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Trainwreck looking for input; neck problems and Occipital Nerve Headaches

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Posted 7/19/2015 8:30 AM (GMT -5)
Well this is my second Sunday in a row with a nearly unbearable pain level in my neck and a resultant headache. I hate this.
Posted 7/19/2015 9:15 AM (GMT -5)
Hi, countrydad.

You said your phys med doc gives you injections. What kind? What is his training? Does he call himself a physiatrist?

I agree with the other posters about seeing a neurosurgeon for an opinion, but ..

Before jumping to surgery, which may be where you end up eventually, how about trying a pain doctor who can give the many types of spinal injections? A physiatrist can give injections in the hip and knee bursae and some parts of the lumbar spine. Only an anesthesiologist practicing in pain medicine can give injections in some of the places where you may need them. An orthopedic surgeon or rheumatologist or even a general doctor can give injections in the hip and knee.

While the injections aren't a permanent "cure," they can give up to years of relief, and there's no down-time and rehab like with surgery.

I have 2 pain doctors, one is a physiatrist, who, as I mentioned above, can give some types of injections in the lumbar spine. He doesn't do nerve ablations or inject the neck or thoracic spine. He's really good with medicines, ordering studies and physical therapy. The partner is an anesthesiologist who mostly does injections and nerve ablations. He took over my case when I started needing neck injections. I've had injections over the last 11 years, and for the most part they have relieved pain for years for some of my problems and at least months for other issues.

I've had neck fusion surgery too, when I broke my neck, and recovery's no picnic. With your young children, I'd check what pain doctors are available in your area.
Posted 7/20/2015 6:14 AM (GMT -5)
I just looked to see more speficially what my doctor does. It says he specializes in pain medicine. Below is the list of procedures he does. I have an appointment with him on Wednesday.

EMG (Electromyography)
Epidural Block, Facet Blocks
Joint Drainage
Myofascial Trigger Point Injection
Nerve Block, Somatic
Nerve Destruction by Neurolytic Agent
Non-Spinal Nerve Blocks
Spinal Nerve Block
Steroid Injection
Transcutaneous Electrical Nerve Stimulation (TENS)
Trigger Point Injection
Viscosupplementation With Hyaluronate
Posted 7/20/2015 6:51 PM (GMT -5)
A lot of what procedures you listed are the same. epidural block or facet block are types of nerve blocks, also called spinal nerve blocks.

My anesthesiologist doesn't do neurolytic agent ageng (chemical) nerve destruction (aka ablation), but does do the electrical type. Not sure I'd want chemicals.

The list doesn't say he's an anesthesiologist, but if he isn't he shouldn't be doing the ablations. This is what my anesthesiologist pain doc told me when he took over my care from his physiatrist partner. The partner, who is also very good, wouldn't dream of going beyond his training either.

This list doesn't say he works on the neck either, but if he's not an anesthesiologist he shouldn't be doing injections there either.

Before I'd go any further with this guy, with his long list of repetitive claims, I'd ask about his training. Can you call your regular doctor and ask about him?
Posted 7/21/2015 6:44 AM (GMT -5)
Thanks for giving me some tips on things to look for. I found this about him:

He is board certified in Physical Medicine and Rehabilitation, Electrodiagnostic Medicine and Pain Management.

He graduated from a highly regarded university. Not that that would speak to the actual training he received. That list I posted was on some generic website about doctors, so I'm not sure who populated that list or how accurate it is. He hasn't been a bad doctor. He fit me in at short notice and helped diagnose the swelling in my ankles last fall. But he hasn't given me any lasting relief (in fairness I'm not that anyone could...)

I think I will be pressing him for some kind of a change in path tomorrow. The injections he gives me (i asked if they were cortisone and he said no, they are similar though) help for a few weeks. He does have ultrasound in the office that he uses to help him get the injections where they need to be.

Time for my meds. I am certainly not below a 4 today. Which I consider pain free...
Posted 7/21/2015 8:37 AM (GMT -5)
So he's a physiatrist.

I wouldn't let him inject my neck. (I would have until my anesthesiologist said he couldn't do that.)

I love my physiatrist dearly. He's so kind and caring. He does lumbar injections but not nerve ablations, uses the same fluoroscopy machine the anesthesiologist uses.

My anesthesiologist uses ultrasound for finding my forehead nerves for certain headache injections.

Does your doctor work solo, or is he in a pain practice group? If a group, there should be someone with more expertise for any neck injections or ablations.
Posted 7/21/2015 11:25 PM (GMT -5)
Am I allowed to post a website where someone can get relief in minutes from a cold press THCa oil with 65% THCa compound?
if not let me know, as I found it really helped me.

Post Edited By Moderator (nvrthesame98) : 7/22/2015 4:30:21 AM (GMT-6)

Posted 7/22/2015 9:00 AM (GMT -5)
What is next above norco that is extended release? I feel that I am taking norco all day and it is no longer keeping up. I'm seeing my pain doc tonight, so I'm curious how to handle this delicate question. I know they are cautious of people making specific requests. He has only had me on 2 meds; Tramodol (I think that was the name. It was worthless.) and norco. Also, am I right in thinking I should not tell him I am going to consult with a surgeon? Clearly I will tell him I am starting on Humira as he needs to know.

Thanks.
Posted 7/22/2015 4:01 PM (GMT -5)
Well I’m pretty disappointed to be getting a thoracic xray and physical therapy. No other changes. I’m tired of the same crap.
Posted 7/22/2015 6:20 PM (GMT -5)
Hey countrydad.

There are many Extended Release meds.They usually start you on the lowest dose and move up til you're getting the desired relief.

The ones I've taken that were effective are Opana(oxymorphone),
OxyContin(oxycodone),MSContin(morphine).

Right now I take MSContin 30 mg x 2 and Morphine IR for breakthrough pain.I'm satisfied with the pain relief I'm getting.

Some Doctors have a preference.Others ask what has worked for you in the past.

My PMD doesn't write any pain meds that contain tylenol.

I would definitely think that you'd benefit from an extended release med.

Take care.

Rick
Posted 7/23/2015 12:40 AM (GMT -5)
CD, did you tell the dr how bad you are hurting & the Norco is not giving you much relief? I know men especially do not like to complain even to a dr.

The other side of the coin I have to wonder is if this dr is one of those that is looking at your age & thinking this guy is pretty young & if I start giving him heavy narcotics he will end up with tolerance issues & run out of pain medication that will work for him. Just a thought.

You know depending on what happens with the appt with the neurosurgeon, if this guy is not going to address your pain issues you may be forced to find another dr, Try to hang on there.
Posted 7/23/2015 6:12 AM (GMT -5)
Thanks Susie. Your third paragraph is more or less what I was thinking. I don't know if it was in this thread or another where I was saying he has been an OK but not great doctor. I told him the norco is only helping for 60-90 minutes when I have a bad headache and that I am taking it twice a day. I also told him I was not interested in the physical therapy route but he insisted I give it another try. This is the thing I am most frustrated about because my schedule is very hard to fit something like that in. I am supposed to work 45 hours, plus 60-90 minutes commuting per day and 4 kids at home. I am going to see if I can find a PT place near my office so I don't need to arrive late or leave early.

My pain is still there today, and I forgot to fill my norco bottle I carry with me. I have 3 in my keychain pill holder thankfully. My spirits are much better today.
Posted 7/24/2015 5:21 PM (GMT -5)
Occipital headaches are the worst. They are definitely coming from your neck, they are real, horrible, and most people don't understand. After my accident in college (rear-ended on freeway, stopped at end of traffic truck going 55 plus) the occipital headaches were worse than any other injury. The stress, tension, fatigue to neck, outright uncontrollable pain, the only thing I could do to finish college was make myself throw up to make it through and finish a paper. When you say you have high pressure job - young kids, I feel your pain. Lifting anything over shoulders, sitting at desk hunching over, sleeping wring, all set me off into these horrible 2-3 day nightmares.

Here's what I found, after MUCH searching. Some medical, some lifestyle: 1) medical. I had a pain management specialist who did radio frequency lesioning procedure on occipital nerve-really helped. 2) medical -get on propranolol or a beta blocker to prevent (daily medicine) also lowers blood pressure which helps so much with the agonizing frustration these bring (of course ask a dr if these are ok with your other meds but I suspect they are 3) ice, not heat when you sit at desk too long.5) Frequent breaks. Lots of ice water. Maybe wear neck collar but positioning helps a lot. 6) tiger balm on lumps in neck, you know exactly where they are and it helped me to put on temples. Just don't get on pillow then in eyes. 7) headache journal -should be number 1-what you were doing before headache, what you ate, pain scale, how long it lasted, what helped and didn't. Etc. this will show patterns and help u figure out what to avoid if possible. Some of your meds could be making these worse. I really feel for you. I hope someone can do the outpatient procedure on you if warranted - I had on occipital nerve & sciatic and it's really helped. If they won't do it right away, have them give you a tens unit. I wish you the best. Oh, have you tried cranial sacral therapy? It's a type of sort of massage (google it) that was great along with a great chiropractor to get my disc off of my occipital nerve right at the beginning during the flare up headaches. All my best!!!! Sue
Posted 7/25/2015 7:44 AM (GMT -5)
Thank you so much Sue! I can't believe you apparently joined just to share these thoughts with me! This really is a miserable condition to live with daily. There are very few days that I would consider to be pain free, and most normal people would probably not consider even those days to be pain free. If I am below a 4 I feel pain free. I will definitely look into some of your suggestions I haven't already tried. I use ice as my last chiropractor suggested. It helps sometimes. I have a traction unit at home. I don't have a tens though, so I may look into that. I try to drink lots of water and move around a lot. Lately moving around has been harder because my hips have been bothering me from RA.

Today is a rare opportunity for me to sleep in as my in-laws are here with the kids, but my neck is already starting to hurt. Sleeping is a frequent trigger. I have tried every pillow imaginable. I have a sleep number bed and I've tried soft to firm. This whole ordeal gets very frustrating and depressing to deal with. Right now my pain is 6 or 7 and climbing. And we are having people over today to celebrate my 5 year old's birthday. Pain meds and push on through...
Posted 7/26/2015 1:17 PM (GMT -5)
This headache just keeps getting worse and worse. I haven't had much relief in the last 2 days. I'm getting low on norco and my pharmacy said my insurance won't let them fill it again until August 4. I'm going to call my rheumatologist and see if I can do a taper of pred and not screw with the humira. I can't keep doing this. I hope the neuro can help me.
Posted 7/28/2015 9:31 AM (GMT -5)
Update; I woke up Monday morning and felt fine. I've been so-so the past 2 days, but still needing my meds regularly. Still looking like I'll run out before I can get the norco filled.

Feeling very frustrated by the things I need to deal with at the time. Glad I'm seeing my therapist this week. I hope he has some words of wisdom.
Posted 7/30/2015 6:01 PM (GMT -5)
Wow, overwhelming pain issues. I can't imagine functioning every day and with four kids and a full time job. You are to be commended for keeping up the pace and not coming apart at the seams. It is so hard to deal with life in situations like yours. So glad to see you are trying to stay positive and upbeat. Focusing on the pain will just make it feel worse. I don't know if this is helpful at all but I always feel like more information is always good. I stumbled across a product called a BFST which stands for blood flow stimulation therapy. I have heard a lot of great things about it. It helps promote healing by increasing the circulation in the area that it is placed over. I am not sure how it would work on your neck. It might also help in some of your other areas. This may or may not be helpful information but I just thought I would put it out there for your consideration. I wish you all the best, don't give up.
Posted 7/30/2015 6:26 PM (GMT -5)
It sounds like prolotherapy, which I have tried. Thanks for the thoughts! I have been pretty decent lately. I got a new pillow that certainly seems to be helping!
Posted 8/2/2015 9:57 AM (GMT -5)
I use a Boppy pillow it's for breastfeeding infants. Supports your neck very well while asleep.

As far as the pain management, find a doctor and meds regiment that work . you and your situation.

With the issues you have it sounds like a neurologist would be best. Get an MRI of your cervical done. Review it with him or her. Depending on results surgery may be needed. At the end of the day that's a decision for you and your doctor to make.

You have to remember when it comes to chronic pain, it's very hard to treat. Many doctors act like they know what they're doing and are trying to help but are not qualified and/or do not like to say they don't know what the real problem is. All you can do is make educated guesses and act on them. Unfortunately, many of them consider this a huge money maker and put that before the quality of life of their patients. When you find a doctor who does not you know you have a winner. Best of luck.

Post Edited (Cgunther79) : 8/2/2015 9:28:50 AM (GMT-6)

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