QuestionQUESTION: PRIORITY:HIGH
Dear DR Borucki:
I had an EPIDIDYMECTOMY in 2002 that was the result of a bicycling accident I believe. My seat post broke and I landed on my rear wheel while I was riding. Thankfully the bike had a fender that broke some of the impact.
The pain started in 2000 RIGHT AFTER THE BICYCLING ACCIDENT and I tried to manage it with pain meds and athletic supporter. With very limited relief...After repeated visits to my PCP of 19 years.
My PCP suggested a certain Urologist/surgeon of which I went to. And I was told of my options. Options were to remove the testicle or the epididymus. And I chose the least invasive based upon our discussion's.
I had a nerve block done rather than risking being knocked out. Which apparently wasn't done properly because minutes into the surgery the surgeon touched/cut something that sent me a foot off the operating table. Which also resulted in a spinal headache requiring a spinal patch. I was in complete misery for a week before the patch was done.
Here I am in 2010 with chronic pain in that testicle or groin area that the surgery side was done on...
I went to another Urologist to get a second opinion and was told they would of not done the epididymectomy unless I had more some form of a more serious condition?!? Not sure what she meant by that exactly. But they very "rarely" do epididymectomies.
The suggestions of a temporary nerve block and additional medications were the options.
Again, I was told that although the temporary nerve block could bring the needed relief. In order to maintain that a permanent block would need to be done. With the irreversible risk of numbness and tingling in the groin/testicle. Which I decided was too much to risk as there is no recourse.
The main thing that has brought relief thus far when this really flares up and affects my whole life is Acupuncture. Which is quite costly and insurance will not cover it. And it seem's to just be another "band-aid" approach to relieving the pain for good. Warm baths and cold water swimming often can bring some temporary relief.
I wanted to get your input/feedback and other possible options in treating this chronic condition.
I'd even consider another surgery or the permanent nerve block if I was assured that these would help and not make things worst than they are already.
The "theory" seem's to be that there is or was nerve/tissue damages done. And possibly a small part of the epididymus was not completely removed?!? causing this condition to wax and wane somewhat with periods of more acute pain. That like I said make life very uncomfortable...
Are there places that "specialize" in these types of issues and are more experienced and able to perform these procedures if elected?
Any further help or suggestions regarding any area of this condition would be deeply appreciated. It seems to me that there are no other options locally that could be done with a greater level confidence of successful treatment. Ending the pain once and for all or "greatly" minimizing it.
Sincerely. Ralph
ANSWER: All of my response is more of your "theory"... an educated theory, but a theory nonetheless.
Doctors speak sometimes before thinking.... "I would never have done...." is an easy thing to say in retrospect... That sounds like it was an appropriate trial at the time, but didn't work.
You had crush injury to various pelvic nerve ends during the accident. A permanent fix would be to ablate (destroy) the nerve ends that are causing pain. This would leave you with patches of numbness in your crotch, but, they will spare the sensory and blood vessel nerves to the penis, leaving you with intact sexual function. If they can't, then that would be a deal killer from my point of view. (Unless you are 85 years old)
Acupuncture.... you could get together with your primary doctor and the acupuncturist and lobby the insurance company to cover this form of therapy for this problem. It MAY work.
Overall, I would try a temp nerve block to see how effective it is.... if it works...... then
---------- FOLLOW-UP ----------
QUESTION: Thanks...I don't recall any mention of impaired sexual
function. Other than with the initial surgery there could
have been a risk of sterility. Which I was not concerned
about...
Here is the exact notes from the last evaluation.
~I discussed with him (ralph) genital organ pain. We
discussed conservative measures for organ pain including
medical therapy like amitripytyline or neurontin.
I discussed that in my experience epididymecotomy or
orchiectomyrarely ever relieves pain since this is generally
neuropathic pain and not in the epididymus or testicle.
I explained that he could have a cord block done as a
diagnostic test and that if he gets relief from this he
could be seen in the pain clinic for a permanent block with
phenol. The downside to a phenol block is that permanent
paresthesia (numbness) can result.
If he is interested in a nerve block I am happy to block his
cord at a later date and then refer him to the pain clinic.
He is concerned about the effect of bicycling and I
suggested that if his genital organ pain is exacerbated with
cycling that it is usually due to a poorly fitted bike and
that the seat is not the only issue. I recommended that he
have a fit kit done by an experienced fitter. I also
explained that I am biased as I have a financial interest in
the bike business.
Although his MSK may play into some of his pain and voiding
symptoms I suspect that with proper hydration this could be
prevented and that he needs better management of his genital
organ pain. Greater than 50% of this 45min appt was spent in
counseling and discussion.
He has not been pain free.
Under Physical Exam:*Healthy appearance
Color normal. No significant skin lesions.
*Abdomen benign w/o masses, rebound, guarding, or
tenderness. No hepatosplenomegaly. No CVA tenderness.
*Gential: Scrotum - Color and texture normal; no masses. Rt
testis and epididymus w/o tenderness or masses. Tender Lt
testicle with an absent Lt epididymus. Penis - circumcised
with orthotopicmeatus; no masses or surface lesion.
U/A: neg
Impression: gential organ pain - Lt testicle, despite
previous Ltepididmectomy.
He has no difficulty voiding. He has no dysuria usually.
He has MSK and at times has gross and microscopic hematuria.
He has never caught a stone. At times there have been
concerns that he has passed micro stones/crystals.
That was more or less what as said by the second Urologist.
Based on this what is the risk in having a temporary nerve
block be successful and then proceeding with a permanent
block resulting in permanent paresthesia (numbness)???
Is there much risk in having a temporary block in your
experience?
Finally, other than the options mentioned I will ask you
once again is there a place that "specialize" in this field
of genital pain and the appropriate treatments?
*PLEASE read and consider and answer this as carefully as
possible so that there won't be little if any doubts about
what would be a good way or place to go to bring closure to
this painful life robbing condition of the last 8 years...
Sincerely, Ralph
AnswerI am not a urologist, so don't treat this with nerve blocks.
There is little risk to trying the temp block. And if it helps, and they can block the local area of pain, you should have an excellent result.
To find a subspecialist in urology that specifically works with pain, you probably will have to go to a teaching institution. Johns Hopkins Medical School has an excellent, world renowned program. I am sure there are other good programs in various medical schools in your state.
