NeuroTalk Support Groups - Emory PM clinic: disappointing

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Emory PM clinic: disappointing

Today was my long awaited appointment at Emory's PM Clinic. Highly recommended by top TOS Dr.s and my Denver PM guy. I spent a whole day filling out their forms, histories and wrote (painfully) descriptions of my pain and triggers. Gave them full operative reports and all med records. They are listed in the top 35 PM clinics in the US.

:ranting: However... :mad:

They do not do any IV medications. No medications at all. Just perscription recommendations that they provide to your GP. They will do nerve blocks... but only on Tuesdays. :mad::mad:

After a thorough review of my records (5min w/intern, 10 min w/Dr) she believes my arm and nerve pain are coming from C4-C6; that I have scarring at the C8 nerve root; and she can numb the neck bones to see if it relieves my arm pain. if so, then she can 'burn' the nerves, which could provide relief for up to a year. Lessee... burn, scar, regrow, burn, scar, regrow... for another 20+ years? Nothanx. Not yet anyway.

I asked about the thoracic area nerve entrapment/damage and asked if she could do blocks for this. She pulled out a book that showed the C4-C6 and what pain radiated from them. As if the brachial plexus couldn't possibly cause hand, arm or shoulder pain. Oh heck, I just had RIBS REMOVED THERE AT C7 and T1 :mad::mad::mad: but what the hell do I know??? When her intern pressed on my rt clavicle I almost came off of the table, but heck, maybe that was really my neck. :mad:

Sure, I agree my neck is shot. I also agree that nerve oblation may help some of that pain. But what about the rest of it? The sternum, the chest, the b.p. scarring. If she want's to ignore that, can I trust her with the crevical issues? She's got credentials out the wazoo.

For privacy and slander reasons, I'm not printing the full name of this Dr.

P.B., MD
Clinical Director of Acute Pain Service, Emory Center for Pain Management
Assistant Professor of Anesthesiology

Dr. B. is board certified in anesthesiology and pain medicine. She is a distinguished member of many professional organizations, including The American Society of Anesthesiologists and the American Pain Society. Dr. B. graduated from Emory University Medical School, where she also conducted her internship and residency. In 2001, she was voted Atlanta's Top Doctor for Pain Management by Atlanta Magazine.

She wrote a recommendation for my GP:

Impression: cervical spondylosis, upper causalga (CRPS), severe depression.

Recommends:
1. anti neuropathic pain meds (topomax, keppra)
2. voltran gel
3. phys therapy
4. anti-depressants
5. consider cervical medial branch blocks for head and neck pain
6. consider spinal cord stimulation for arm pain

I feel like I have waited 3 years for nothing. :Bang-Head:

That's it. This is the best Atlanta has to offer? There's no such place that I can go when I'm in a 10+ flareup besides the ER (who won't be able to deal with it correctly)? It's a money issue?? She did say that she could refer me on, but they would want $$ over and above Medicare and private insurance (which I can't afford). :confused: Do I continue looking for such a place and just hope that they have someone knowledgeable about TOS?

OK, I'm making myself very upset now.
:Sob:

3. Physical Therapy

that was a giant red flag.

How disappointing...

this part-
[numb the neck bones to see if it relieves my arm pain]
has something like that been tried /tested recently or post surgery? Just to check...

I'd be nice to know what percent of pain is possibly coming from the c spine vs the rest.

But maybe you can already tell from living with it...:(

I wonder if she is mostly ortho based and not much knowledge of fascia /soft tissue problems.

hmm- she didn't clarify on the PT as to for pain relief or strengthening??
gosh my former primary dr at least clarified on that point.....pain relief first priority

Quote:

nice to know what percent of pain is possibly coming from the c spine vs the rest.

Hi Jo, that's exactly what I asked her. That's when she pulled out the c-spine book and showed me the diagram. 5th digits, arms neck shoulders shoulderblades are affected by C4-C6. The book did not show a frontal map: no chest walls, no sternum. And when I asked about C7, she refered back to C6. :confused: as tho C7 was irrelevent. She touched my shoulders and said "yep, like steel bands" and hit the spots under my shoulder blades and when I said OUCH she said "Yep. cervical." as if 100% of my problem was cervical.

She didn't give me time or opportunity to discuss arm pits, pecs, rib cage... nor did she say that killing the neck pain would return my arm strength.

Quote:

numb the neck bones to see if it relieves my arm pain
has something like that been tried /tested recently or post surgery? Just to check...

No, I've been in limbo for 3 years now waiting for someone who could DO this kind of diagnostic testing under my Medicare here in ATL. and also has the experience. I'm not letting just anyone stick a needle in my neck to numb stuff.

here are her Specialties:

Anesthesiology (Board certified since 1993)
Pain Medicine (Board certified since 1994)

Area of Clinical Research:

Botox (botulinum toxin)
Intradiskal Electrothermal Therapy (IDET)
Radiofrequency Ablation
back pain
disc degeneration
dorsal column stimulator
epidural lysis of adhesions
epidural steroid injection
facet block
herniated disc
lumbar disorders
neck pain
nerve root block
neuropathic pain
pars block
rhizotomy
sacroiliac (SI) joint dysfunction
sacroiliac degeneration
sciatica
spinal cord stimulator
spinal implants
spinal pain
spinal stenosis
spondylolisthesis
spondylosis
trigeminal neuralgia
trigger point injection

Notice how the word Thoracic isn't anywhere in her specialties? I'm thinking this is why she "steered" me to a strictly cervical diagnosis. I really felt as tho she ignored or disregarded about half of what I said. Fine and dandy if she specializes and can only treat the cervical, but couldn't she just say "it's definately not related to the surgeries" or "it could be both but I don't do Thoracic" or "I'm not familiar with..."

It was like she had selective deafness. :Deliberate:

Or maybe she's correct and my surgeries were 100% successful and it's just coincidence that my neck is suddenly shot? and giving the same symptoms??

I don't mean to sound ungrateful or like a big baby, but I really was expecting a facility that had broader services and experience.

I hear you .. I had similar selective hearing/comprehending problems with the few drs I encountered.:(:(
It's like they had no clue of the whole picture....
I can imagine how frustrating it must be to have to depend on and even pin hopes on these appts to find out it's a blah dr...:grouphug:

Have you had a scalene muscle block recently for diagnostic purposes? Did you have a scalenectomy?

richard

hi richard,

I had a scalenectomy, but it was an abborant 'extra' scalene. No, no diagnostic tests since the pec minor release in 2005.

I asked about blocks, but didn't indicate scalene. she only seemed interested in blocks to the c-spine nerve roots. she had a lovely spine model she showed me. only pointing to c-spine.

I think this test is warranted. More and more tos experts are of the belief that the entrapment in the scalene muscles is paramount. Some do a scalenectomy without a rib resection with good results.

Hi Anne,
I feel bad that you had such a rough time, but if you look at the totality of it, it is about maintance and not cures at this stage. One thing you don't mention is if she talked about a medication pump. One that can help make life bearable. It sounds like she is anti long term meds and more about, doing procedures that make bucks.

The numb the arm thing, If it is the block that puts the entire arm asleep for 24 hours, that was the only day of relief in her life De had. They did not offer or do nerve ablation at that anesthiast, top in his line. He did not perscribe medications nor do the implants. There is another facility the doc's do that.

I do tune ups, ESi, but been a long time and trigger points. Meds on board and a hot tub.

But there are options, altough she would not use the T word, that is what she was thinking. The brachial bundle is the C4/5/6/7/8 and T1. They come off the spine across the clavical were you went off the table and into the arm to the finger tips. Treating the nerve if there is on, like the lower one sounds it is giving you trouble by burning could give you relief, I would wonder, if it grows back, do the connections grow back togather for the same nerve path?

Not sure what I am trying to say....But if you have a stretch injury and they loosen the outlet up so not so much compression is going to pich the nerve a the rib they removed, the nerve is still a stretched sick nerve and no way to reheal into healthy nerve. But, if numbs, then worth the ablation...do they burn off the nerve at the spine before the outlet area? or after the outlet area.
That is below the collor bone and above the first rib that I guess is gone. If they ablate above the collar bone I can see the better outcome?

The pain to sternum...Dr Togut can explain it better then me. I don;t have his email but his phone no. is 570-825-2400 if you talk to Emily and ask her if you can get his email, tell her that I said Dr T explains the pressure on the chest wall in breathing and the symptoms of the breast bone and radiating pain. he can decide if it is that or if it is the costoclavicular nerves perhaps being pulled in adhesions, scar matter,under the armpit.

give some time to absorb what she recommends and speak or email Dr Togut,
Don;t forget to some of the pain still could be from the car accident.

As for 10+ ER trips, you print the page that shows pain chart with the body on it. Make marks where the pain is flaring and radiating to. What meds have helped and those that do not. How much time in ER you generally spend to relieve, migraine cervogenic flare, arm pain flare, chest pain flare.

Been there don that flares for the two kids. Each time the doctors listened to my plan. For De it was Toradol (butt), for anti inflamatory, not an opiate Kick butt. for spasms making the flare valium Iv, and what ever pain med that helps, generally demerol for some, morpine for others. For cervogenic the phenergan, at least two does, if the first dose does not lower.

If the flare is coming on, ask this doc to perscribe, toradol mouth, try the first one, lay down, Ice or heat, or even TENS in a dark quiet room. Toradol needs to be in a sedintary state to work the best. I use valium one a day for spasms. But mostly when activity is up so when I flare I can take a second one if needed. Pain I use oxycodone 5/325.

I do have Topomax, but since I had an ESI at the himp area of c/5 I have not had a major flare. I will also admit, I have Lexapro for anxiety after De passing and I have not had a flare in over a year now. Not a migraine, head pain I take the Torodol, valium, and oxycodone and lay down with ice on the back of my skull before it flares.

My son I have had the ER for four flares, and two episodes of non stop hiccups after his ESI's. He can;t handle the steroid part and makes the adrenal gland shut down side effects if too close together. I never get the round of three, I just take the one well aimed and have excellant results.

so a plan is to ask the doctor about a home maintance plan, toradol, low dose valium, your pain meds. Then one for a flare up; if it is the day time, can she recommend to your family doc to give injection of Toradol, or will she give one. Then the ER trip, what can you suggest to ER staff that normally do not treat nerve injury flare ups. You are only trying to accomplish a plan for what you can do to reduce your pain levels and control them working together with someone knowledgable is better then flayling in the water with those sore arms.

The Pt, I would only do posture improvment, and gentle range of motion. In fact the only thing I felt helped was aqua therapy in the heated pool, that is why I got the hot tub. Also, a top notch therapist that did a good rub out and nerve glides, with not a no pain no gain attitude.

Do call Emily though, I thonk you are on the way for a maintance plan and control your way through the rocky road of days.
Hugs :hug:
di

Hi Di, thanks for Emily's contact info! a talk with Dr T would be cool! I think about you and De often. "pioneers" :)

Quote:

pressure on the chest wall in breathing and the symptoms of the breast bone and radiating pain. he can decide if it is that or if it is the costoclavicular nerves perhaps being pulled in adhesions, scar matter,under the armpit.

I have already had a phone consult with Dr. A regarding what I'm feeling. We both know we aren't shooting for 'recovery', just maintenance. The way he explained it was: I have a car parked out in the woods, and a tree fell on the car about 38 years ago. Dr. A took the tree off the car, but the car may not 'run' again. He seems to think nerve entrapment/injury and recommended neuro modulation, dantrium and an NSAID like arthrotec. I figured this coupled with blocks as needed and continued stretching/heat/ice I could manage it.

I may seem stubborn about refusing a SCM implant or nerve oblation... but I'm trying all conservative means first. A medication pump would be neat, if it wasn't a permanent implant. But topicals and patches would be tried first I think.

Our hope was to find someone locally who can do this. The c-spine isues were a surprise to me, just found that out 2 weeks ago. I'm waiting for a letter from Dr. A explaining the thoracic issues, so I can give to ER, PM, etc. I was told if i couldn't find someone locally, I could go back to Denver for blocks (Western Pain Mgmt).

thanks for helping me think this out!
:grouphug: