Shingles Anybody???

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc
HerMajesty
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Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Shingles Anybody???

Post by HerMajesty »

Karyn wrote: When I described this to Dr. Conway, he was of the opinion that it may have been a shingle. Is it possible to get ONE shingle?
I hope this clears up quickly for you. Where on your body do you have them, or "it"? :?
Hi Karyn, All you CAN really get is "one shingle", they just call it "shingles" for some reason. But the rash follows the pathway of exacly one nerve. That's also why it stays on one side and does not cross over. It's from the varicella herpes zoster virus which causes chicken pox, and when you thought your chicken pox was over it never really was...it just went into hiding in your nerves. Chicken pox is actually from the herpes family of viruses and as they say, "herpes is forever". When your immune system has a hiccup, the varicella will break out of one nerve and cause the equivalent of a herpes outbreak along the pathway of the nerve. It can be spread to other nerves by contact: the big warning my Doc gave me is that if I touch my rash and then rub my eye, it can start a second infection in the branch of the trigeminal nerve that includes the eye, and can cause vision damage.
I have the rash on my side right above my hip, and I have a sore area for a few inches around it which probably defines the border to which it would have spread without treatment. It's about the size of a bite mark...I enjoy scary movies and have been watching too much demonic possession stuff on Netflix because my 1st thought when I woke up in the morning and felt something on my side which wasn't there the night before was, A demon bit me!" :lol: :lol: When I got a look in the mirror, the pattern was very random though, a bunch of welts some round and some long like scratches. I think of shingles as being blisters but I guess they don't blister til later, they just looked like welts. I'm taking the time to describe it just so you know, if you get something like that go to the Doc for antivirals immediately (must start within the 1st 24-48 hours to prevent the possibility of post-herpetic pain syndrome), and don't touch it and then rub your eye! I am stressing because I woke up all groggy and was feeling around it asking my husband what was on my side, so I really don't know if I rubbed my eye or not.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Shingles Anybody???

Post by Karyn »

HerMajesty wrote:the big warning my Doc gave me is that if I touch my rash and then rub my eye, it can start a second infection in the branch of the trigeminal nerve that includes the eye, and can cause vision damage.
:shock: OMG!!!! :shock:
Thank you very much for the info. But, I never had any type of rash and it was only that one spot. Before I thought it was a blood blister, I thought it might be an ingrown hair and actually squeezed it, trying to release the pressure. At the risk of sounding like a freak, I touched it quite frequently; tried dabbing rubbing alcohol on it, etc ... It didn't spread and it definintely wasn't itchy. It went away on it's own about 4 weeks after the hysterectomy. I dunno .....
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Shingles Anybody???

Post by HerMajesty »

I never had any type of rash and it was only that one spot. Before I thought it was a blood blister, I thought it might be an ingrown hair and actually squeezed it, trying to release the pressure. At the risk of sounding like a freak, I touched it quite frequently; tried dabbing rubbing alcohol on it, etc ... It didn't spread and it definintely wasn't itchy. It went away on it's own about 4 weeks after the hysterectomy. I dunno .....
My guess would be it was a varicose vein due to the pressure of the giant uterus...I have heard pregnant women can get those in their labia. So now i have made a guess and Dr. Conway has made a guess...who cares, it's gone :D
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Shingles Anybody???

Post by Karyn »

HerMajesty wrote:My guess would be it was a varicose vein due to the pressure of the giant uterus...I have heard pregnant women can get those in their labia. So now i have made a guess and Dr. Conway has made a guess...who cares, it's gone
You're right. It's gone and never came back. It's always bothered me though, as to what "it" was.
Your guess makes much more sense and feels right to me. I hope the shingles retreat soon! Do you know how long they last?
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Shingles Anybody???

Post by HerMajesty »

Your guess makes much more sense and feels right to me.


Ha! In your face Conway !!! LOL just kidding. Really.
I hope the shingles retreat soon! Do you know how long they last?
Super duper variable. the rash can be gone in a week or repeated bouts of shingles and nerve pain in the same spot can plague people for years. My Grandma had it for 3 years, but she is quite elderly and diabetic so I think that was due to a general breakdown in immunity. I am almost never sick so I think this was a fluke and it will be gone soon.
I posted because I was wondering if shingles was a common part of some kind of "neuropathy syndrome", or if neuro meds are a risk factor or something, but no one else who responded seems to have had this issue so I guess the answer is nope, just me.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
TracyB7777
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: Shingles Anybody???

Post by TracyB7777 »

Yikes HM!! Alas, I too have had chicken pox TWICE! One mild case as a baby and then a full blown case in 8th grade. Two weeks after that I got a horrible case of Shingles! Luckily, knock on wood, I haven't had it since. However, Dr. Castellanos and Hibner won't try nerve blocks for fear of inflaming it again and I had it like a MILLION years ago. I do hope you get crusty soon!! :lol:

Tracy
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Shingles Anybody???

Post by HerMajesty »

TracyB7777 wrote: Dr. Castellanos and Hibner won't try nerve blocks for fear of inflaming it again and I had it like a MILLION years ago. Tracy
That's 1st of all, it's totally mind boggling that they take a thorough enough history to KNOW that you had 2 cases of chicken pox and some shingles when you were a kid...I doubt any of my Doctors know I had chicken pox twice. Glad I didn't tell because I got 2 nerve blocks...this was over a year ago, so no association with the shingles. The nerve blocks were not helpful ( a little temporary relief from the first one, then nuthin'), but nothing bad happened to me either. I think they are being over cautious to the point where to be quite honest, if it were me and I really wanted to try nerve blocks, I would probably just go to a third Doctor and fail to mention the ancient history with varicella.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Shingles Anybody???

Post by Lernica »

HerMajesty wrote: to be quite honest, if it were me and I really wanted to try nerve blocks, I would probably just go to a third Doctor and fail to mention the ancient history with varicella.
Oh, HerMajesty, you're such a rebel! :lol: But that's why we love ya!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Shingles Anybody???

Post by HerMajesty »

Lernica wrote:
HerMajesty wrote: to be quite honest, if it were me and I really wanted to try nerve blocks, I would probably just go to a third Doctor and fail to mention the ancient history with varicella.
Oh, HerMajesty, you're such a rebel! :lol: But that's why we love ya!
I just have something against Doctors. Very little respect for the profession. It's really the fault of the Urologist I had to see as a kid. It took him almost 2 years to figure out I had interstitial cystitis (his excuse when he finally did a diagnostic cysto / hydro: "That's a disease for old women"), and meantime every time he saw me he would ram a catheter up me, tell me it "shouldn't hurt", and quiz me as to: "Are you sure you're not having any sex?" (I was 14). By the time I was 16 or 17 I had a mindset about Doctors that has lasted a lifetime. When it comes to my health, they can do the work, but I call the shots. If they don't like it they are not the only Doctor on the planet, bye bye ;)
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Shingles Anybody???

Post by Lernica »

Yikes! :shock: You poor thing! Given your childhood experience with the uro your aversion to doctors is perfectly understandable. My approach is to merely seek their assistance in treating me but to manage my treatment myself. That's the only way to get better IMHO. Leaving your treatment to doctors (or any healthcare provider for that matter) is a recipe for disaster.

That reminds me of a recent scene I came across in a pharmacy hospital. An elderly, elegant and well-dressed woman, sitting in a wheelchair pushed by her adult son and daughter, was waiting for her prescription at the pharmacy counter. When her name was called, her young Philipina personal caregiver (who was also among her retinue) approached the counter to speak to the pharmacist. When the pharmacist asked to speak to the customer, the caregiver said "Oh it's okay, I manage her medications". The pharmacist then proceeded to explain to the caregiver the proper dosage of the medication, the side effects, etc. etc. I looked on horrified as the patient's children continued to gab with the patient off to the side, the three of them completely uninterested in the conversation with the pharmacist. As I was leaving, I said to the son "You know, your mother really should be listening to the pharmacists' instructions" and the brother looked at me as if I were from Mars. "Oh that's okay," he said,"her caregiver looks after her medications". I could only shake my head at the ignorance of the whole lot of them. This is an extreme example of a patient delegating her healthcare to others, to the likely detriment of her own health.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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