Medical Records

[BruiserB]

Does anyone have any recommendations for obtaining old records? I called hospital I was born in and had Bilateral Inguinal Hernia surgery in 1960 and they said they are not required to keep old records and have none. They only go back 19 years. Have I already reached the end of this journey? Any advice would be helpful. Thanks.

Also, can anyone forward me info regarding these Bilateral Hernias? Seems from much of what I've found they are a rarity. Would be interested in what implications there are.

Bruce

[Dana Gold]

Hi Bruce,

Patient records are kept for a few years under local files, then reposited in the Archives Section of the medical center. Med records are sometimes destroyed after a certain amount of time (mine after 25 years)....to prevent "buildup"....i.e. they only have so much room. My suggestion is to ask about archives or other sources where past history may be found out: i.e. later patient files during your adolescent and/or teenage years. Follow-ups may have been done; or noted in 'Patient History'. And maybe these are in different med ctr, clinic, or Drs office.

Medical links are below; which go into depth inre double hernias in infants.

As far as your surgery: They may have started out to do an 'exploratory laparotomy:


http://www.nlm.nih.gov/medlineplus/ency/article/002928.htm

http://www.emedicine.com/ped/topic2559.htm

http://www.surgical-tutor.org.uk/default-home.htm?system/hnep/paediatric_hernias.htm~right


This may have been done for investigation of scrotal or intra-abdominal masses. After "opening up", the hernias may have been confirmed. Remember that no MRI or ultrasound existed in those years and most "normal" soft tissue would not have shown itself adequately on plain film X-rays (except for infections/pus or tumors, which are denser). Anyway, this is just my guess; and NOT to be taken for the truth. These may or may not confuse you further or may raise more questions than answers. My experience has been that each new "discovery" opened up more "mysteries".

It would be prudent for you to see a doctor and see if some lab tests could be done. Refer the Dr to your breast development : Total and free testosterone; prolactin; FSH and LH.
Sometimes links to the past are found through the present.

Finally: welcome to BLO and Take care.

Dana Gold

[Betsy]

Bruce, try this thread:

http://www.bodieslikeours.org/forums/showthread.php?s=&threadid=662

Betsy

[BruiserB]

Dana,

Thanks for your kind reply. You presented many good ideas for me to investigate. I do wish I could find out more details about the surgery, because they cut me up pretty good. I've asked my mom some pertinent questions and her reply is "I don't think those things apply to you...". I'm speaking, of course, of genital abnomalities that may have been "corrected" for "my" sake.

Could be there is nothing unusual going on here. Seems mom would not have anything to gain by hiding anything from me.

Betsy,

Thanks for the link to the discussion. If something else comes to mind that has come up in the forums, please present.

------

All,

I would also be interested in any information about how a corrected hypospatias would manifest itself if it was done at infancy.

Thanks, again.

Bruce

[Peter]

Hi Bruce,

I can understand your frustration with not getting the answers you want about your medical history. However, sometimes answers come from unexpected places. This evening, I was reading over some old "Bodies" posts, and found a post that accurately matches my own situation.

On 7-15-02, Jamie posted:

"See, under the penis, there is a scar running its complete length. In addition, behind the scrotum, there is another scar that lines up perfectly with the scar on the penis."

Jamie's description of the position and orientation of the scar behind the scrotum matches my own scars almost perfectly. In my case, there is a several inch scar behind the penis, where a vaginal opening would normally be. Reading Jamie's post was something of a revelation, and I now know that there are other people in this world with scars like mine.

Hopefully, if you post a description of your scars with enough information, it will match another intersex person's experience and you will be able to share experiences. Good luck.

Peter

[miriam]

"See, under the penis, there is a scar running its complete length. In addition, behind the scrotum, there is another scar that lines up perfectly with the scar on the penis."


Hello Peter,

Are you sure the ‘scar’ wasn’t made by nature? As described here it seems to be the result of the fusion of the labioscrotal folds. Labioscrotal folds are the lateral fold's at either side of the embryonic cloacal membrane that develop into either the scrotum OR the labia majora.

This kind of 'scar' is a couple of mm in width and the same color or a bit darker than the normal skin. A real scar is a very thin white line.

Groeten, Miriam

[Peter]

Hi Miriam,

My scars are real. When, I tried dating when I was in my early twenties, a nurse that I went out with commented that I had genital scars and big breasts for a man. She said that she had never seen genital scars like mine on any other man she had ever been with. Word got around from her at the medical clinic where I worked, and I was told by another woman, who was almost a total stranger, that I should warn women of my condition before I go out with them. My scars are crude because the stiching is not very advanced.

A few months ago, I showed my scars to my doctor at the local hospital. He examined the scars and agreed that they were real. He told me that I should not worry about it in a paternalistic sort of way.

My mother once told me that I had a vaginal cleft, but lacked internal female organs. I know that the term vaginal cleft is not very accurate, although I have seen it used in the medical literature. I believe that were there is smoke there is fire. It's really frustrating for there to have been so much shame and secrecy in my life.

p.s. My scars do not look like either the dark streak or white line mentioned above. Just for the record, my scars are a raised stiched welt line running back from the scrotum which is obvious to the touch.


Peter

[Sofie]

Hi Bruce,

You can find some hypospadias-pictures and links on http://www.hypospadias.org/ and http://www.the-penis.com/ .
There's also a yahoo-group for people with hypospadias and epispadias on http://groups.yahoo.com/group/hypospadiasepispadiasassnforum/ (open membership, you don't have to write a bio).


Peter My scars do not look like either the dark streak or white line mentioned above. Just for the record, my scars are a raised stiched welt line running back from the scrotum which are obvious to the touch.

Hi Peter,

I also had a raised welt line about 1 inch long on the lower half of my scrotal sac. It was quite thick but the colour was normal.
A well-healed scarline usually is white but sometimes (if not so well-healed) it can also be different shades of red, purple or brownish or the skin simply looks different.

[Betsy]

Sofie has made a great point, Bruce. There are lots of hypospadius orgs around. HEA is one that really comes to mind. Also look up Howard Devore (he's in SF). His contact info is on our site under pysches.

His knowledge about hypospadius in invaluable.

Betsy

[Betsy]

My scar tissue develops into keloids. Basically, the "healing scar tissue" doesn't stop growing and the end result are scars that are red, raised, and ugly.

Betsy

[Peter]

Sorry Bruce if this thread has gone off in the direction of a discussion of scars. Following up on Sofie's and Miriam's posts, I went to the drugstore and bought a pocket mirror. I figured that after all the years of other people telling me about my scars, that I would take a closer look. I decided to do a more comprehensive self-examination. In the past, my sense of the scars was formed by touching them, and an occasional peek in a mirror. The interesting thing is that I seem to have visually found two sets of scars. One is on the scrotum, and another runs behind the scrotum to the fold of my buttocks. There is definitely scar tissue present, and it ranges in color from a translucent pale color , to a translucent pale color with red streaks, to reddish. My penis has a dark streak on the underside, and as Miriam says, I take that to be a sign of normal fusion on the penis, and no scar tissue is there to my knowledge. A few months ago, when I showed my scars to the doctor at the local hospital, he said that, in men, usually the folds fuse together as Miriam described. (These folds are the labioscrotal folds.) He said that there are sometimes "developmental problems" like mine, and the folds do not fuse. (Note: As Betsy has said elsewhere, most doctors have very little training on intersex issues.) However, seeing that there are a couple of apparently separate scars leaves me wondering. Could it be that I had two separate operations, one to surgically join the folds, and another to free the testicles? I always believed that my mother by talking of a "vaginal cleft" was contradicting my father who spoke of freeing the testicles. (I have never been able to get more than a few sentences out of my parents.) Maybe they were not contradicting each other, but actually speaking of separate surgeries. However, now that my parents have totally retreated into denial, I am still very much in the dark about my medical history.

I think this post clearly demonstrates how the culture of denial leaves patients in the dark. Many very basic medical questions about my life have not been answered in a straight-forward manner. Thanks to Dana for the many medical links that she has sent me to help me sort things out. Although more tests would be needed, I tend to think that I have a variation of 5-Alpha-Reductase Deficiency without hypospadias. I considered PAIS, but I probably did not have Gynecomastia at puberty. I have large breasts for a man, but I cannot find the clear signs of breast development associated with male or ambiguous forms of PAIS.

Peter

[BruiserB]

>>>Sorry Bruce if this thread has gone off in the direction
>>>of a discussion of scars.

ptrink|108,

Not a problem at all. I find the topic of much interest as I too am scarred from early age surgury.

To anyone,

Scars suggested I post a description of my scars and see what kind of replies or comparisons could be made. Seems to me the "Meeting Board" is not really the forum for this. What forum should I use to begin this new thread? I think this discussion may help me out and perhaps others.

Bruce

[Betsy]

Surgery Issues perhaps?

It doesn't really matter as "meeting board" includes pretty much everything on every topic.

Betsy

[BruiserB]

To all interested, please see new thread in this forum called, "Med Records/Scarring Issues".

Bruce

[Dana Gold]

quote:

"Does anyone have any recommendations for obtaining old records"

This may or may not help in acquisition of both birth and subsequent medical records. Please note that even though the link deals primarily with adoption , the general approach and links at the the bottom of the web page are exceptionally helpful in any case. They include military records (service personell and dependants), legal methods and sample letters to appraoch the institutions/agencies.

http://www.geocities.com/kerrylynn_52/HospitalsDoctorsNursingHomes.html

PS: If some idiot pop-up ad appears in right - hand corner, just click it "off" and the thing is gone....

[Kailana]

Hiya Bruce.

Heres a little info you might find interesting. I did the same thing that you did. I called 3 years ago to the hospital where i was born at. Was told that they should have records on microfilm and to give them a week to find them. One week later i called back to see if they had located them. I was told that they couldn't find any records. However just a cpl of months ago i got a new Doctor, and he suggested i go to there records office and have them send out a request for records fromMy Current Doctor Clinic. And well i did get a few records, Unfortunately not a whole lot. basically 4 pages of notes that really say nothing actually oother thena healthy unnamed boy for a month. i was basicall baby alaniz from OCT 10-Nov 5 before i was named and well that happens to match the same date on my Birth certificate. Also in the doctors notes i was scheduled to come back in a few days for further tests but there arent any notes on anything that was done. \
This may help, although im not sure. The Medical records clerk also mentioned that without getting anything in writing, most hospitals cant send you anything anyways, as it may violate personnel medical record laws, and liability as well.
Go to any hospital and pick up a release of information form from there medical records office. you can try that first or talk to a doctor and see if you can get him to assist you. As in have the clerk add that the records are being sent to the doctor for further treatment, rather then having the records being sent to you. Most hospitals have a 15-20 $ filing fee with like a 20-50 Cents per page being copied fee. If the records are being sent to a doctors office, generally the originating Hospital wont charge you , but the recieving one will.
I was actually very happy just to get the few pages that i did get even though they dont mention anything about my ambiguity?
and good luck.

O.h. also someone mentioned earlier about records being stored, they almost always are, usually around 15 years or so of inactivity. Typically it jsut takes a little while to find them. As for my own well im still trying to get more, as appears that theres more, at least what i have suggests that there should be more. Might need a lawyer. i really dont know.
Dang i keep thinking of things.
The scars, if your truely curious get a ultrasound of the perinium, and pelvic too, sometimes its truely amazing how much can be scene. Although id advise you to go to a public library first and do a little research with some Anatomy books. I happen to like the Gale ? guide to clinical anatomy? im having a major brain cramp and cant remember the name. anyways just look up male and female anatomy of the pelvis and well smooth muscle specifically where the scars are. Also be prepared to not really trust what the radiologists say, I've had 2 MRI's, 1 pelvic, and 1 testicular ultrasound/echograms. and well the only doctors who have actually ever been honest with me were actually military doctors. everyone else well its like they listen to what the radiologists say rather then whats actually there. But i was also given a CD of my last scans , so i have proof, although im finding it hard to get any Doctors to admit that im right. or acknowledge how unique my anatomy is.
Sorry for rambling ive been offline for a long while now. Best of luck on getting your records.


Rudy A. Alaniz