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Thread: Multiple health conditions caused by scoliosis

  1. #1
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    Jul 2004
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    Multiple health conditions caused by scoliosis

    Hi, Im Linda. My sister had spinal fusion w/harrington rods 20+ years ago. In the last year she has developed severe obstructive sleep apnea, restrictive lung disease, leg tremors, upper and mid back pain, & the list goes on. Drs are testing and treating her with little success.
    She has finally seen an Ortho Surgeon supposedly specializing in post fusion scoliosis, Dr. Watson, Fresno Ca. So far she has had xrays( showing possible additional curvature in the upper back measuring 120) Sorry about the length of this but we are so confused and really worried about her health deterioration.
    Her Dr.wants a myeliogram, says this is only way to determine whats going on with her back> Is a myeliogram test typical for scoliosis testing? Anyone know any Drs in Fresno Ca.or anything about Dr. Watson Sierra Pacific Orthopedic group? Has anyone ever experienced any of these problems? Anyone have restrictive lung disease. Thank you all for any help or info.
    God Bless
    Linda

  2. #2
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    Hi Linda...

    Sorry to hear about your sister.

    A myleogram is typical for people with prior spine implants who are having new difficulties.

    I run the Scoliosis Association of San Francisco, and have never heard of Dr. Watson. I also see that he's not a member of the Scoliosis Research Society. He could be a great scoliosis doctor, but I think it would be wise to do a little more checking. Your sister shouldn't be his first scoliosis revision patient. Ideally, she should be somewhere over the 100th such patient. I did find something on SpineUniverse that says that Dr. Watson is fellowship trained, but it doesn't say where his fellowship was, or even if it was a spine fellowship. If you can get that information, it might help in determining if he's qualified.

    Before agreeing to surgery, I'd like to urge your sister to get to UCSF for a second opinion. They do a lot of scoliosis revision surgeries there. The four spinal deformity specialists are David Bradford, Serena Hu, Sigurd Berven, & Vedat Deviren. I would let any of them operate on me. To make an appointment, call (415) 476-4010.

    Best of luck to you and your sister.

    Regards,
    Linda

  3. #3
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    Thank you so much for answering, Beverley's original surgery was done at moffatt hospital in San Francisco, apparently her Dr is no longer there, a Dr. Lucas, but I will share your response with her.
    Do you know of any scoliosis support groups here in Fresno? Thank you again. Linda

  4. #4
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    Hi Linda...

    The only other group in northern California is in Sacramento. The contact there is Diane Gums. You can reach her at dgummer@comcast.net.

    Regards,
    Linda

  5. #5
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    Jun 2004
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    Hi Linda.....(and linda)
    My name is Sinead and i'm 36 yrs old.I had scoliosis surgery in 1983 for a 120 degree curve which did not correct during surgery and as a result I have restrictive lung disease.My lung capacity is approx 50% of normal and in spite of this I live a regular life.
    I totally sympathise with and understand your sister's situation.
    Most of us with large curves had early onset scoliosis and have had our lungs compressed from an early age.
    There are very effective ways of dealing with restrictive lung disease which can improve her quality of life.For severe cases a portable c pap system is used to keep the airways more open at night and improve oxygen levels.In my case I use asthma meds to do this.......I take Ventolin(albuterol) and beclomethasone(a steroid) as inhalers to dampen down the inflammation and early morning coughing that goes with this condition.
    The question of revision surgery for 120 degree scoliosis with restrictive lung disease is a difficult one.I have not found a surgeon willing to do this for me in ireland.Apart from the complex surgery involved there is the possibility that the disruption to the chest wall could further reduce the lung capacity.
    I agree totally with Linda racine.Pick a revision surgeon with extreme care.
    A myelogram is an injection of dye into the spinal column to highlight the spinal cord under x ray to show possible damage.I had one 21 yrs ago and why not an mri scan?A harrington rod does not prevent an mri scan being done....it may reduce the clarity of the image but should be fine.
    Sinead

  6. #6
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    Thank you Sinead, I appreciate all the info I can get on this restrictive lung disease, because apparently nothing was ever said about it. Let me ask you do you have tightening aroung the diaphragm area and around into the back making it feel as though a deep breath is not possible? Also do you experience
    muscle spasms? Is this Restrictive lung disease life threating?
    Thank you so much, God Bless
    Linda W.

  7. #7
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    Hi Linda,
    I know so many people who have restrictive lung disease from advanced scoliosis or congenital scoliosis.It can become a problem if the lung capacity drops below 50%.If not managed correctly in some circumstances it can have major health implications for the heart and lungs.Most of us have normal if somewhat breathless lives, the main risks are pneumonia from recurring chest infections.
    It mainly affects me by producing asthma like symptoms, coughing frothy sputum in mornings and before I sought treatment I felt like i had to make an effort to get a very deep breath.This was improved by actually taking asthma meds.
    The best way to find out the severity of your sister's problem is to have a full respiratory work up and have a sleep study done to check levels of carbon dioxide in her blood during sleep.if oxygen levels are dropping too low during sleep her physician would recommend suitable treatment for this.
    I work as volunteer staff on a site called www.scoliosis-support.org and it's a hot topic at the moment there as we have many members with lung capacities below 30%and have very severe restrictive lung disease.I'll ask them to come and post here or e mail you .Also check out these threads for people's direct experiences.http://www.scoliosis-support.org/mod...&showtopic=197
    http://www.scoliosis-support.org/mod...&showtopic=358
    There's quite a bit of information in there Linda but if you need any help making sense of it just keep asking questions.Try not to worry too much about your sister......I'm sure there's something out there to improve her quality of life.
    Sins

  8. #8
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    Hello, Thank you for answering Sins, I am so grateful that I found this site, I am sharing everything with Bev my sister because she does not have a computer and it is so helpful, She has had a pulmonary lung function test, dr said her lung capability is fine, although her oxygen sat tests were dropping below 70% at night, now she is on a bipap for obstructive sleep apnea which she just got about 4 weeks ago.
    As a matter of fact all of this began with her lungs after a sever bronchitus last year, prior to that she was pretty good. I believe what happened is a major health breakdown beginning with undiagnosed sleep apnea and moving on to all of this other stuff, with the lung disease being triggered by the bronchitus. Now we just have to find ways to deal with all of it, of course the lung disease is the biggest problem now because of the decrease in physical ability and the muscle spasms she is experiencing from the struggle to breath.
    I will check out these sites you mentioned
    Again I appreciate everyones help
    God Bless you all. I hope and pray for each of you that you will get better.
    Linda W

  9. #9
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    lucky wishes

    Just wanted to wish you and your sister well, Linda W. I hope you find some answers and relief in the near future and we will all be thinking of you til then. Laura

  10. #10
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    Best of luck to Bev!
    There can be a long recovery time from bronchitis,I think my lung function took over a year to recover from a bad bout.The Bipap should make a huge difference to her energy levels and oxygen sats.
    She should consider the inhaled steroids to stop the spasms. I've found the beclomethasone a great help.
    Give her my best wishes and I hope that a good improvement happens for her very soon.
    Sinead.

  11. #11
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    Aug 2005
    Location
    Duluth MN
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    20yr old son with severe scoliosis now chronic chest pain

    My son, Matt, has CP and severe mental retardation(no audible speech). Had three spine surgeries first harrington rod, then bone infection, then a rib taken for infusion, another rod placed, then removed due to infection again. Surgeries at Gillette Children's Hospital in St Paul MN, Dr Koop orthopedic surgeon. He is in a wheelchair.

    For the past 3 years I have been trying to find out why he has daily episodes of chronic pain. He rubs his breast bone area, and screams, while biting on his hand. The pain is in his breast bone area. We went the GI route, which I read these surgeries can cause nerve damage to the bowels and bladder, which he had tremdous trouble in both areas. He is now tube fed through the jejunume and it did not stop the problems. Now also has to be catherized as he does not empty his bladder.

    Just yesterday he had a CTscan of chest. Dr has not called yet, but I got the report and it says, "Severe dextroscoliosis of the spine with some deformation of the cardiopulmonary configuration and diminished lung volumes, hypoinflated lungs".

    Since Matt is an adult it is very difficult trying to find a Dr that can relate to his disability in general. Can someone tell me what type of Dr we should see now? Maybe a thoracic Dr or also what other tests. The point is he is suffering immensely, on a daily basis and I cannot take seeing him like this anymore!!!! After coming across this site, I am relieved to get insight and confirmation on his symptoms/conditon. His lungs are compressed...so where do I go from here? The Drs don't listen to me much around here. Anyone out there, please!!! Oh, he also has tremdous weight loss. I am not sure how to post on this site so I hit reply to yours. Thanks Helen

  12. #12
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    Nov 2004
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    Hi Helen,

    You will find a lot of help on this website from other members. Also, Linda Racine is the moderator and I feel sure she will be able to give you some insight on what to do next and will be able to give you info on locating the best doctor in your area. Hang tight...she doesn't usually miss reading any post.

    I just wanted to post and let you know that my heart goes out to you and Matt. I know it is very frustrating to know how to help Matt when he is unable to verbalize his pain. Your story holds a special place in my heart as I have a Downs Syndrone sister, the apple of my eye, the most special sister anyone could have! I will pray for you and Matt daily! May God bless you and give you clarity of mind as to your next step in helping Matt.

    Kindest Regards,
    Gail

  13. #13
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    Sorry Helen and Gail, but I don't have a clue. It seems to me that it probably isn't the scoliosis causing the chest pain. What about a pulmonologist?

    -Linda

  14. #14
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    Lightbulb For Helen

    One thing that can cause chest pain is costochondritis;inflammation of the area where the ribs meet the breast bone.

    Have you ever consulted a rheumatologist? They can sometimes sort out odd symptoms like this with specialized blood tests.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  15. #15
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    Aug 2005
    Location
    Duluth MN
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    Thanks to everyone for your reply

    I never thought of seeing a pulmonologist before. Linda you said maybe it wasn't the scoliosis causing the chest pain. I have spent the last three years looking into GI problems, even the Mayo Clinic. Matt does have a severe curve and he sits in a wheelchair that does not help things. Maybe the ribs are causing him pain as I was told his internal organs would start to get crowded out. He also has these episodes in bed while lying down.

    All I know is that he acts like a woman in labor the way these pains come on him and he has a path rubbed in the middle of his chest. He's been tested for GERD etc. Not sure what "deformation of the cardiopulmonary configuration is". Maybe it is his ribs pressing. He is very lean and also does not absorb his food. I welcome anymore comments/suggestions from anyone.
    I am not sure how to post individual replys just yet.

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