[lailavia]

ok I saw my endocrinolgist about my recent ACTH stim test, re: the cortisol levels being really really low and she put me on cortisone pills and said NEVER get cortisone injections again...they can severely suppress your adrenal gland...I have to stay on the pills till another stim test,,,,then they decide if it was all the shots or part me or whatever...they are acting like it was most likely all the shots....but you know....what if mine were low to begin with...I mean I was being tested. She said those diseases are really rare,,,,,well I was having freaky sx so I will let you all know what comes of this. I think she was testing me just to reassure me at least for once someone did the right thing at the right time....Something to definately ask the docs about!!!!!!! I have to double my dose if I get a cold or flu and an iv hospitalization for any severe stress or crises!!!!! Whats up with that . And the shots did help my pain alot so far too....is there anything else they can inject......

[kimlisafreeman]

Hi Lailavia,

Sorry to hear about the terrible side effects you are having from the shots. I also discovered something terrible about epidural shots and just wanted to let everyone know too. The docs NEVER told me of this risk when I got these shots. I guess b/c no one would problably get them and they would lose money then. Anyway, these shots could potentially damage the arachnoid sac of the spinal sac that surrounds our nerves. The dural is the outer most this sac and the arachnoid is the inner most layer. If this sac is damaged by a needle, inflamation can insew and this can cause your spinal nerves to clump; perhaps resulting in arachnoiditis where your nerves stick together and cause SERVERE, CRIPPLING pain. Symtoms include servere lower back and leg pain - stabbing, burning, stinging pain that is constant. The same pain can also be felt throughout the body as many nerves are affected by this affliction. So please do not get these shots. I know they have helped some people, but this a serious risk and trust me, you do not know the pain! I had a spinal fusion and I am in so much more pain now that some days I can not walk at all (even with pain meds)...you can do your own research and see for yourself that these shots are VERY DANGEROUS!!

[lailavia]

Kimmi,,,,just another reason not to get the shots... I hope people see this post I still have to tell my spine doc about it and in the meanwhile I am severely depressed from being on this cortisone but they said do not stop taking till they tell me then I still have to taper!..

I am so very sorry for your pain...that is awful....when and if this shot wears off I wonder what they will do for me...I was trying to weed in my garden the other day and I can not do that....any squatting or stooping or bending bought the pain back....the shot did help alot though...I hope somehow you can find some better relief....some different meds?

[Bobbi]

I think something that needs to be said, too, is: Steroids, and other meds., used while the shots are done, do not have the same effect on everyone. Not every person has the same response, felt effects, etc.

Also, many PM procedures can be done without steroids. Just ask.

Kimmi, there is risk of what you've written about, only, the risk is significantly lessened when a C-Arm or live-guided x-ray is used. If it's not, I'd never have any injection.

I'm sorry that where you had injections the risks were not pointed out to you; they were to me, and to many, many others whom have not encountered damage or punctures or slippages (whatever one wants to call it).

Anyone whom is not fully aware of risks should not sign a consent form. If something seems confusing or if-y or just is not clear: There should be no pressure to give the okay. Find out all one can before saying okay or forget this.

Injections: very few have had the type punctures that you are mentioning.

Many, such as myself, do suggest that patients never permit a doc to do a "hit-and-miss" with a needle, any needle. That's why use of fluroscope (C-Arm or whatever terminology one prefers for the exact same thing) is so crucial. It is plainly foolish to sign off on a "blind" approach and, actually, no excuse for it - for people seeing our messages.

People looking for info. about procedures can do searches and find plenty of info. from patients.

As long as one has internet access, a person is fully capable of also finding that many patients have warned against getting injections in the absence of fluroscope.

If the procedure just doesn't sound right, don't do it - at least until one is fully informed. It isn't right for all people. But patients are not leaving in droves paralyzed or "damaged."

Speak with your docs, talk with the doc's staff, ask other patients.

Doctors whom do procedures without the use of fluroscope are just barbaric. There is no reason for it.

Steroids do have side effects, as do some of the other medications used in procedures. Ask your doc what medications will be used and also ask about possible side effects and interactions with medications you are taking.

Accurate information is better than hysteria.

[Kathi49]

Thanks Bobbi!

I am glad you mentioned this. I have had injections since 2003 and have yet to have something severe as Arachnoiditis develop. The amount of steroid too, I might add, is very miniscule. And I would much, much, much prefer an injection over handfuls of meds. But that is me. And you are right...no flouroscopy = run for the hills! Just don't do it!!! And people need to remember too...these are diagnostic injections as well...not just therapeutic. And there ARE side effects with steroids, that's why a GOOD doc won't give injections just one after the other. If anything, mine are months apart. Anyway, you are right...no need for hysteria. I don't see droves of people leaving the spine centers either.

And just for the record. I just got off of a Medrol Dosepak. I hated it for various reasons. The injections NEVER do me the way the dosepak did. Not only that but my PM has said many, many times...most of the meds just won't get down deep enough to get to that type of neuropathic pain or rather the nerve root.

But going in blindly? No PM I have ever had has done that. They always use flouroscopy, limit the amount of injections and then take it from there...an RF or some other kind of procedure.

[lailavia]

Now I am a bit confused....my doc did do the procedure with the flouroscope....so no worry there really...and I did ask about the amount of steroid..how it would affect you vesus say taking it orally and he said sometimes it affects you if it gets into the bloodstream, but it shouldn't and to let him know if I feel "weird " . So then. I had 2 shots a week apart then a third 2 weeks later. I was under the impression they would possibly do a 4th if necessary....but that would probly be it for the year....not sure on that part....then that is when I just happened to be tested for the cortisol and the endocrinologist said they are seeing this more and more......she said not to get them.....but she cannot be sure if it was the shots, she is making that assumption, my corisol may have been low.....how would they know????? The last time I had a random one it was fairly low.....so I just wish it had been tested before the darn shots....the endo said it could take months to figure it all out but I am having the stim test repeated in 2 weeks and she said that should tell her something...You can google that it is possible re: the adrenal suppression....but no,,,,they did not inform me that something that serious could happen.....Unless i missed the fine print...it seems it should at least be pointed out so people are aware....I got a lot of relief from the shots and am really upset if I cannot get them again. I would rather not take handfuls of pain meds either. HOpefully he can find another alternative but I am too tired to find out right now.

[Bobbi]

Steroids, used in the injections (PM procedures) can cause adrenal suppression, and can also throw off a female's monthly cycle.

Punctures are a risk minimized by use of Fluoroscopy.

If these things haven't been covered prior to a PM procedure, it is something you can point out to your doc and mention that something should be included for patients - either in the patient info. or during discussion pre-op.

[lailavia]

Bobbi, are you saying that they can cause adrenal suppression (the shots) in some people and not others? Just wondering if you knew....I know you had problems...I don't think I would have the nerve to tell a doctor that he should "include" something in his literature.....I will tell him what happened to me,,,,,,this is like one of the top Spine Centers in Maryland....I just am too shy to take that approach....though it should be done! How many people are walking around with suppressed adrenals....???? Oh man this cortisone is making me evil..........one wrong look or word and I totally flip out and start yelling, crying, or screaming...the doc lowered my dose a bit but that was it. ITs not even that much,,,20 mg cortef daily = 200 mg prednisone....if I even got that right...I probly skewered it but am not sure if it affects the same...and soooooooooo depressed....comes in waves though.....not constant...YUK YUK YUK...

[Bobbi]

Yes, that is what I am saying. There is more that factors into whether a person feels the suppression, in addition to the pacing of the injections that include steroids. For instance, mine were not done on too "tight" a time-frame. I have autoimmune disease to start with. Other people? maybe there are other health factors that deserve consideration.

I'm just a patient, and haven't all the answers.

I only know what I experienced, and not due to any mess up on my doc's part or on mine. Just having a sucky health system going in was ample to fuel more probs. My body is now back to normal, and it did take several months and no injections or medications with any type of steroids for my body to get itself back on course or "normal" (readings for FSH, Estradiol, etc.).

Myself? I am also quite reserved and shy - in settings outside my comfort zone. But, if there is something that can help others (and help them avoid the turmoil I faced), I do get gutsy and speak up. Maybe if someone else would have, I would not have been through such a roller coaster - of emotions and tests that actually were not necessary (to rule out cancer of this and that type because hormones were in chaos thanks to? steroids used in PM procedures).

Maybe if someone else would have suggested the doc's office do a more detailed discussion pre-op I could have "known" and so, too, could my other doctors have considered the effects. It would have spared me a lot of heartache, and I would not have had to hear the pain in my doc's voice when she called one evening about the possibility of cancer. (I didn't and don't have cancer, and nothing will take away the fear and the pain of the roller coaster, which could have been avoided ... if only I had known.)

[1MikeD]

Hi I'm Mike It is a pleasure to meet you lailavia. Believe it or not no one in the world is having the exact same problem you are having. That's right your case is unique just like you are a unique person. You said "my cortisol levels were really really low and she put me on cortisone pills" and you are also not sure if your body is just supposed to be like that. Now think about that for real go back and read that one more time. What does that tell you? I come to the conclusion that you are taking a body and putting an external element in it, why would you do that? Because the doctor said so? What if the doctor is right in her diagnosis? What if she is a genius and got straight A's in western medical school, but what if western medical school is flawed? What if the whole way they approach the treatment of the human body was flawed? My recommendation is to take a step back and reevaluate whose hands and whose philosophy you are putting the health of your body in. If you want my take on your condition it is obvious you have what we in the oriental medicine world call damp heat which can be treated very easily, effectively and safely with acupuncture and oriental medicine.

,Mike