I'm seeing a spine specialist on Monday for the first time. Is there anything I should ask / be aware of / think about in advance? I'm not sure how much this specialist knows about PsA.
I had neck and low back x-rays taken last week by my rheumy that should have been sent to the specialist by now.
What exactly are you seeing him/ her for?
I was just going to say go in to the Rheumatologist relaxed as possible ,you probably will get something like Remicade ,an IV every week or two. Or Methotrexate hopefully you wont need anything if you like let me know how it went ,I was only an RN so Im just another patient ,RNs tend to put in IVs for Remicade etc in Rheumy office
Good Luck
Gentle Hug
Mark
I've been having a lot of inflammation in my neck / SI area for the past couple of months. My spine has never been involved before, so my rheumy wants a specialist to check things over.
GrumpyCat said:
What exactly are you seeing him/ her for?
Well, there are a number of therapies for SI pain. I guess you already did PT? Then he might want to try steroid injections into the SI joints. Some people get excellent relief. Since the steroid are temporary, if it works they can do a longer lasting ablation. Same goes for the neck, but it depends on how high in the spinal column the problem is. Of course, there is also surgery. I think that is something that takes a lot of consideration though. If he jumps for surgery then you need a different specialist. As with most things involving your body, try the least invasive approach first. So, ask if there is any therapy you can try, and ask what other treatments he suggests. Ask about what your imaging means for you and if you have any nerve damage and what that means for the long haul. I think that covers it. Oh! Make sure you write down what he says and get the correct spellings, get a copy of the reports from the radiologist for your X-rays and MRI. This way you can look things up when you get home. I hope that helps you with your appointment. I will be thinking of you on Monday.
Thanks so much for the response! Those are just the sorts of things I wanted to know :)
I have gone to Spine. They were able to give me an epidural which helped with the pain in my hip which hip injections did not help with. Turned out I have a lot of damage in L4 and L5. They could do surgery for it but I would like to avoid it but I find getting re-injected rather time consuming. I have PsA in my spine and they wanted to do surgery when I herniated some cervical discs. The problem I have with this if my spine is fusing due to PsA why would I want all these surgical fusions too? I find it all confusing. I walk with a cane when I go very far at all but then rest the next day and stay off of it. I exercise in a heated pool every week and get massages. This seems to work best for me. Good luck, I will keep you in mind on Monday Marietta.
Michael-have you tried a Rhizotomy? That can keep the pain away up to a year?
No just an epidural with steroid and lidocaine. It did last about 6 weeks but then the meningitis out break following epidurals from contaminated meds happened so I did not go back. I really do not have much pain unless I "do" a museum or big shopping trip. What is Rhizotomy?
Same set up as an epidural. Should be done under fluoro. They do the exact same things. Sterilize, insert spinal needles, but instead of injecting steroid, there is a probe inserted into the catheters. Then hooked up to a neurotherm machine which uses Radiofrequency pulses to ablate the nerve endings. Little more uncomfortable than just a steroid injection, but it does last six months to a year. The nerves do eventually regrow, so it needs to be repeated, but its a whole lot better than surgery.
The steroid injections are safe as long as you make sure that your doc uses a name brand drug. Never let a doc inject a med into your body that has been compounded. There is still little regulation on those places.
Also, it could last longer than that, it really just depends on how quickly your nerves grow.
GrumpyCat said:
Same set up as an epidural. Should be done under fluoro. They do the exact same things. Sterilize, insert spinal needles, but instead of injecting steroid, there is a probe inserted into the catheters. Then hooked up to a neurotherm machine which uses Radiofrequency pulses to ablate the nerve endings. Little more uncomfortable than just a steroid injection, but it does last six months to a year. The nerves do eventually regrow, so it needs to be repeated, but its a whole lot better than surgery.
The steroid injections are safe as long as you make sure that your doc uses a name brand drug. Never let a doc inject a med into your body that has been compounded. There is still little regulation on those places.
Interesting Grumpy, I did not know about that. I have hesitations as my spine is fusing. It sort of feels like Rebar or bamboo! I have a feeling the more we do there the more it will fuse but it is at least worth discussing with the docs. They mixed the lidocaine and steroid while I was there so I do not think they use anything compounded. That hospital said they did not get any recalled meds. It just made me realize how vulnerable we are.
Have had the ablation.......Mixed feelongs.
I'm not a fan of spinal centers. They have to produce more billables than the eye docs. Not much evidence they do much in the long run.
They are selling pain relief........... We kmow better than that. Nerve damage/impingement is a different thing. That needs taken care of somehow.
I also have been thinking instead of injecting my hands, fingers, feet, bursa in thigh and spine perhaps I need the disease better controlled before I turn into a pin cushion! So I started Remicade in December and am finally getting some good relief. But for 2 weeks before and after my infusion not so much. I have been asking to get it every 6 weeks instead of 8 but so far my Rheumy says no. I'll ask her again in December. But i am doing ok. No vicodin in three months!
I’m not a fan of spine centers either for the exact same reason. They’re meat markets. Get 'em in, get 'me out. They are making huge amounts of money for doing something in an OR that used to be done in the office.
That said, there are a few of those docs who actually do a great job. I know one that I really respect and trust. He won’t inject if he doesn’t think it’s appropriate. He’s incredibly gentle and takes his time talking and educating each patient before he does anything. He’s a really good guy. Some docs will schedule these injections every 15 minutes all day long. That’s 15 minutes per patient. His shortest appointment is 30 minutes, but that is to inject one level.
That’s awesome Michael. I’ve actually had my same bottle of Percocet now for a whole month. They used to last me two weeks. I’m being a lot stingier with them. My doc said if I could make that bottle last a month she wouldn’t make me see her to get a refill; just pick the rx up at the office. It’s made me get better about staying on top of my activity and stopping before I hurt instead of an hour or two after.
I often keep a diary on the run up to seeing specialists, just jot it down day by day then revise it so its an easy to read table of month by months so the docs can see the progression of the disease. Here in the UK the docs send a copy of the write up they put in your file to you and your GP, but not all docs give a very detailed clinic letter so as Grumpy says write it all down or if you’ve got someone with you get then to do it…One person I know records her session on her phone but not sure many docs would like that. I still find my TENS good for my SI pain, although it does nothing for my upper back pain at all however I’ve gigged around with the pads and settings. Good luck x
Update on my spine specialist visit.
I saw the specialist yesterday, and she did a full exam. I've got an MRI scheduled of both my neck and low back. She *suspects* based on the exam that my problems are unrelated to the PSA, but she won't know until my MRI comes back.
For my low back, she suspects a slipped disc. For my neck, she suspects some spinal compression due to my extremely quick reflexes.
I'm hoping it is simply some inflammation in both areas. I don't want to deal with anything else. My spine is the ONE AREA of my body which has never been affected by my PsA. It's made such a difference over the years to be able to sit or lie without back pain, when everything else was hurting. I'd like to ignore this whole thing, but I know it is better to catch problems up front.
Oh Marietta that is quite the load. I am sorry but you are right it is better to know what you are dealing with. For what it is worth I would be surprise if PsA showed up in your spine at this point. I know that isn't much comfort I will keep you in my thoughts and prayers. I hope it is mechanical and PT can help. I also suggest xanax or lorazepam for the MRI. I had the first ones with xanax and it went so well I did the last ones without it. I think my fingernails are still buried deep into the metal of the table......never again, just horrible.
I've had a few MRI's before (head, knees), so I think I should be ok. I just get REALLY BORED in there. And my body stiffens up. I'm pretty good at forcing myself to relax on demand. A lifetime of medical problems makes that a necessity. I have my freak out in the car in the parking lot before I drive home :)
michael in vermont said:
Oh Marietta that is quite the load. I am sorry but you are right it is better to know what you are dealing with. For what it is worth I would be surprise if PsA showed up in your spine at this point. I know that isn't much comfort I will keep you in my thoughts and prayers. I hope it is mechanical and PT can help. I also suggest xanax or lorazepam for the MRI. I had the first ones with xanax and it went so well I did the last ones without it. I think my fingernails are still buried deep into the metal of the table......never again, just horrible.