new to forum

[daylight]

Hi everyone,

Just recently I found out that I have scloiosis. This can on within the past 2 years from DJD, and benign "Osteoid osteoma" tumors. I also have RA,OA and spondyolitis,inflammatory bowel/bladder problems,gastroparesis,muscle spasms . For the past few years I've been told that my spinal pain for fibromyalgia and I keep telling them no my spine hurt bad and I've had trouble walking. So they sent me to the shrinks who told me that i was mentally ok.Then the doctor just shugged and said FM. Now after 2 years major pain in the cold and very hot months,gait trouble they say that the can't do anything but pain control.
Becuase I have a bad inflammatory problem they blame most of it on the RA and possible myositis.
Is there anything that I can do to help easy the spinal pain? I already take the up to 100 mgs of baclofen a day (most days only 80 mgs due to sleepiness).
This is really getting scary as I do not wish to be stuck in a wheel chair all the time. I already have to use one during outing . Any suggestions?
I have a S-curve but I don't know the degrees , tumors in T9-l1-c4-5 ,Djd through out spine. And I'm 44 years old.
Hate to sound like a whine but I need help.

Thank you

[Vali]

Hi daylight,
Welcome to the forum. So sorry to read about your pain. I don't have much to add except that when my lumbar muscles would spasm (you could actually see the bulge due to inflammation) i would take a Magnesium supplement and have accupuncture. This forum has a lot of knowledgeable people and I' sure someone could give you some more advice. Have a great day:)

[JenniferG]

No apologies necessary daylight. You have a lot on your plate. As Vali says, there are a lot of very well informed people here who may be able to give you a few tips. My question would be, have you seen a scoliosis specialist yet?

[jrnyc]

Hi Daylight
so sorry for all the pain you are going through! was amazed at how many medical problems you endure!

didnt understand all you wrote about....is DJD degenerative joint disease..is that osteo..do you have both rheumatoid & osteo arthritis?

i have osteoarthritis, with very bad arthritis in spine...along with scoliosis, degenerative disc disease & spinal stenosis. lyme disease worsened all problems, particularly arthritis!

i have a pain management doctor in nyc where i am from, & one in CT where i live now...the doctor in nyc gives me botox injections 3-4 times a year for thoracic curve...(the doctor in CT "doesnt believe in them"...dont know why)...the botox prevents the muscles from going into spasms & bunching..so it takes care of alot of the pain..that doesnt work for larger lumbar curve..have had epidurals, facet block, nerve ablation, sacroiliac injections for that...some of the shots work...temporarily...

am thinking that you might need a pain management doctor who coordinates treatment for you with other doctors you have...

you didnt say what medications you are on..are you taking something for either/both arthritis conditions? for pain?

i hope you find the help that you need..& treatment to alleviate your pain!

best regards
jess

[Jimbo]

Sounds like you are having a rough time! My advice would be to go and see a adult scoliosis specialist who can review your xrays/mri's and set you up with some sort of plan of action, including directing you to a pain management specialist. Is Baclofen all you are taking? There are numerous other drugs on the market that may help you with your conditions. For example Pregabalin (Lyrica) for fibromyalgia and anti-inflammatories for you RA, but your tummy might be a problem with the meds.

There is help out there! Your key to a good outcome will be in finding the right specialists, which can be tricky and expensive, but there are plenty of people on this forum who may be able to point you in the right direction :)

I know there are many great specialists in California.

http://www.srs.org/find/

Behrooz A. Akbarnia, MD
San Diego Center for Spinal Disorders
4130 La Jolla Village Drive, #300
La Jolla, CA 92037-1481
Phone: (858) 678-0610
Fax: (858) 678-0007

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Christopher P. Ames, MD
University of California San Francisco
505 Parnassus Ave
Room M780 Box 0112
San Francisco, CA 94143-0112
Phone: (415) 353-3998
Fax: (415) 353-3596

Specialties: Adolescent, Adult Scoliosis, Aging Spine
Neel Anand, MD
Spine Center
Cedar Sinai Medical Center
444 S. San Vicente Boulevard, Suite 800
Los Angeles, CA 90048
Phone: (310) 423-9779

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions
Ramin Bagheri, MD
San Diego Center for Spinal Disorders
4130 La Jolla Village Drive, Suite #300
La Jolla, CA 92037-1481
Phone: (858) 678-0610
Fax: (858) 678-0007

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Daniel R. Benson, MD
UCDMC
Dept of Orthopaedics
4860 Y Street, Suite 3800
Sacramento, CA 95817
Phone: (916) 734-2937
Fax: (916) 734-7904

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Saul M. Bernstein, MD
So. California Orthopaedic Institute
6815 Noble Avenue
Van Nuys, CA 91405-3729
Phone: (818) 901-6600x3855
Fax: (818) 901-6636

Specialties: Adolescent, Juvenile/Infantile, Adult Scoliosis, Aging Spine, Degenerative Conditions
Sigurd H. Berven, MD
University of California-San Francisco
Deptartment of Orthopedic Surgery
500 Parnassus Avenue
San Francisco, CA 94143
Phone: (866) 817-7463

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Nitin Bhatia, MD
UC Irvine Dept. Of Orthopedic Surgery
101 The City Drive South
Pavilion 3
Orange, CA 92868 United States
Phone: (714) 456-7012
Fax: (714) 456-7547

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions
Kevin C. Booth, MD
Northern California Spine Institute
5725 W. Las Positas Blvd., Suite #200
Pleasanton, CA 94588
Phone: (925) 469-6274
Fax: (925) 469-0933

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions
H. Leon Brooks, MD
8670 Wilshire Blvd., Suite 206
Beverly Hills, CA 90211
Phone: (310) 855-0752
Fax: (310) 855-0753

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
John Carlisle Brown, MD
Institute for Spine At Hoag Hospital
361 Hospital Road, #521
Newport Beach, CA 92663
Phone: (949) 645-9766
Fax: (949) 645-0924

Specialties: Adolescent, Adult Scoliosis, Degenerative Conditions
Ivan Cheng, MD
Stanford Medicine Outpatient Center Spine Clinic
450 Broadway Street
Pavilion A-MC: 6110
Redwood City, CA 94063
Phone: (650) 725-5905
Fax: (650) 721-3409

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Jeffrey Dean Coe, MD
Silicon Valley Spine Institute
221 E. Hacienda Avenue, Suite A
Campbell, CA 95008
Phone: (408) 376-3300
Fax: (408) 374-8830

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Vedat Deviren, MD
UCSF, Ortho Surgery Department
500 Parnassus Avenue, MU-320W
San Francisco, CA 94143
Phone: (415) 514-1527
Fax: (415) 476-1304

Specialties: Adult Scoliosis, Degenerative Conditions
Robert K. Eastlack, MD
Scripps Clinic
Dept of Orthopaedic Surgery
10666 N. Torrey Pines Road
La Jolla, CA 92037
Phone: (858) 544-7988

Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions
Michael Flippin, MD
Kaiser Permanente - Dept of Ortho
4647 Zion Avenue
San Diego, CA 92120
Phone: (619) 528-5000

Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions
T. Kent Ganocy, II, MD
Southern California Permanente Medical Group
4760 Sunset Boulevard, 1st Floor
Los Angeles, CA 90027
Phone: (310) 488-8333

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions
John M. Gray, MD
Office of John M. Gray, MD
2100 Webster Street, Suite 305
San Francisco, CA 94115
Phone: (707) 535-0838
Fax: (707) 535-0839

Specialties: Adolescent, Juvenile/Infantile, Adult Scoliosis, Degenerative Conditions
Munish Chandra Gupta, MD
University of California - Davis
Department of Orthopaedic Surgery
4860 Y Street, Suite 3800
Sacramento, CA 95817
Phone: (916) 734-2937
Fax: (916) 734-7904

Specialties: Adolescent, Adult Scoliosis, Juvenile/Infantile, Aging Spine, Degenerative Conditions
Larry D. Herron, MD
1304 Ella Street, Suite A
San Luis Obispo, CA 93401
Phone: (805) 541-4700
Fax: (805) 541-1564

Specialties: Adolescent, Adult Scoliosis, Aging Spine, Juvenile/Infantile

That is just a few of the adult scoliosis specialists in Cali, so depending on your location within Cali, you will have a few to choose from!

[jrnyc]

Hi Daylight
sorry..didnt realize you said you take baclofen..i just looked it up..i see it is for spasms & such...but i wonder if it helps any with pain...?i know some of the arthritis meds are hard on the stomach...do you take anything else besides the baclofen? i reread your post & realized you said OA, RA & DJD...i thought DJD was like osteoarthritis...so i must be mistaken....?

it sounds as if a team of doctors is needed..orthopedic, internist, scoliosis specialist, pain management.....i hope you can find doctors who want to cooperate to find what is best for you!

hope there is some way you can find a medical group with the different kinds of physicians you need..is there a medical clinic, hospital, or a kaiser-permanente kind of place you can go to?

hope you find what you need..maybe you could start by calling some of the places jim listed...?

best regards
jess

[frolicin]

Just wanted to say hang in there and don't give up. They say motion is the key to life. I have heard of RA patients participating in swimming exercises. I know with my scoliosis exercise keeps me out of pain.