Repeat injections?

[Emme80]

I had both an Occipital Nerve Block and Trigger Point Injections that were done in upper cervical area done last Wednesday(Feb. 3rd).  I literally have felt no difference. The only big thing/feeling that's happened since then was a major neck flare up (it was very harsh- neck felt like a swollen brittle tree trunk that I truly wanted to rip out. It hurt reaching about a 9/10 kind of flare up). But I literally have had NO change, cannot tell one difference since the shots. Now, I'm aware that they can take sometimes a week to start "working". So, I'm holding out hope that there's still a chance for the injections to do @least a little something! I'm just a bit worried b/c I can't tell one single difference. The back of my head (an area the size of a baseball), to the right of the surgical incision, is just as angered, painful & irritated as it was pre-ONB (I do wish I could just get it numbed every single day..that was nice I'll say-to catch a little beak w/it being numb for that day, of the injection!). My neck...definitely the same pain, if not more..and that, I don't understand. Perhaps the extreme flare up over the weekend hasn't calmed down yet, but even right now, it's overwhelming. The only thing that's helping a little more, is that the PM clinic decided that the previous PM clinic's decision to take me off all pain meds was a poor decision. They put me back on a ER /LA med. as well as a short acting med. as needed. That is at least keeping me from staying curled up in a ball on my bed, trying to stay as still as possible. But that was prescribed on Monday. Even with being back on the meds., to help manage the relentless pain (and perhaps give ease to domino effect of the the pain causing great stress on my body, the muscles cinching up further & further, to "guard" the neck& head pain,which causes more unneeded pain, etc). So, while the meds. I can tell have helped a bit, I think they may need adjustment in the future-especially of these injections won't work.
SO, my question(s) is- would I know by now if they were working? If they've not shown any kind of improvement, will Dr's generally still try a few rounds (of both- the ONB and the trigger point injections) before they "give up" on injections? I'm hoping that he'll still go for more, as it would be GREAT for them to work! And are there different kinds of materials(medicines)  they can try/experiment with in hopes that one will work? I'm a little frustrated that there's been no success thus far... Especially discouraged by the ONB not working....ok, equally discouraged by the trigger point injections not showing any kind of working either.
Any experiences one can share about this kind of situation?
Oh, I'm curious too... My Physical Therapist said that many patients w/EDS, the Trigger Point unjections don't work so well/if at all for them-that's me...I've EDS.
Any experiences or info. is greatly appreciated!
~emme~

[Tuckamore]

Emme, you're description of your PMP brought tears to me eyes. He sounds perrr-fect! He's exactly the kind of PMP we all should be so blessed to find. He's a keeper for certain. There are not many like him. However he proves that this new opiate phobic climate is just that - it's not the law - it's guidelines. Unfortunately many of our Physicians are scared to death that they will become a target of the DEA - FDA - or other government watchdog agency. An educated, responsible and compassionate PMP knows how to properly document and treat true Chronic Pain patients. It's just that so many don't want to be what I call a "real" PMP. There are Shot Jocks, called Interventional Pain Management Physicians that make huge amounts of money. They do a standard protocol of procedures and treatments that bring in big bucks but don't always help their patients. One size does not fit all! So often when their standard protocols fail the patient is dismissed and told to learn to live with it. You have been blessed with that one in a million PMP. I am extremely happy for you in that respect

If my last comment was misleading I apologize. I didn't mean to insinuate that because the medications did their job and numbed the area - that it wasn't effective. Let me try again to explain what I meant.

Normally before doing a Nerve Block the practitioner must locate the nerve that is causing the pain. That can be done in several ways - but it most always involves numbing the nerve. When the nerve is numb your pain should be significantly and sometimes completely gone. When this occurs the Practitioner knows he/she has found the cause of your pain - the "right" nerve. However when it come to the greater occipital nerve(s) they will usually use palpation (touch) to locate it.

There are two greater occipital nerves, on each side of the head. Emerging from between bones of the spine in the upper neck, the two occipital nerves make their way through muscles at the back of the head and into the scalp, supplying feeling (including pain) to a good portion of the back and top of the head. The Practitioner will usually palpate the scalp to locate the nerve before injecting the medications. Usually they inject a local anesthetic with steroids. You notice I am saying "usually"  often as I discuss this procedure - obviously each Practitioner may preform the procedure a bit differently based on his/her beliefs and practices and/or the situation.

Occipital nerve block (ONB) is also used to treat different forms of migraines. I've recently read some studies on ONBs. One "study" was completed by reviewing 21 different articles and studies and was very enlightening. It said that ONB is either ineffective or only effective under as yet unstudied circumstances for hemicrania continua (chronic head pain or headaches) and chronic paroxysmal hemicrania.

My research also stated that in patients with "Occipital Neuralgia ONBs (local nerve blocks and steroid injections) are utilized on a short-term basis. it may take 2-3 injections over several weeks to get control of the pain. It is not uncommon for the pain to return at some point and to need a repeat series of injections." This tells me that your situation does not seem to be abnormal. If your Practitioner suggests repeating the injections that would be expected and probably worth perusing.

Yes there are other nerves in the head beside the primary Greater Occipital Nerve(s). However the other lessor nerves but they are not usually the culprit. Did you know that Occipital neuralgia is a distinct type of headache? I didn't know it was classified as such. It is characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head - though it can be bilateral.

Is the fact that they are not using steroids impacting the effectiveness of the injections? I think that's your concern. Yes it's possible. I think your PMP is the person to ask the question - and the person I'd trust.  

Hang in there Emme. I believe you are in good hands now. I'll look forward to hearing from you again soon. My best to you!!

~Tuck

[Tuckamore]

Hi Emme,

I've been absent from the community for a bit - and am just catching up. I am so sorry to hear that nothing has been successful in treating your pain. My heart goes out to you!

I am stumped as to why the Nerve Block didn't work. I do know that they must locate the "right" nerve to inject in order for it to be effective. That's usually done pre-block by an injection of a numbing agent. If it "numbs up" and reduces the pain they have located the "right" nerve - or location. If in pre-block trials it doesn't numb or the pain isn't reduced than they most likely haven't located the exact spot. Did you find any relief in the trial runs?  

Sadly if they haven't located an area that responds to the injections I too doubt that repeating them will be helpful. T

rigger Point injections may provide some relief - remember Trigger Point injections are usually done in/for soft tissue pain.

I wish I had better answers for you. I can imagine you are very frustrated and discouraged. I am so sorry!

The good news is someone is treating you with opiate therapy. Sadly that may be your only relief - until this condition resolves. For many of us opiate therapy provides the only form of pain management that is effective. There are not always good reasons why this is true.

I know it's depressing to consider a life of long term opiates and the stigma that many place on those of us that require it. Hold your head high girl and never give up hope. Keep reading and searching for options. If there doesn't seem to be any positive options right now it doesn't mean that one day there won't be. I think many of us live with that hope. If it helps, you are not alone.

Please keep posting. I hope being able to vent and share your struggle helps. That's what our community is all about. I'll look forward to hearing more from you! Hang in there!

Your friend In Pain,
~Tuck

[Emme80]

True, I feel VERY fortunate, to have found this PM Dr.
Everything I imagined a PM Dr. being (rushed, overwhelmed, no time, doesn't want to hear about your history, don't speak about anything that he doesn't ask you, impersonal, on edge, stressed.... Etc. I was scared! Especially given my 1st PM experience. But this PM Dr, exact opposite! He took about an hour just getting to know me, a little about my life in general, (hobbies, likes, etc) as well as what led to the Chiari Decompression surgery...what he expressed he knew & DIDN'T know about my condition (he still knew more than many Dr's I've met- but given I'm his 2nd ever Chiari patient, he wants to learn more from me, as well as doing research on his own!). He spent an hour going over "getting to know me" and going over my OVERALL health (besides the pain element). Then a second hour going over my CT scans, what he thought might be happening, treatments he wanted to start with, what may/may not work...but emphasized that "we're now a team" to get me (his goal) "as comfortable as possible so that I can continue with a life I can participate in! He seems...well, he expressed his disenchantment and let down in the way PM is approached now. He's against trying all these new meds., esp. the use & switching around of anti-depressants (I gave a fair shot a many, but I really don't like them!). He said that Dr's are pushing all these newer meds. which can have detrimental side effects...some of which he feels we may find even worse long term side effects in years to come. According to him, there IS a proven medicine that has been proven to be effective in at least managing pain, for which we have vast knowledge about- for which we DO know long term side effects, etc., which is opioids. He is saddened by the stigma. He hopes that there is a way to manage my pain in another way- but until we find such a way-that proves to be effective for more than a few months at a time, he said I should remain on opioid therapy.
So....I'm very grateful for an open and honest and...a Dr. who will be a warrior by my side, in this "teamwork".
Question: so, I did have ultrasound guided nerve block that they asked if/when I felt numb. It w/o fail, takes me forever/takes a LOT for me to get numb-even as a child&all through my adulthood, dentists were/are always amazed at just how much it takes to get me numb(my father was the same way...this issue is directly related to EDS) But it did take a lot & awhile for me to get numb. But it finally started to go numb. (Fulllll numbness started to build up AFTER the procedures). The ONB was done by use of ultrasound...after they got me numb, then they injected around nerve.
So, since it DID go numb, it should've worked?
Could it be that there's a different nerve that's damaged vs. Greater Occipital Nerve?
Also, due to my 100% bad reaction to oral steroids, he wasn't going to use any. I spoke to him, requesting that w/the knowledge that it doesn't circulate through the body the way oral steroids so, as well, he said with a normal injection, the ammt. of steroids is quite little. So, upon my request, I asked if he would use the steroids-but he said he would only use much less than what is normally used...
Could that perhaps be the reason it wasn't truly/fully  effective? I think he wanted to know how I reacted to the very minute ammt. of steroids. But perhaps, if I got the normal ammt., might that be a possibility of reaping it's max benefits? Or perhaps just that it's not the "right nerve"?
It's got me discouraged. I'm hoping he'll give it another shot (honestly, that perfectly placed pun was not intended, but it certainly is befitting!)
I was told the TP injections specifically may not be as effective for me due to the EDS. He told me that at 1st visit. Ironically, my PT mentioned this to me too, later that week- w/o me mentioning how ineffective shots were.
I hope they're willing to give the shots another go around!
Just wondering if lack of steroids rendered them useless....
If it's all the EDS?
If perhaps it's NOT the "Greater Occipital Nerve"? Are there many other nerves that we can "attack"?
So many questions, I know.
I do want to say I feel fortunate and blessed by this Dr whom is kind, caring, soft yet confidently strong, willing to treat w/opiates b/c in his eyes, it's been the best, well-known/understood, proven way of managing pain for a long time. So, to him, don't fix something that isn't broken/works.
I just hope there's a reason they didn't work the 1st go around & that they can try again/try something else...
:/

[Emme80]

Well, I'm into day 10 & I can't tell a lick of a difference from either the ONB or the Trigger Point Injections... :/
I don't know if it's due to EDS, if it's just that repeat injections will work/become more effective or if it's not Occipital Neuralgia.... Disappointed for sure. Was hoping for some relief. Too bad you can't just go get numbed everyday.
Anybody have experience where these injections didn't work the fist go-around, but did work sufficiently with repeat injections? I have zero change since the injections- just a couple flare ups...even more discouraging. Any hope they can w/repeat injections?
Thx. for any insight!
~emme~