How best to address conditions: Scoliosis/Stenosis/Spondylolisthesis?
For 2 long years I have been researching, making apptments w/ doctors in 3 states, that take months to schedule. Until 2 yrs. ago I was playing sports. Now, instead, I go to the gym 4-5 times a week doing exercises from assorted PTs and Drs. I am determined and I think they help a little. Walking more than 200 ft. with no assistance devices is difficult (UNLESS I HAVE MY WALKER OR A CART OR NEW CANE - THEY ALL HELP. ) I am stooped over. But the exercises help by strengthening supporting muscles.
I now have better balance, a bit more stamina, etc. What's the problem? Well, it is unpredictable. Sometimes it takes me 10 minutes to arise in the morning due to stiffness, pain, heaviness, aches. I have pain - but not like many of the people in this discussion. PROBLEM: I cannot find a surgeon who will do surgery. BIG ISSUE: I am an 80+ Female. Reasons for surgeons' rejections:
Well, it is: 1-AGE, 2-Quality of bones, 3-Degree of Spine Curvature.
I have been to some of the best hospitals - 4 times in NY City, 2 times in Cleveland. I live near Pittsburgh now, but I feel I need B-I-G hospitals with Drs. who have seen multiple conditions. I may have to get over that because it is becoming more difficult for me to travel to
these distant locations. I go by myself (my children work full time). My concern is that I may have to just find a local Dr. because I know I will have to run back for follow up visits and it is too difficult to travel 500 mi. to NY and 200 mi. to OH. I feel I need an advocate because I am getting delirious sorting through all the research. I felt I was the perfect candidate for the new TOPS surgery - it is supposed to address all my conditions. I tried; but they could not do it. I am so motivated; yet am beginning to almost give up. It takes too much time when I have other responsibilities that I cannot take care of.
Does anyone think, as I do, that the most successful Drs. are in cities that see varieties of cases? When surgeons say "Quality of my bones", I object. I have rarely fallen and never ever broke a bone (nose) until I fell last year on steps. I have always had great bones, but, I think because I had oopherectomy at age 40, I have lost some bone strength due to lack of hormones. But I HAVE ALWAYS BEEN HEALTHY, ACTIVE. I worked full time until I was 73. Now, my main job is spinal research and what devices & exercises I need. I almost feel like I have a medical degree!! Question: I am VERY UNCOMFORTABLE SLEEPING LIEING DOWN (on sofa or bed). Because my body does not like that position. So, I sleep in a chair (either Lazy Boy or plain TV club chair). And I usually feel good and can get up semi-quickly than if in a bed. My PT said I caused some vertebrae to fuse because of this! My fault! By, why sleep in discomfort and struggle to get up when I am in a "semi sitting position) in a chair? My Questions: how can I find a patient advocate? Does anyone think I should forget going a distance to
big hospitals - because it is becoming more difficult for me. Should I seek out a teaching hospital? How can convince Drs. I am not the typical octogenarian? Do they hesitate because of their reputation? because the surgery is too difficult? I am kind of spinng my wheels, learning a lot, but going nowhere. All SUGGESTIONS WELCOME
Thank you. Sorry for wordy message.....and GOOD LUCK TO YOU ALL....
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@libertyusa
Are you working with a rheumatologist and nutritionist/dietitian to address bone health/quality and scoliosis? Were you diagnosed with osteoporosis?
What do your MRIs of your cervical and lumbar spine show for spinal cord/nerve root compression and discs? Do you have osteophyte bone growths? What spinal levels do you have scoliosis, what degree, and what levels have degeneration/compression?
Have you worked with a geriatrician and other specialists to get referrals to orthopedic spine specialists /surgeons and neurosurgeons who have had success with surgeries for your condition and age? Do you work with a neurologist now and have you had EMG/nerve conduction studies of upper and lower limbs to narrow down what levels of your spine are compressed and check neuromuscular health?
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3 ReactionsHave you researched the neuros and spine docs at UPMC? I've been there and was pretty impressed by them. (Went because my husband was part of a study there.) I met one of the surgeons and spoke with him about my own back (scoliosis, spinal stenosis, spondylolethesis). He recommended finding a Schroth therapist, which I did. However, they do lots of back surgeries at UPMC. By the way, I think they would have operated on me but I live in Maryland and am not ready for surgery.
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2 ReactionsSo sorry you are going through all of this !!...Some good suggestions/questions here…a totally different possibility might ? be to consult with an osteopath/MD to see if at least some of your problems are solvable by less invasive means… i say this mostly as a question— I have more questions than answers for sure ! Best of luck to you !
@libertyusa I know this is a frustrating situation for you. The bone quality consideration is a big one if you have osteoporosis. Scoliosis surgeries are big surgeries that usually involve placing rods and screws. The screws may pull out and loosen if bone quality is not good enough to hold it or if the screws are not placed at the correct angles. I'm not a scoliosis patient, but I have read a lot and watched a lot of spine conference presentations about this subject. The lower end of the spine has a lot of pressure on it, and bending or twisting adds more pressure, so it is important that the screws can hold because it is bearing most of your body weight. Often surgeons will ask a patient to have treatments to build bone density before doing a big surgery like this.
I know this is frustrating, but a big surgery like this may make you worse off than you are now. You would want to see a surgeon who specializes in these types of cases. Your health status affects success of surgery at any age. Your surgeon has to answer that in your case. There may be additional risks specific to your case. Some surgeons take cases with more risk, and others do not. I hope you do find care that helps.
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4 Reactions@corinnee where is UPMC ?
LibertyUSA,
age makes us more susceptible to the anesthesia, sometimes causing mental decline.
Jennifer's comment about bone strength is important. You don't want the hardware to fail to stay in place after surgery. Has anyone suggested bone building medications? Some work rapidly.
Is your degree of curve too great or too small?
If your vertebra have fused, it's because of the discs, not because you've been sleeping in a chair. That blame is silly.
I love that you travel all over the states to get your medical degree. You sound highly energetic. I think it is more important to find the right physician. Sometimes they are in small cities unconnected to large institutions.
But first you have to strengthen those bones. Have you seen an endocrinologist, had a dexa.
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4 Reactions@annie1 University of Pittsburgh Medical Center. You can search doctors on its web site.
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