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Posted By : CaliJR - 5/21/2017 1:25 PM
(UPDATE AT LAST POST) Since my last post, I have seen my Orthopedic Surgeon, and two additional Neurologists at UCLA. I had NCS and EMG test to help figure this issue with my left hand after rotator cuff surgery in February. The pain in my wrist, palm, and fingers got worse as the weeks have gone on. I finally met with a Pain Management doctor at UCLA and he said I have the classic signs of Complex Regional Pain Syndrome. I am scheduled to go back to UCLA at the end of the month to have a sympathetic nerve block in my neck to help with the pain and hopefully my affected nerve will not act up again when it wears off. Time will tell. Another journey... -JR

Let me know if you have had this done and any advice. Thanks. -JR

Post Edited (CaliJR) : 6/4/2017 9:44:26 AM (GMT-6)


Posted By : straydog - 5/22/2017 7:15 AM
JR, very sorry to read that another dx has been handed to you. CRPS can be a tough one to treat but there are treatments available. You very much need a PM dr to handle this too. The nerve block is where many start treatment wise & is very common. Trauma & surgeries are the usual culprits for it to happen & lets hope this block will bring relief.

Please keep us posted on how you are doing. Take care.

Posted By : CaliJR - 5/22/2017 8:02 AM
Thanks Straydog... "the hits just keep on coming!" This PM doc at UCLA seems like the doc for me now. -JR
CaliJR
Age 52. PSA 7.1-PSA Free=5% 9/15: PCa G9 (4+5)
Prolaris Score 3.6-High Risk
18 Mnths Casodex & Lupron started Dec 2015
HDR Brachy@UCLA 2/29/16 & 3/1/16 Zometa I.V. 3/8, 9/7 & 4/3
IMRT: 28 Fractions Completed 5/5/2016
Taxotere Chemo Ended 8/7/16

Chronic Pain Forum: Rotator Cuff & SLAP Repair 2-16-2017
GERD Forum: Nissen Fundoplication Surgery 7/2015

Posted By : skeye - 5/22/2017 12:22 PM
I've had 2 stellate ganglion blocks (the nerve block you are talking about). They aren't the most fun things in the world, but they aren't that bad either. They basically use fluoroscopic guidance to stick a needle in the front of your neck, until they reach the area in which the ganglion lives, just on top of C6. They did give me some mild sedation for the procedure, although I don't think they used any local anesthesia, since it is really just one needle stick (hard to remember for sure, though, since this was 9 or 10 yrs ago). I mostly just remember having a really strong urge to swallow because of all the pressure on the front of my neck, but you have to keep really still/fight the urge.

After the block, if it was successful, you will develop something called Horner's syndrome, where your eyelids and lip on the side of the block will droop. This is usually only be temporary, and will go away within a few hours. Although permanent Horner's is a risk of the procedure if the ganglion itself is damaged (think that is quite rare, though).

Since it has been so long, I don't remember how long they told me it would be before I should expect to see some kind of relief from the injection (ie. right away vs. a few days to a week). The blocks weren't very helpful for me. I believe I got maybe some very minor relief from the first one (but it didn't last), and no relief from the second one. My blocks were also being done for CRPS, although I didn't have a diagnosis at the time. It took another 8 or 9 yrs for me to get my diagnosis, although I clearly had CRPS all along. My case is just very atypical (it is in my eye & face and presents slightly differently than classic CRPS because of that) and so it wasn't until I saw a CRPS specialist that I finally got a definitive diagnosis. For me, the only things that have helped have been ketamine & lidocaine infusions and low dose naltrexone, but sympathetic nerve blocks are one of the first line treatments for CRPS, and they do help a great many people.

Best of luck! Hopefully you will be one of the people who finds relief with this treatment! You definitely have time in your favor, as it sounds like it has not been very long since you developed CRPS (I'm guessing only a few months based on your signature), so if it ever is going to respond really favorably to treatment, now is the time.

Skeye

Posted By : CaliJR - 5/22/2017 1:05 PM
Valuable info, thank you Skeye! I will update after the procedure to tell you how it goes. Take care. -JR
CaliJR
Age 52. PSA 7.1-PSA Free=5% 9/15: PCa G9 (4+5)
Prolaris Score 3.6-High Risk
18 Mnths Casodex & Lupron started Dec 2015
HDR Brachy@UCLA 2/29/16 & 3/1/16 Zometa I.V. 3/8, 9/7 & 4/3
IMRT: 28 Fractions Completed 5/5/2016
Taxotere Chemo Ended 8/7/16

Chronic Pain Forum: Rotator Cuff & SLAP Repair 2-16-2017
GERD Forum: Nissen Fundoplication Surgery 7/2015

Posted By : CaliJR - 6/4/2017 9:43 AM
UPDATE: Well I had the stellate ganglion block done at UCLA last Tuesday. I did not experience the warm sensation of the hand, or any droopiness of my eyelid/face after either. I maybe had about a day of less pain, but the swelling in my hand never went away. So here I sit today, pretty much back in the same situation. Hand still swollen, pain in all fingers, palm and wrist. I go back to see the doc on the 21st. I did read that this is the first line of treatment for CRPS, but only about 50% effective. We will see what happens. -JR
CaliJR
Age 52. PSA 7.1-PSA Free=5% 9/15: PCa G9 (4+5)
Prolaris Score 3.6-High Risk
18 Mnths Casodex & Lupron started Dec 2015
HDR Brachy@UCLA 2/29/16 & 3/1/16 Zometa I.V. 3/8, 9/7 & 4/3
IMRT: 28 Fractions Completed 5/5/2016
Taxotere Chemo Ended 8/7/16

Chronic Pain Forum: Rotator Cuff & SLAP Repair 2-16-2017
GERD Forum: Nissen Fundoplication Surgery 7/2015

Posted By : straydog - 6/4/2017 12:16 PM
JR, try not to get discouraged. I will not be surprised if the dr wants to try another block. You do have more treatment options available, it is a matter of finding which one you respond to. I do not know how much research you have done on CRPS, but there are some very good reputable sites available to read up on.

Please keep us posted & hang in there, we are here for you.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 6/4/2017 3:05 PM
JR:
I am sorry to hear that the ganglion block did not produce lasting results.

I had RSD affecting my right knee and lower leg after back-to-back surgeries to repair a torn ACL. My knee said enough is enough, and the RSD spiraled into its own misery. The pain and sensitivity was excruciating.

There are more treatment options for you. There remains hope for successful ratcheting down of the pain and tropic skin changes that you are experiencing . . and enduring.

I will send a flotilla of lucky lady bugs your direction, with the hope that you follow-up appointment is more encouraging. I believe in the power of collective goodwill and prayer. You have a lot of people here who are thinking of you and holding you in their hearts.
- K -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : CaliJR - 6/6/2017 11:08 PM
Thank you Susie and Seashel! I am now officially in remission from my cancer after 18 months of treatments. I was hoping to ride off into the sunset after fixing my shoulder, but I guess that's not the plan... my wife calls me Mr 1%, meaning if there is a 1% chance of a side effect, I will get it. Oh well... onward. -JR
CaliJR
Age 52. PSA 7.1-PSA Free=5% 9/15: PCa G9 (4+5)
18 Mnths Casodex & Lupron started Dec 2015
HDR Brachy@UCLA 2/29/16 & 3/1/16 Zometa I.V. 3/8, 9/7 & 4/3
IMRT: 28 Fractions Completed 5/5/2016
Taxotere Chemo Ended 8/7/16

Treatment Over 5-31-2017
SE: Chronic Radiation Enteritis, Dysuria

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