done from the rear.

He said my upper curve was 70 and the lower 50.

I see Dr. Rand at New England Baptist Hosp. the Bone and Joint Institute. There was a class starting at 12:30pm and ran to around 2pm that explained the fusion process and he suggested that my wife and I attend which we did.

I don't know how well I would adapt to being so restricted in my movements, this in conjunction with the pain and lengthy recuperation needed even if all goes well.
Got a lot to think about but he said there was no hurry and he was not telling me I must have this operation at this time.

That's about it,
Paul

susancook
06-22-2014, 01:46 AM
Paul, unless you cannot breath or your heart is being compressed with a massive curve, the decision to have surgery is ours to make. For me, my quality of life was tanking and I had little tolerance for activity. I felt that without surgery, that I would become more and more inactive and have a poor quality of life.

I saw two surgeons, both of whom "offered" surgery. Yes, I cannot do back ends and cartwheels, but I am back in the mainstream of life. I do not miss not being able to twist except at the Sellwood and Hawthorne Bridges in Portland when I try to merge onto the bridge. It is difficult to turn my body to see oncoming cars. I compensate by turning my car more to the left and then making the right to get onto the bridge. That probably causes a little bit of anxiety in the person in back of me who fears that I am about to turn Left and crash into ongoing traffic.

I am beginning to focus more on what I CAN do, rather than regretting what I can't do.

A month before my surgery, my first surgeon put me on Dilaudid for my pain. To me, that was an ominous sign, because without surgery, I was destined to need more and more narcotics. That's not a good life.

I wish you well. Do get another opinion, two would be better from well practiced adult deformity spine surgeons in your area. If you were on the West Coast, I could give you some suggestions.

Susan

Paul
06-23-2014, 04:59 PM
I am not in such severe pain that I require narcotics or that any of my organs are being crushed at this time.
No difficulty breathing. I do have back and leg pain but not to the point of requiring potent drugs to suppress the pain. This may be coming down the road.

I really like your attitude about not dwelling on what you cannot do but on the things you can do.

I believe that I would not proceed with this operation at this time unless symptoms really take a turn for the worse or my doctor says my organs no longer have any room and it is time to correct this.

If there was only some way this could be corrected without becoming so rigid and non-flexible. I don't know if I would freak out upon awakening from the surgery from not being able to flex my spine. I would be a little bit taller and the rib hump reduced but at such a high cost of flexibility and that is if everything goes fine with the operation, no unexpected setbacks. I am quite active right now doing bench presses and tricep and bicep work along with crunches and pull ups.

My thoughts were that if this operation was definitely coming in the near future then would it make sense to have it done while I am reasonably healthy. Who knows what shape I will be in medically a few years down the road.

I read some postings from members who regretted having this done and it really scared me.

I never wore a brace. If I was to put one on would that give me some indication as to what my spinal fusion restriction would be?

Thanks again Susan for responding to my post. I hope you continue with that positive attitude.

Paul