Personal Question about ED Headling...

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Kark60
Regular Member


Date Joined Jun 2008
Total Posts : 91
   Posted 1/13/2009 4:16 PM (GMT -6)   
I finally got the pump and found that it, with the help of Viagra, produced SUCCESS!!

However, and I hope I don't embarrass or offend anyone, but when erect, I have a distinct pointing to the left as opposed to the "pointer" going straight ahead. I don't remember being like this pre-op, even though that was many months ago!

Has anyone else had this type of experience? Is this part of the healing process (i.e. some "chambers" healing before others)? Might this have to do with my "unilateral" nerve spare (nerves spared on the right side and NOT the left!)? Any insight is appreciated...

Also, I'm due for the three-month PSA tomorrow afternoon. I share the "test anxiety." Please keep me in your thoughts...
Husband and father of two (current ages 5 and 7).
Age when diagnosed: 47 (currently 48)
Biopsy showed cancer only on left side.
Pre-surgery PSA: 13.7
Pre-surgery Gleason: 4+3=7
Pre-surgery Staging: T2
CT Scan, Bone Scan, PET Scan: Clear
Robotic Surgery on May 28, 2008, at Barnes Hospital in St. Louis.
Right nerve bundle spared; left bundle removed.
Catheter for 8 days with infrequent "stress" leaking. Pad-free after five weeks.
Continuing ED: attempted Viagra, Levitra, and Cialis with no response. However, had SUCCESS in October 2008 using MUSE.
POST-SURGERY PATH REPORT:
Bad news-
Gleason: 4+3=7
Involved 10% of prostate; all quadrants involved
Extraprostatic extension at left base and apex
Extensive perineurual invasion present.
Non-neoplastic prostate shows PIN, high grade, diffuse.
T3a
However, good news-
Bladder neck, lymphvasular space, seminal vesicles, 17 examined lymph nodes, and all margins are FREE of tumor.
Four-week post-surgical PSA = 0.1
Seven-week post-surgical PSA = .01
October 2008 PSA = 0.0
Next PSA scheduled for January 2009.


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 1/13/2009 4:27 PM (GMT -6)   
Kark...I haven't had that type of experience...but seems to me that this could be a serious situation (Pyrones disease comes to mind) and needs to be checked by a doctor so that it doesn't become permanent. But others with more experience will chime in as to whether this is a normal condition or not.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA Oct 2008 <.05
      Jan 2009 .06


Kark60
Regular Member


Date Joined Jun 2008
Total Posts : 91
   Posted 1/13/2009 4:35 PM (GMT -6)   
What does the treatment for Pyrones Disease entail?
Husband and father of two (current ages 5 and 7).
Age when diagnosed: 47 (currently 48)
Biopsy showed cancer only on left side.
Pre-surgery PSA: 13.7
Pre-surgery Gleason: 4+3=7
Pre-surgery Staging: T2
CT Scan, Bone Scan, PET Scan: Clear
Robotic Surgery on May 28, 2008, at Barnes Hospital in St. Louis.
Right nerve bundle spared; left bundle removed.
Catheter for 8 days with infrequent "stress" leaking. Pad-free after five weeks.
Continuing ED: attempted Viagra, Levitra, and Cialis with no response. However, had SUCCESS in October 2008 using MUSE.
POST-SURGERY PATH REPORT:
Bad news-
Gleason: 4+3=7
Involved 10% of prostate; all quadrants involved
Extraprostatic extension at left base and apex
Extensive perineurual invasion present.
Non-neoplastic prostate shows PIN, high grade, diffuse.
T3a
However, good news-
Bladder neck, lymphvasular space, seminal vesicles, 17 examined lymph nodes, and all margins are FREE of tumor.
Four-week post-surgical PSA = 0.1
Seven-week post-surgical PSA = .01
October 2008 PSA = 0.0
Next PSA scheduled for January 2009.


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 1/13/2009 4:37 PM (GMT -6)   
Gosh Kark...I have no idea...see if you can search google for some ideas until some of the members here can tell from first hand experience dealing with this type of disease.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA Oct 2008 <.05
      Jan 2009 .06


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/13/2009 4:44 PM (GMT -6)   
Kark,

400mg of vitamin E a day...nothing more since yours "may" be Kalami's and not actually Peyronie's. Kalami's is a condition otherwise known as, urethral manipulation sydromea nd yes, it is more common that Doc's are will ing to admit. It may wind up fixing itself as ED improves. The cause is different and it acts differently in most cases than would Peyronie's. Pump excersise is good for it but, don't over fill the tissues. Normal is good...the good year blimp is bad....simple to remember. You're already doing the right thing!

PS: Paul has had this same problem (which isn't a problem at all really) since about a year post-op. Hasn't gotten worse not better. Stays the same.

swim
 


Kark60
Regular Member


Date Joined Jun 2008
Total Posts : 91
   Posted 1/13/2009 4:48 PM (GMT -6)   
Thanks for the replies. Here is a link to information from Web MD

http://www.webmd.com/erectile-dysfunction/tc/peyronies-disease-topic-overview
Husband and father of two (current ages 5 and 7).
Age when diagnosed: 47 (currently 48)
Biopsy showed cancer only on left side.
Pre-surgery PSA: 13.7
Pre-surgery Gleason: 4+3=7
Pre-surgery Staging: T2
CT Scan, Bone Scan, PET Scan: Clear
Robotic Surgery on May 28, 2008, at Barnes Hospital in St. Louis.
Right nerve bundle spared; left bundle removed.
Catheter for 8 days with infrequent "stress" leaking. Pad-free after five weeks.
Continuing ED: attempted Viagra, Levitra, and Cialis with no response. However, had SUCCESS in October 2008 using MUSE.
POST-SURGERY PATH REPORT:
Bad news-
Gleason: 4+3=7
Involved 10% of prostate; all quadrants involved
Extraprostatic extension at left base and apex
Extensive perineurual invasion present.
Non-neoplastic prostate shows PIN, high grade, diffuse.
T3a
However, good news-
Bladder neck, lymphvasular space, seminal vesicles, 17 examined lymph nodes, and all margins are FREE of tumor.
Four-week post-surgical PSA = 0.1
Seven-week post-surgical PSA = .01
October 2008 PSA = 0.0
Next PSA scheduled for January 2009.


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 1/13/2009 4:57 PM (GMT -6)   
Kark,
I have the same situation. One Uro told me it was from the Bimix injections, another said it was from the surgery. I didn't have it prior to RP. It hasn't become any worse over time. The Dr. couldn't feel and hard tissue anywhere so I'm thinking it may be kalami's. Check it out with your Uro for sure.
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 1/13/2009 8:09 PM (GMT -6)   
My curve has stayed the same since surgery. Everything seems to be staying the same for me. I would still ask your doctor about it.
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


Kirk_B
Regular Member


Date Joined Dec 2005
Total Posts : 31
   Posted 1/14/2009 5:33 PM (GMT -6)   
I have a left pointer myself, 3 years post op.
It hasn't gotten better or worse so I hadn't given it much thought until I saw this post.
I too use Bi-mix, but I doubt it had anything to do with it although I have wondered about it.
As long as the thing kind of works I guess I am content!!

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 1/14/2009 8:00 PM (GMT -6)   
Hello Kark,
From what I've read in the info on my pump, there may be some curvature either to the left or right. I've got to believe that it has something to do with nerve sparing during surgery. I am going to lose some of the left side on Monday and was told to practice with this device now and then compare the results with post op usage. Along with ED meds, this is supposed to enhance the healing process. Maybe over time it does and only time will tell. I have also read that sometimes the nerves will regenerate with exercise. Here's to hoping that this is the case.
Bob
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci scheduled for Jan. 19, 2009.Dr. Scott Montgomery, KC Urology,
Shawnee Mission Med. Center. Kansas

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