I have had GCA for over four years and was attributing my back and leg and foot pain to PMR. I have been trying to reduce my prednisone and am now at 10 . I had an MRI and have been told by two orthopedic surgeons that my back is a mess and that I need a fusion and a lamenectomy . This is a four hour surgery. I am almost 80 . I know you cannot take the place of my doctors but I have had better advice on this forum than I have had from the medical community . My regular doctors have just loaded me up on pain meds while also insisting I reduce the prednisone . That also has consequences . Up until now the major concern was with my going blind. I have had two episodes of my optic nerve leaking. I am blind in one eye and the other good one has been the recipient of the leakage. My " golden years" are getting messy :). Any advice would be appreciated. I realize I have to make my own decision and live with it but other people's viewpoints are always helpful . Thanks.
Has anyone had back surgery?: I have had GCA for... - PMRGCAuk
I think doctors are rather loathe to do surgery if you are on steroids. Although I did read that some are happy at around 7mg and lower. I suppose the lower the better, as far as they are concerned.
I am so sorry things are becoming so complicated for you now. Is your GCA under control? My priority would always be to preserve sight. Have you had any other recommendations regarding back surgery, which too often is unsuccessful? Remember, to a hammer, everything looks like a nail. Have you seen specialists other than surgeons for your back?
I hope you get satisfactory answers soon. Best wishes.
Thank you both for your quick reply. I did not expect that picture to be SO big.....obviously that is my daughter with me. I honestly do not know who else to see...they both do other things .... Physical therapy, epidurals etc.....so are not just surgeons. I am in so much pain that I can hardly walk and am not upright ( think Neanderthal ) until noon. One of them declared it an emergency .....the second one was less excitable but still said it needed to be done.
Owch. Obviously something needs to be done. And it's excellent that your doctors have broad experience. I remember my stepmother having severe back pain. I'm pretty sure she had surgery and it helped to some extent. If the nerves are being affected enough to cause debilitating pain you certainly must do something to get relief. All the best....
I have had two major surgeries while taking steroids - a new hip and a new knee, the latter in May this year. Steroids caused me no problems, but I think you are in the US? In the UK the protocol is different.
That is encouraging . Thank you. What dose of prednisone were you on ? And how long were the operations. ?
Hi it's nice to be able to communicate with someone who has similar problems . I have had problems with back since 1997 when they done a laminectomy that went wrong a piece if fragment was left behind trapping a nerve they removed that but the nerve never healed and now I need another operation ie laminectomy but I am not happy about it the back doc and my transplant doc (have a kidney transplant )have said its my decision and they would be there all the way but not over happy about it
As I am 70 and now on my own I feel I don't want to take the chance have put up with pain for years and managed to cope .as a friend of mine said jockinly you are alive
But I do understand how bad the pain can be but like you said every one is different and at the end of the day it's your decision very tvery hard
Please let me know how you get on take care
Goodness....what a bummer! I guess your experience is the reason everyone is so cautious about having surgery. I am truly sorry that you had such a bad outcome. Picking the right surgeon is key but that never is completely knowable. I am trying to do my due diligence in that regard. Thanks for your input. I know I will come out asking if they got every little piece
Hi I'm 57 years old , I had back surgery 4 years ago ,I was bed risen for two years through severe pain and total immobility, I am a registered nurse working in primary care , I also have PMR and was on 30mg prednisalone daily and developed eye problems including cataract in one eye ! I had a laminectomy X2 disc removals , L4/L5 fusion , removal of three nasty cycts form from spondylilothesis grade 4 a fusion cage and plenty of stews (none loose as yet LOL) my recovery from surgery was great , within 3 months I was fully functional again , I discontinued prednisalone on a decreased regime, my cataract has now disappeared, my mobility has improved , apart from loss of feeling in my feet ! I have since developed Rheumatoid arthritis and taking DMARDS . No longer taking prednisalone daily , taking depo mederone injections every 3 months . I have retinal checks and reviews every 3 months due to DMARD side effects . As for back surgery , go for it , stay positive it is very effective . Stay well brave lady life is for living well , not dreading negative outcomes .
Thank you for that. I really appreciate people sharing their outcomes. I will stay positive as that is my M.O.
Are you in the USA? If so I might be a bit sceptical about the need for surgery. There are plenty of studies from all over the world that suggest back surgery should be a very very late resort - so seeing someone who is less enthusiastic about surgery might shed some light in this. There is evidence that many surgeons do unnecessary procedures - that is certainly the case in Germany, another country where the funding follows the patient so hospitals that are short of money look for well-reimbursed procedures to do, sometimes whether needed or not.
I do hope you can find a way round this - much back and foot pain that is due to a pinched sciatic nerve may be due to muscles doing the pinching, not the spine/bones. Many of us have had relief of such pain through Bowen therapy which is basically chiropractic for soft tissue, is very gentle and may be worth investigating first.
I too am from the states. 19 years ago had a slipped disk that pinched my sciatic nerve. The outside of my right leg never regained much of its feeling but with going to a chiropractor and massage the pain went away. I still cannot bend in a certain position for very long without pain. But I did not have back surgery. Now with PMR for over 5 years my back again is bothering me, also my hip. I am going back to my chiropractor. I am wondering if I should also increase my prednisone for awhile from 7 to 10?
Not sure if it will help unless you can get the cause addressed. I found I got stuck first at 10mg because of similar problems and then later 8mg - so I suppose it should help a bit. The trouble is you have to then get back down again - I was in the reduction stage and it just got held up a bit.
Thank you. I always look for your replies as they are well researched and thought out. I have seen two surgeons....( I know..have you ever met a surgeon that did not want to operate ?). My MRI shows not only a pinching of my spine to almost no space but a collapsing of my vertebrae on top of one another. The first surgeon kept repeating....this is an emergency ...although she is known for using other methods first. The second surgeon did not feel like it was an emergency so much but it definitly needed to be done. They are both sports orthopedic clinics and do a lot of physical therapy as well. The second clinic has all the sports stars in LA including the new hotshot pitcher for the Dodgers. I do not think they need me.
My biggest concern is having a flare and my optic nerve leaking again. I think that the prednisone has been masking the pain to a certain extent and it is the insisting on my reducing that has forced me to investigate and even take my MRI to anyone. They ( my rheumatologist and primary) knew I had severe stenosis but really ignored the fact. I had an epidural and it did not work and that doctor , who was not a surgeon said I needed surgery. I am now on ten milligrams from 12 and was supposed to go slowly down to 71/2 . I have used the slow method. But only tried one day at 9. Again, thanks for the input.
If you still have concerns...please let me know. I value your opinion.
Spinal stenosis is another thing altogether - and I do appreciate how much pain you must be having. But before reducing very far - bear in mind there will inevitably be rehab to do and a lowering of dose may well result in a return of PMR symptoms which will make that rehab difficult.
Otherwise - all the very best.
Very similar to me, except I have been on pred. for 3 years-it was not until I found this website with it's so very helpful fellow sufferers that I have managed to reduce to 10 now. I am also just 80.Scuba Diver until 3 years ago! Just as I was getting to grips with it, Sciatica! Pain so bad even on regular 3-4 time a day dose of pain killers that turned out to be Spinal Stenosis! - pain killers not working, the Specialist has referred me to a Orthopaedic Surgeon for Surgery, and I am on 10 mg!- I shall have to see what he has to say .I have not a late CPR reading but my ESR is 2 - parameter 2 -40. and I am a fella! But I am going along with FlugelGirl1 ,watchful at the same time but I have to try to reduce this pain and at times drag my left leg ,reduce the pain killer intake and get my stomach back. All the best wishes.............. John
What kind of dental work.....may I ask? It certain could be very stressful.
I would think you would be okay. Novacaine or twilight sleep ? You just have to worry about the stress factor. Everyone is different but i would take a tranquilizer to calm my nerves.
Hello hope you are feeling as best as you can today
I am 72 so not quite as old as you
But I have similar problems to you the difference being they won’t operate on me I believe due to kidney transplant and I am in af
If I had not. Been for These problems would I have gone for the op I’m not 100 percent sure as I had a op in 1999 which had problems and left me with scarring
Yes you are right it’s your choice and I feel for you if you go with it please let me know
Living with this pain and being unable to walk is not nice and I wish there was someone in the plymouth area of the uk I could have a chin wag with
I will be thinking of you take care june
I did have a spinal fusion and it all worked out very well. The pain is gone...I can stand up straight . It was done through my back ..do not remember the term for it ...small incision anyway. It thru off my other side for awhile but that has cleared. I had an outstanding surgeon who specializes in sports medicine. Name is Robert Watkins the fourth. He is in Marina Del Ray Californua,