Posted , 6 users are following.
I would love some feedback about several aspects of my healing process. I had surgery 10 months ago and can feel my hardware, or at least that's how it seems. Does the sensation go away over time? Any feedback would be appreciated.
0 likes, 19 replies
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lucie47312 LasVegasgirl
Posted
Hi there, I'm trying to chat to others with scoliosis but there is only yours and my post up.
It feels like I'm so alone. Have you been on Patient long? Last year I had a knee replacement and got all sorts of help and support, but no such luck with this. Anyway, I hope you are recovering well, take care. Lucie
LasVegasgirl lucie47312
Posted
Hi Lucie,
I am happy to start a dialog with you and help in whatever way I can. Sadly, I know much too much about scoliosis. When you went on to the patient info website, did you select the condition of scoliosis, because I did answer a letter from a young girl yesterday, and that's when you saw me (I changed my nickname to make it less personal). Also wanted you to know there is a huge forum, maybe www.scoliosis.org (not sure). It originates out of San Francisco, CA, and the narrator is Linda Racine. I hope I can help you... Ask away. LVG
lucie47312 LasVegasgirl
Posted
Hi there, I've been out and about today so haven't had chance to sit down. Long story short: 10 yrs ago, when 54, took oral steroids for flare up of inflammatory symptoms, 3 months after noticed increasing rt hip pain,to the point I was on morphine patches. Total hip replacement 3 months further on, the very next day I could see and tell that leg was noticeably a lot longer. Almost straight away my hip pain was replaced by back pain. Muddled on, limping and in pain, still working at this point. As one leg visibly longer I felt I was being pushed over to a side and bent over. Lost 3 inches in height. Have very high bone density so it's not osteoporosis. Many visits to pain clinic, nothing investigated, just Physio etc. Unconnected to this 2 or 3 years ago I needed an X-ray of stomach, also have chronic constipation, saw X-ray and said is that my spine?? No one had ever sent me for X-ray. This is the 1st time I knew about this scoliosis. Longer story shorter! I was referred to ortho specialist who referred me to regional spinal centre. Two visits, MRI and ct scans later and we're up to now. I can have my spine straightened, BUT have been told it's not guaranteed to help my pain, it is a very big operation, and could even worsen the ability I have to walk so I could end up in wheelchair. This guy thinks I've had scoliosis since young. So with the leg length discrepancy it has pushed the spine over and over.
My world just gets smaller and smaller, and I cant remember the last full day I hadn't pain. The consultant has left it to me to decide whether or not to have the op. He will see me again in 9 months. I'm seeing if I can manage the pain and seeing how I go.
Sorry this has turned into an essay. 🙂
Dont worry about answering straight away, I know everyone's busy, but thanks for reaching out to me. 🙂
LasVegasgirl lucie47312
Posted
Dear Lucie,
I am so sorry you are in so much pain. Please don't ever be concerned about imposing or sending too much information. Your mental well being and gathering as much information as possible is critical right now. Just so you know, I am having trouble with the website, and got locked out a couple times, so I hope I can continue to reach you. We are close in age. It seems to be about the time when we all start to find scoliosis pain intolerable. Again, I am sorry you are suffering. My back started to hurt in my early 40's, and I finally just had surgery within the last year, so that's why I said I know a great deal. I have two questions for you, first can I ask what city and state you live in, and if you have access to different choices of where to get help. Secondly, did the surgeon tell you what the degree of your curvature is, and is it an "s" curve?
I am sure you are curious about my surgical outcome, and I am happy to share this with you, but I need you to send me your private email address. I am going to create a new email address to maintain my privacy, and I will send it to you there. From my perspective, you are fortunate that this surgeon told you what he believed to be the truth, but in my view you need to get more evaluations. There are surgeons out there that may be able to help you hope for a better outcome. You have to get multiple assessments, and get a copy of your xray on CD so you don't have to do xrays over and over. They can all make copies for you. I chose a neurosurgeon, and chose not to use an orthopedic surgeon. They cut through muscles when there are newer surgeries out there that take that out of the equation. Research "XLIF" and see if that resonates with you. My curvature was reduced by 60 degrees. But the XLIF recovery is not easy, there has been intolerable pain, and I am using a walker and a wheelchair outside my apartment. That's all I can share publicly. You must investigate any surgeon you are considering - I may have some ideas depending on where you live. The surgeon should be fellowship trained, and do at least two major deformities a week if you have a large curvature. But you do not have to settle! You need to find a neurosurgeon that says he can get you out of pain, and you need to talk to patients that he has operated on with similar deformities. Never accept the possibility that you will be in a wheelchair for life. That is not acceptable. Also never believe any doctor that tells you he can cure you without surgery. They are working on something at the Special Hospital for Surgery in New York, but I do not know if it will come to fruition. Another resource is a website called something like "50 Spine Specialists You Need to know". That is not the exact phrasing, but if you can find that list there may be another doctor in your area. I am going to create a new email address and register again. I hope this letter has given you some hope in the meantime. I am here for you, and there are others that want to help as well. Stay strong, and fight to get your life back. You deserve nothing less. LVG
LasVegasgirl lucie47312
Posted
cheryl97005 LasVegasgirl
Posted
I just read your letter to Lucie. I am 73 and I am scheduled for scoliosis surgery in February. I have an S curve the thoracic is 64 and the lumbar is 47. My surgeon is Michael Chang, Scottsdale AZ. He is a spinal specialist and only operates on the spine. And mostly on deformities. He has done over 1,000 scoliosis surgeries. I hope I have chosen wisely.
Could you share your surgery and recovery with me? I feel good about my decision to proceed with the surgery but I am so afraid of the unknown and what to expect and how it will effect the rest of my life.
Thank you so much for any help you can give me.
Cheryl
LasVegasgirl cheryl97005
Posted
I wish you only the very best outcome with your operation.
May I ask, are you doing the newer XLIF type procedure, not that newer is necessarily better, or are you dping traditional rods with an orthopedist? I may be able to help more if I had this bit of information.
Take good care,
LVG
cheryl97005 LasVegasgirl
Posted
Thank you for your response back to to me. I do not think I can have the XLIF procedure because I have a severe rotation and an s curve. So I am scheduled for a full t3 - s1 fusion.
Did you have the XLIF for your lumbar fusion and no thoriatic correction?
Cheryl
LasVegasgirl cheryl97005
Posted
I had an XLIF with an 80-90 degree lumbar S curve and severe rotation with a huge rip hump. I asked my neurosurgeon not to fuse my sacrum if possible, and he left the sacrum and L5 unfused for more motion preservation. The rib hump and rotation is gone, and the thoracic is expected to derotate further because it was compensatory to the larger lumbar curve. Please do not in any way interpret this as medical advice. I am just helping you gather information. I am not in any position to give advice. I can only share my experience. The XLIF can be a very difficult and long recovery because there can be nerve damage, and it can be permanent, so some surgeons will not perform it.
Best of luck to you,
LVG
cheryl97005 LasVegasgirl
Posted
Hi again,
Thank you for the information. I'm sure you are younger than I and maybe that is a factor. I also have moderate multilevel spondylitis of thoracic spine, severe spondylitis L2-3 with anterior osteophytosis, 7mm lateral listhesis L4-5, moderate spondylitis L1-2 L3-4 L5-S1, severe multilevel facet arthropathy of the lumbar spine and multilevel degenerative facet arthopathy of the lumbar spine. Did you have any of my problems prior to your surgery?
Cheryl
LasVegasgirl cheryl97005
Posted
Hi Cheryl,
I was fused from L4 to T10. My surgeon said the thoracic would begin to straighten over time because it is compensatory to the lumbar curve. I begged my him not to fuse my sacrum, because I knew how much that would limit my range of motion. I had a very severe rotation as well, but at this point if I had to do it again, I am not sure I would do XLIF, not because of age, but because the risk of nerve injury in large deformities is high. I have to state a disclaimer, that because I am only speaking from personal experience, I am sure there are some people who do well and recover quickly. I am not one of those people. Recovery has been very painful, and very slow. But I have a friend who did just the sacrum and L5, and she is miserable. She can walk forever without pain, even go to the gym and do yoga, but she is having trouble sitting for long periods of time. She is an artist, so it may have to do with how she is trying to sit, as opposed to just having meals, etc. She said driving does not bother her, but of course her curve is progressing. Also I understand that I may be at risk for additional surgery if the last two discs degenerate further, so please do not take this as advice. It was just my personal decision. I wish I had the perfect solution for you, but I am afraid there are no easy answers. I am so sorry that I cannot be of greater help. I was in excrutiating pain before the surgery, so I know what you are going through. None of us want to end up unable to walk and need constant care. I was told by a pain mgmt.doctor that the Hospital for Special Surgery in New York was close to having a non-surgical cure, but I don't know if it will ever come to fruition. I would try to read everything I could on the scoliosis.org forum. You can post questions there and perhaps get answers from the moderator of the forum, who devotes her life to scoliosis research.
At least know that you are not alone, and your fellow suffers feel great compassion for what you are going through. I wish you the very best outcome imaginable.
We can write one last time if you care to, but I think it might be prudent for me to opt out in the near future. Public postings are not my favorite venue.
Good luck, dear Cheryl.
LVG
lucie47312 LasVegasgirl
Posted
Hi there, thank you for answering so thoroughly. I'm a little reluctant to put my email address out on here. Are you on Facebook? You could personally message me on there. I'm not in America, but the UK. Or if you've set up an incognito email let me have that and then we'll email. Thanks again
cheryl97005 LasVegasgirl
Posted
Hi again,
I hope you are recovering from your surgery and doing better. Sorry you are having a lot of pain 10 months after your surgery. Is your pain worse now than before surgery? How long were you in the hospital? Did you go to rehab from the hospital? I am beginning to think that the younger ones do well with the surgery and older adults not so well. Oh the million dollar question, To have the surgery or not? Knowing what you have been through with yours, would you do again? How did you know for sure you had selected the right surgeon? Many have good credentials and lots of experience. Sorry for all the questions 🙃
LasVegasgirl cheryl97005
Posted
Hi Cheryl, thank you for your kind words. I do think it is possible to have a good outcome when we are older. But I think fitness and bone density do play a role in eaae or difficulty of recovery. In retrospect, I do believe I made the right choice to have to surgery. I know someone who is a distant rekative through marriage who is in her late 70's and did nothing. She is on a morphone pump and her poor husband who has his owm health problems has to transport her in a van. She is shrinking, and just keeos getting shorter and shorter. I swore whennI got under 5' I wiukd have the surfers
LasVegasgirl cheryl97005
Posted
Hi Cheryl, sorry for the typos. I got distracted for a minute and when I went back in to finish writing I got locked out of the email. How embarrassing! I certainly didn't type "surfers", I may be on pain meds but I am not crazy. Sometimes emails just pull words out of thin air. I have had one of the worst years of my life, I won't sugar coat that. Anyway, I started to say that I think I will be three inches taller once my thoracic spine straightens. I was 4'9 and 1/2. I had an unsightly rib hump that was impossible to cover in clothing, which is now completely gone. Also my flat back syndrome was so bad... My surgeon was able to restore lordosis that I have never had before. But I spent 4 months in various hospitals and nursing homes. I can give you some advice to help you avoid some of my problems. Get a phneumonia vaccine before your surgery. I don't know why I didn't get one, but I did get phneumonia. If they foley cath you after surgery, make sure it is only on for 3 days, or that they do bladder retraining. I have a serious injury bladder injury now because mine was left in for almost 3 weeks. I was straight cathed over 50 times, often by male attendants. It was painful and mortifying. I am doing home PT now and have to get ready. I will write again later this week and try to address more of your concerns. Please don't ever feel the need to apologize for asking too many questions. There is no such thing. Try to stay calm. Warm regards, LVG.