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Feeling Optimistic


#1

Several have PM’d me about updates lately. I’ve “taken one for the team” a couple of times in the last 2 years including Dr. Parekatill’s mega block with botox in late June.

Since mid-July, I’ve had a noticeable and enjoyable drop in pain. In the last week or two, I e barely noticed any scrotal pain.

I believe it’s mainly the result of the steroid and botox, but also wonder if it’s the 5 consecutive months of Lyrica and/or the two supplements I’m taking that supposedly help reduce nerve pain (Nerve Shield) and inflammation (Zyflamend).

Regardless, I’ve just finished 2-3 of the best weeks I’ve had in 2+ years.

As the old saying goes, Your Mileage May Vary, so please do your research with my experience as one data point.


#2

That’s brilliant news @raising4girls, how long does the block tend to last for? From what I remember you haven’t got congestion and inflammation?


#3

its frustrating that there are so many “anti inflammatory” options out there. Do you take Curcumin? How is Zyvlamend different?


#4

I believe curcumin is an ingredient in zyflamend.


#5

great to hear! glad you are experiencing relief


#6

Not sure. With botox, could be permanent.


#7

@raising4girls is the block and Botox still helping with back pain?


#8

Yes, haven’t had back pain lately, either.


#9

Is there any localised numbness as well?


#10

Not really. I wouldn’t say numbness.


#11

Glad to hear you are feeling relief.
I had the Botox from Dr P and 6 weeks later I got progressively better and have been without pain ever since. In the prior 10 months I had had a reversal, spermatic cord denervation, multiple nerve blocks, and cryo-ablation. I’m not sure which one did it, but everything is worth a try.


#12

Good to hear you’re recovered but, good God, you’ve been through a lot. I had a 10-year respite from procedures post-reversal in 2006. I appreciate Dr. P. trying botox with me before SCD or cryo (although I had RF ablation here at home).

How long has it been for you since you attained pain-free status?


#13

Thought I’d provide an overdue and no longer optimistic update.

I thoroughly enjoyed a mostly pain-free respite for about 5 weeks. I had a spermatic cord block with botox on 6/26, had immediate relief from the anesthetic/analgesic followed by longer-term pain relief once the steroid or botox started kicking in around 7/7-7/10. Felt really good for the 2nd half of July as well as my vacation 8/3-8/13. Thought I was somehow back to normal but the pain relief wore off on 8/16, sad to say.

I have a call with Dr. P. this Tuesday followed by a 9/14 with my uro at the Cleveland Clinic (who offers spermatic cord denervation if preceded by a successful cord block) and a 9/24 appointment with the Dellon Institute.

I’ve taken a bit over two years with conservative therapies, but unless the botox kicks in (Dr. P. last told me to give it 3 months), I think I’m facing living with the pain or attempting surgery.

Any input is appreciated.


#14

What a battle @raising4girls. Have you worked out if it is neuropatic or congestion pain?


#15

@raising4girls sounds like you still need to give the Botox some time while considering next options and listening to the upcoming appointment options. I’m hoping you report back some positive results from Botox. You can always buy some more time with another block or PRF.


#16

Two thoughts on this: One, given the numerous times I’ve favorably responded to nerve blocks, I think neuropathic pain is at least part of my issue if not the whole issue. Two, there’s no real practical way to test for congestive pain. No uro has ever (even back in 2005-06) told me I had an inflamed, engorged epi. Most times they tell me it feels normal. Last uro called it “flacid.”

Right now, my gut instinct is to further investigate nerve surgeries, either SCD or GF neurectomy.

I think a re-do reversal is a possible next step if a nerve surgery fails.

I know some have suggested going straight to orchiectomy, but I think that’s a bit rash for my condition. For one, I’ve never had pain in the testicle itself. It’s always been higher-up cord pain. I’ve heeded others’ advice here so far about SCD, but see it as the likely, logical next step.


#17

Yes, I’m not doing anything new until I’ve given the botox a full 3 months. For all I know, the recent spike in pain could be the nerves fighting the ablative effect of the botox.


#18

Rather than doing SCD, could you try nerve ablation first? Seems way less destructive.


#19

I’ve had the GF ablated via pulsed RF. Also had the pudendal ablated via pulsed RF. I think botox is also considered a form of ablation, as well.

I think I’ve tried every non-surgical procedure available to me. Supposed I could try again, but not sure it’s worth the time, effort, or cost.


#20

Since you had reversal so many years ago, I wonder if your tubes would sealed up if you tried papaya? Although your epi is not full, but I wonder if you are getting referred pains from imflammation?