Degenerative Arthritis - Need your Advice Please!

[Luann]

Hi all! I am brand new here on this site (although I really should have found it sooner!) I need to ask advice. Background: Had surgery in 1974 at Children's Hosp/Boston by Dr. Riseborough. Harrington rod put in and fused except for last two vertebrae. I have had relatively no problem except for arthritis pain (severe during pregnancy 9 years ago) then ok after delivery until a couple of years ago. Has been getting progressively worse over the past year and developing flat back (leaning forward). After a good night's sleep, I could pretty much get thru my day alright and have not had any intervention or meds necessary. Three weeks ago, after getting up and waiting for the usual stiffness to work itself out, I found it was getting worse, not better. Acute pain, could barely walk, stand or sit. Laying down was my only semi-relief (also had bad cramps (like menstrual and even as severe as labor cramps). Two days of this, then off to my primary care. Went on 1800 mg of advil daily which relieved it somewhat. Took xrays and ultrasound (gyn). PA at Ortho's office thought possible hairline fracture just below the rod - sent for CT - no fracture. Still walking slow and sharp pains, some pain in legs as well. Can't sit, stand or walk for too long - need to alternate these activities to get comfortable. Was put on Medrol Dosepack until I could see Ortho. Saw Ortho today, wasn't very attentive. Says its degenerative arthritis - increased advil to 2400 mg daily and advised to go for cortisone injection. I have also made and am waiting for an appt. with specialist Dr. Rand at NE Baptist who I can't see until March. My questions are has anyone experienced this also? Can anyone tell me what the cortisone shot is like, did it offer relief and for how long (can't imagine a needle in the bone of my spine!) The ortho's PA said one of my discs had slipped forward however the ortho didn't address this today and unbelievably I got too side tracked and forgot to ask him. Does anyone have any alternative ideas I could explore? I'm sorry for such a long blog, but I thought I needed to give as much info as possible. Thanks in advance for your help!! Luann

[Karen Ocker]

Luann:
Search this forum for "flatbackers". Go to their forum and you will get excellent advice.

[samsmom]

Hi Luanne,
My husband had the cortisone injection and it was amazing how much better he was within 24 hours. (His was for sciatica/slipped disk though, not a scoliosis problem) It was a relatively quick and easy procedure right in the doctor's office and he had 2 shots about 2 weeks apart. Be advised though that you are only able to get a max of 3 shots!

Good luck to you.

[Luann]

Thank you both!

Thanks for the advice to go to the "flat backers" Being new, I have no idea on navigation of this site yet...

And Thank you for the info on your husband's cortisone injection. I'm glad to hear it brought so much relief and hope mine does too!
Luann

[rainbow2010]

My case is very similar to yours. I ended up having to have part of my fusion removed (extra part that had grown on its own) as it was pressing on a nerve. I got relief from that for a short time. Now having a great deal of problems due to severe arthritis and a few discs degenerating. The shots were nice, they lasted a few months. My doctor said no more than 3 in one year and no more than 5 altogether. I ended up having facet joint nerve abutalation done on 5 nerves to ease my pain. I found a fantastic ortho through this site who has handed my case off to pain management doctor that believes there are better thing to relive pain than being spaced out on drugs. I go to a therapy pool where they keep the water at 90 degrees to exercise. Walking in warm water is a great relief for pain. When I am at home, I use a heating pad.

[Linda W]

I am a patient of Dr. Rand

Luann,

I thank God every day for Dr. Rand's vision, skill and gentle and kind demeanor. I know our situations are different, but I have spoken with several of his patients and they are all thankful for having him. He is honest and straight forward and will tell you that you, as the patient, are in the driver's seat in making your decision based on your personal goals. I originally had surgery scheduled with the spine chief at MGH and took a second opinion with Dr. Rand. I knew within 5 minutes that Dr. Rand was the surgeon for me.

I have been the cortisone route prior to meeting Dr. Rand. Relief was very temporary and ineffective for me, but it might be worth a try to see if you can get a bit of relief.

Good luck in March when you have an opportunity to meet Dr. Rand. His practice manager is also helpful and very nice. You can certainly ask him about patients he has seen that are similar to you. He gave me three patient names to contace. Please feel free to send me a PM if you would be interested in chatting with me.

Linda W.

[cammaltby]

Hi Luann,

I am also a patient of DrRands. I had revision 3 years ago (old HR retained, extention of fusion from L4-S1, 2 cages) February and have had a very good outcome. Of course life is not perfect fused to the sacrum but it is a heck of a lot better than tipping forward in agony whenever trying to walk somewhere! I am painfree today.

The events preceeding my surgery sound similar to yours. My local ortho really didn't have a clue. Did the medrol packs... and they didn't do much at all...they just made me feel like I was doing something while waiting to see DrRand. When I finally got in to see him he told me that the epidural steroids were an option for me, and that while they couldn't really hurt, they were likely to be of minimal help and probably to be thought of as a stop gap at best. Since I really wasn't ready to commit to the surgery right away I did go ahead and have them done with the doctor that DrRand recommends there at NEBH. I recall that he told me DrHall "never misses". Great! In fact, even someone with this much experience getting around my very fused spine made several approaches before he got into the space necessary for the shot to even have a chance of working. If you can stand it, it might be worth waiting until you see DrRand and have this procedure done there. There was no delay in getting it scheduled once I decided to have it...except I believe I had to have an MRI first.

The first ESI took about a week to get to it's full effect, which only brought the pain back to maybe a 5 and it lasted about 2 months. I used that time to schedule my second opinion and get cranking on figuring out how to get surgery done in the near future. My second ESI started wearing off much more quickly, after only 4-5 weeks...by then I was a few months away from my surgery date...so I never bothered with a 3rd.

If you want all the details, my "story" is under my name in the "Members Stories" section of the "Files" at another group:

http://health.groups.yahoo.com/group/Flatback_Revised/

It will be worth the wait to see DrRand. As Linda said, he is top notch and dedicated to his patients. Every time I came in contact with various medical folks at the hospital they all reaffirmed what a great surgeon they thought he was. That was comforting. I figured if they didn't have a good opinion they would have just said nothing.

Good luck!
Cam

[Luann]

My Visit with Dr. Rand

First, thank you to Linda W and Cam!
Cam, it sounds like your case is very similar to mine and I appreciate your sharing your experience. After I post this, I am going to straight to your story to read...
Sorry for the delay - I haven't been on the site for a couple of months!
I saw Dr. Rand last Thurs. My local ortho has no clue! Dr. Rand told me it's defnitely disk related (the pain) and my non-union at L4 has slipped forward. My choices are (per Rand) steroid epidural which he questions if I'll get relief from since the Medrol did nothing and facet blocks. He didn't mention the pain mgmt folks there but said to let my pain mgmt that I had a consult with know what the recommendation was. Since PT has been helping, (ever so slowly though ) I may try the facet block. I'm so tired of walking gingerly and taking advil and not being able to bend or lift...yadi yadi yadi
As Dr. Rand puts it, when the "owner" knows it's time to have surgery, he would fuse the rest (L4 to my sacrum) which would take away the pain but obviously decrease mobility. However, he aptly pointed out that I don't have a lot of mobility now as he asked me to bend to each side and I barely move an inch either way.
Not sure whether to go for surgery while young or God forbid wait and have it when I'm 20 years older.....
Thanks for all your input!
Luann

[Linda W]

Glad to hear you saw Dr. Rand

Hi Luann,

I am happy that you finally had an opportunity to meet with Dr. Rand. I cannot say enough good things about him! He is very conservative and wants you to be 100 percent on board with surgery before he will schedule you. In my case, he did not promise me that I would gain back any of my lost height (4 inches) because his concerns were to decompress the nerves that were causing all the pain and numbness in my legs, butt, hip, etc. and to stabilize my curves from advancing. He accomplished goals one and two and I regained 3 inches of my lost height!

I have found him to be generous with his time and have never felt rushed by him during visits. Only you can make the decision of when the right time is for you. I was 57 at the time of my surgeries, and believe me I was more than ready to take a qualified chance to rid myself of the constant pain. I am glad I did not wait any longer. I am fused to the sacrum, and yes I have had to adjust how to do some things but most of those things I could not do very well by the time of my surgeries.

Another of Dr. Rand's patients "Loves to Skate" aka Sally had her surgery at the age of 68 in December. You can find her posts over on the Surgical First Time section.

Good luck making your decision.
Linda W.

[MGH 1970]

Dr. Riseboro patient too

I was also a patient of Dr. Riseboro's - though in 1970 when he was at MGH. He administered 2 cortisone shots about 1 year apart to the area of my bone graft around the sacral iliac crest(?) joint(?) when I was experiencing pain that interfered with playing field hockey in college (7 years post surgery). The shot was helpful though I recall that he didn't want me to have any additional shots for reasons I have forgotten. I too have begun to show signs of arthritis on my spine directly beneath the harrington rod but I haven't experienced any discomfort (yet) - I do have significant discomfort from the site of the bone graft. Best of luck to you. (not sure I am following the proper format since this is my first posting...)

[myachingback]

This helped my joints!

Over the counter! Glucosamine 1500 mg. morn and nite,
Chondroitin 300 mg " "
MSM 120 mg " "
I did that for 3 weeks, then went to once a day. It changed my life. You can find this in a combo pill at Wal Mart, Dollar General, Fred's Dollar Store etc.. Basically the same thing as in Osteo Biflex but at 1\4 the cost. Check with your doctor to be sure it won't react to anything you take now! My wife was talking to her dentists assistant and she told my wife her elderly mom could hardly walk due to aching knees or open a coke can and had lots of pain, after the above she is experiencing a world of difference. Can't guarantee it will work for you but it may be worth a try! Good Luck!
Chris