Do u do currective work if it was done out side us and how much is it and is it worth going thru all the pain and surgery again?

Carla

January 20, 2012

Good afternoon Carla,

Yes, we do.  Consultation fee is 250.

Start to prepare a work list with photos.

Thank you for your interest in what we do.
Hope you like what you see.

Harold M. Reed, M.D.
305-865-2000

The syndrome is named after two doctors, Edvard Ehlers of Denmark, and Henri-Alexandre Danlos of France, who identified it at the turn of the 20th century.

Contents

 [hide]

• 1 Classification
  • 1.1 Other types
• 2 Signs and symptoms
• 3 Genetics
• 4 Diagnosis
  • 4.1 Differential diagnosis
• 5 Management
• 6 Prognosis
• 7 Epidemiology
• 8 Society and culture
• 9 In other animals
• 10 See also
• 11 References
• 12 External links

[edit] Classification

In the past, there were more than 10 recognized types of Ehlers?Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names.^[4] These six major types are listed here. Other types of the condition may exist, but they have been reported only in single families or are not well characterized. Except for hypermobility, the specific mutations involved have been identified and they can be precisely identified by genetic testing; this is valuable due to a great deal of variation in individual presentation of symptoms which may confuse classification of individuals on purely symptomatic basis. In order of prevalence in the population, they are:
Name Number Description OMIM Gene(s)
Hypermobility type 3 Affects 1 in 10,000 to 15,000 and is caused by an autosomal dominant or autosomal recessive mechanism. Mutations in either of two separate genes (which are also involved in Vascular EDS and Tenascin-X deficiency EDS, respectively) may lead to this variant. Extreme hypermobility is the hallmark of this type. 130020 COL3A1, TNXB
Classical types 1 & 2 Affects approximately 1 in 20,000 to 50,000 people. It is caused by autosomal dominant mechanism and affects type-V collagen, as well as type I. Type 1 typically presents with severe skin involvement, and type 2 presents with mild to moderate skin involvement. 130000, 130010 COL5A1, COL5A2, COL1A1
Vascular type 4 Is an autosomal dominant defect in the type-III collagen synthesis; affecting approximately 1 in 100,000 to 250,000 people. The vascular type is considered one of the more serious forms of Ehlers?Danlos syndrome because blood vessels and organs are more prone to tearing (rupture). Many patients with EDS type 4 express a characteristic facial appearance (large eyes, small chin, thin nose and lips, lobeless ears), have a small stature with a slim build, and typically have thin, pale, translucent skin (veins can usually be seen on the chest and abdomen). About one in four people with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40. 130050 COL3A1
Kyphoscoliosis type 6 Is an autosomal recessive defect due to deficiency of an enzyme called lysyl hydroxylase; it is very rare, with fewer than 60 cases reported. The kyphoscoliosis type is characterised by progressive curvature of the spine (scoliosis), fragile eyes, and severe muscle weakness. 225400, 229200 PLOD1
Arthrochalasis types 7A & B Is also very rare, with about 30 cases reported. It affects type-I collagen. The arthrochalasia type is characterised by very loose joints and dislocations involving both hips. 130060 COL1A1, COL1A2
Dermatosparaxis type 7C Also very rare, with about 10 cases reported. The dermatosparaxis type is characterised by extremely fragile and sagging skin. 225410

[edit] Other types

Although the above classifications are well defined, it is rare for a case to fit neatly in a single category, and cross-over symptoms lead to under-diagnosis or mis-diagnosis. So patients should not rely on the “fact” of having a certain type of EDS if cross-over symptoms are evident and might be life-threatening.

“The large number of distinct types of the Ehlers?Danlos syndrome that have already been identified indicates great heterogeneity, but clearly that heterogeneity is not exhausted by the present classification.” [1] Forms of EDS within this category may present with soft, mildly stretchable skin, shortened bones, chronic diarrhea, joint hypermobility and dislocation, bladder rupture, or poor wound healing. Inheritance patterns within this group include X-linked recessive, autosomal dominant, and autosomal recessive. Examples of types of related syndromes other than those above reported in the medical literature include:

• 305200 ? Type 5
• 130080 ? Type 8 – unspecified gene, locus 12p13
• 225310 ? Type 10 – unspecified gene, locus 2q34
• 608763 ? Beasley-Cohen type
• 130070 ? Progeroid form – B4GALT7
• 606408 ? Due to Tenascin-X deficiency – TNXB
• 130090 ? Type unspecified

[edit] Signs and symptoms

 
Individual with EDS displaying hypermobile joints.
 

Individual with EDS displaying skin hyperelasticity

Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of collagen. EDS most typically affects the joints, skin, and blood vessels, the major signs and symptoms include:

• Loose, unstable joints that are prone to: sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness) ^[5]
• Early onset of osteoarthritis
• Easy bruising
• Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse) ^[6]
• Chronic fatigue
• Flat feet
• High and narrow palate, resulting in dental crowding
• Vulnerability to chest and sinus infections
• Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
• Velvety-smooth skin which may be stretchy, is often translucent, and can contribute to underestimations of chronological age
• Abnormal wound healing and scar formation
• Low muscle tone and muscle weakness
• Myalgia and arthralgia^[7]

Other, less common signs and complications may include:

• Headaches caused by an acquired Arnold-Chiari malformation (brain disorder)^[8]
• Osteopenia (low bone density)
• Talipes equinovarus (club foot), especially in the Vascular type
• Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility^[9]
• Functional bowel disorders (functional gastritis, irritable bowel syndrome)
• Gastroparesis
• Dental issues, including early-onset periodontitis
• Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy) ^[10]
• Vascular skin conditions: Raynaud’s phenomenon, Livedo reticularis
• Blue sclera
• Swan neck deformity of the fingers ^[11]
• Insensitivity to local anesthetics.^[12]
• Premature rupture of membranes during pregnancy ^[13]
• Platelet aggregation failure (platelets do not clump together properly) ^[14]
• Weak muscle tone (hypotonia) in infancy, which can delay the development of motor skills such as sitting, standing, and walking
• Arterial/intestinal/uterine fragility or rupture

 
Because it is often undiagnosed or misdiagnosed in childhood, some instances of Ehlers?Danlos syndrome have been mischaracterized as child abuse.

[edit] Genetics

Mutations in the following can cause Ehlers?Danlos syndrome:

• Fibrous proteins: COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, and TNXB
• Enzymes: ADAMTS2, PLOD1

Mutations in these genes usually alter the structure, production, or processing of collagen or proteins that interact with collagen. Collagen provides structure and strength to connective tissue throughout the body. A defect in collagen can weaken connective tissue in the skin, bones, blood vessels, and organs, resulting in the features of the disorder.

Inheritance patterns depend on the type of Ehlers?Danlos syndrome. Most forms of the condition are inherited in an autosomal dominant pattern, which means only one of the two copies of the gene in question must be altered to cause the disorder. The minority are inherited in an autosomal recessive pattern, which means both copies of the gene must be altered for a person to be affected by the condition. It can also be an individual (de novo or “sporadic”) mutation. Please refer to the summary for each type of Ehlers?Danlos syndrome for a discussion of its inheritance pattern.

[edit] Diagnosis

A diagnosis can be made by clinical observation. Both DNA and biochemical studies can be used to help identify affected individuals. In some cases, a skin biopsy has been found to be useful in confirming a diagnosis. Unfortunately, these tests are not sensitive enough to identify all individuals with EDS. If there are multiple affected individuals in a family, it may be possible to perform prenatal diagnosis using a DNA information technique known as a linkage study.

[edit] Differential diagnosis

[edit] Management

There is no cure for Ehlers Danlos Syndrome. The treatment is supportive. Close monitoring of the cardiovascular system, physical therapy, occupational therapy, and orthopedic instruments (e.g., wheelchairs, bracing) may be helpful. One should avoid activities that cause the joint to lock or overextend.

A physician may prescribe bracing to stabilize joints. Surgical repair of joints may be necessary at some time. Physicians may also consult a physical and/or occupational therapist to help strengthen muscles and to teach people how to properly use and preserve their joints. To decrease bruising and improve wound healing, some patients have responded to ascorbic acid (vitamin C).

[edit] Prognosis

The outlook for individuals with EDS depends on the type of EDS with which they have been diagnosed. Symptoms vary in severity, even within one sub-type, and the frequency of complications changes on an individual basis. Some individuals have negligible symptoms while others are severely restricted in their daily life. Extreme joint instability, pain, and spinal deformities may limit a person’s mobility. Most individuals will have a normal lifespan. However, those with blood vessel involvement have an increased risk of fatal complications.

EDS is a lifelong condition. Affected individuals may face social obstacles related to their disease on a daily basis. Some people with EDS have reported living with fears of significant and painful ruptures, their condition worsening, becoming unemployed due to physical and emotional burdens, and social stigmatization in general.

[edit] Epidemiology

Ehlers?Danlos syndrome is an inherited disorder estimated to occur in about 1 in 5000 births worldwide. Initially, prevalence estimates ranged from 1 in 250,000 to 1 in 500,000 people, but these estimates were soon found to be vastly inaccurate as the disorder received further study and medical professionals became more adept at accurately diagnosing EDS. In fact, many experts now believe that Ehlers?Danlos syndrome may be far more common than the currently accepted estimate due to the wide range of severities in which the disorder presents.^[18] However, the prevalence of the six types differs dramatically. The most commonly occurring type is the hypermobility type, followed by the classical type. The other types of Ehlers?Danlos syndrome are very rare. For example, fewer than 10 infants and children with the dermatosparaxis type have been described worldwide. Ehlers?Danlos affects both males and females of all racial and ethnic backgrounds, although some types are more common among certain groups than others.

Yes have been on hormones for 7 1/2 years and hace been living full time as a woman fr 7 years now. I have natural grown breast.
Specific_Questions: On December 21 2010 I had a heart attack and althoe I am doing real good i was told that I may never be able to have my SRS. Now I ask is it still posable to have my SRS and if not is there a sugery that will remove the testies and shorten the penis to where I will apear more female down there with no buldge. If so can you give a ball park priceon what it would cost for me to have my SRS or other feminizing sugeries to be able to fit in and feel a bit more normal in apearance.  Carla

Good afternoon Carla,

If you have a letter of medical clearance with reference to a stress EKG, we can do an orchiectomy under local with IV sedation, also perhaps scrotal removal.  We cannot do any surgery that requires general or spinal anesthesia in your case because the Ameican Society of Anesthesiologist’s physical status classification places you in a class 3 risk.    Please be sure your estrogen levels are carefully monitored to keep you in a safe range, as they are coagulopathic.  Can produce blood clots.

Cordially,

Harold M. Reed, M.D,.
305-865-2000

I would like to be considered for the 12 in 2012 grant program. I have been transitioning now for over eight years. I’ve also been trying to loose weight.
Current weight is 230 right now. However, things are changing and I should be down to about 140 by spring.

Let me know the particulars and what I have to do on this end.

Thank You

Mellanie

Hi Mellanie,

Thank you for your interest in what we do. 

This year we are re-vitalizing our Grant with a slogan similar to one a few years ago (“the first 10 in 2010″), now it is “the first 12 in 2012.”

So far 5 positions have been filled this month.

Call the office and speak with Anne our amiable office manager for details. We re-open on Tuesday, January 3rd.

Be assured I will send you more information and a reprint of a very comprehensive article that was published a few months ago in Seminars in Plastic Surgery.

Happy and Healthy New Year to you and your loved ones,

Harold M. Reed
1111 Kane Concourse, Suite # 311
Bay Harbor Islands, Florida 33154
305-865-2000

Dear Dr. Reed,

I have been on hormones for 8.5 years . My journey is almost complete as I am seeking sexual reassignment surgery to complete my conversion into a female.
Specific_Questions: I want to know how much generally is the cost for total SRS with DR. Reed. How much generally will a patient have to spend for expenses during the trip to Miami for SRS. Also, I have a 5.5 penis when erect; how long deep should i expect my vagina cavity to be?
HEAR: Internet research.  Erin

Decemeber 10, 2011

Good morning Erin,

Thank you for your interest in what we do.  Sounds like you are well on your way.   Our fees are posted on our web-site/  Allow 500 for stents, about 115 for medical supplies such as oral medications, disposable bed protectors, a ring pillow, inexpensive housecoat, 500 plus for motel costs, 120 for food (our hotels have free breakfast spreads).   The rest is travel and ground transportation (shuttle service is more economical than a cab).

Big picture: if you have surgery with us you’ll probably reduce your overall expenses by several thousand dollars in that we own our facility outright.

With scrotal extension which we perform on 80% of our patients (gratis) you can expect a depth of 5 to 6 inches initially and more with dilation.   Keep in mind, true for all MTF patients, despite your stretched penile shaft skin length, you will lose 2 inches just going under the pubic symphysis.  However with the graft you more than recover this.

This December, 2011 we re-opened a Grant program with the slogan “the first 12 cases in 2012″ (was formerly the first 10 in 2010), based upon need of course.

After reading the attached, if you believe I am the doctor for you, please initiate a consultation over the phone with our office by sending us your name, address, and telephone number in an envelope along with a check for 250.  We’ll get started ASAP.  We’ll have a lot to talk about.

The grant should reduce your fees by about 20% from our typically affordable price.  Certain restrictions regarding age and medical history may apply.

Cordially,

Harold M. Reed
1111 Kane Concourse, Suite # 311
Bay Harbor Islands, Florida 33154
305-865-2000

Some patients need followup for a few days. When it comes to visiting patients at non-specified hotels/motels, sorry I do not do this. The 2 hotels we do recommend are the Baltic (advanced tourist class) with abundance of white linens, an appetizing breakfast spread and coffee in the reception area, and an amiable hostess Christina. Or Daddy O’s (more posh) with assistant manager Courtney and her lovely staff.

These are not the best of times, you know that. I will not walk with a doctors bag in a dimly lit corridor, in a strange budget hotel/motel to see one lonesome patient who wishes to save $25 a day on a room. If you look like a woman, in the eyes of Florida medical ethics, you are a woman, and the availability of another woman in the room if need be is a standard of care.

Christina has been looking after our patients for 4 or more years, and does many things no hotel front desk person will ever do.  For example: go to the CVS Pharmacy and pick up a prescription (they won’t deliver), make breakfast, fuss over you a little bit, provide some cheerful company during the day, etc. Call me if there is concern.

Other doctors may work differently, but that’s how we do it.

Harold M. Reed, M.D.

Dear Dr. Reed,

Not on hormones.  I am an MTF and seek vaginoplasty.   Specific_Questions: What is the perfect surgery.  Heard about you on the Internet.

Juan

December 8, 2011

Good morning Juan,

Thank you for your interest in what we do. There is no perfect surgery,  but surgery that should provide gender confirmation with how you feel about yourself and surgery that should be you a turn on to most intimate sexual partners.  Look at examples of our work and web-sites of other surgeons as well.  See if you like which is shown.  Caveat: you are looking at the best of the best each has to offer.  Untoward results seldom make the web-sites unless a doctor wants to show you how he/she revised someone else’s work.

This December, 2011 we re-opened a Grant program with the slogan “the first 12 cases in 2012″ (was formerly the first 10 in 2010), based upon need of course.

After reading the attached, if you believe I am the doctor for you, please initiate a consultation over the phone with our office by sending us your name, address, and telephone number in an envelope along with a check for 250.  We’ll get started ASAP.  We’ll have a lot to talk about.

The grant should reduce your fees by about 20% from our typically affordable price.  Certain restrictions regarding age and medical history may apply.

Cordially,

Harold M. Reed
1111 Kane Concourse, Suite # 311
Bay Harbor Islands, Florida 33154
305-865-2000

I know this email is almost a year after your response. I was able to contact Dr. M. but unfortunately he was unwilling to do a phalloplasty on me. I have been in continued therapy for this and I’ve pretty much come to the conclusion that an ordinary phalloplasty is not for me until I feel like I’ve exhausted all other options.

Was a genetic male, had a vaginoplasty and would like a penis again. 

So I have a new question for you: I know that at least theoretically, given the various organ transplants that have been in the news lately (hand, face, etc) a penis transplant is possible. In fact, they even tried it in China about 5 years ago but had to remove it because of a psychological reaction between the patient and his wife. And I know there are downsides to organ transplants such as anti immune system drugs. However, I feel the trade off – FOR ME – is worth it. My quality of life regarding what I have between my legs is awful (whereas the rest of my life is fine) so I want to try to find a doctor and a medical board willing to let me try a transplant. I know this is a truly ONE IN A KIND thing. I would be maybe the 2nd person in the entire world to have this done. It’s not something that most doctors would be able to even begin to point me in the right direction – however, I’m wondering IF you can help me in my endeavor. Can you give me any idea where to start on finding such a doctor who would be willing to do this?

Raulene

Decemeber 7, 2011

Good morning Raulene,

Problem # 1 is to find a therapist who will say this is right for you.  Given the unusual nature of your request this could be a stumbling block.

Then look at the attached letter and choose another surgeon.  Consider Dr. Salgado, Dr. Djordjevic, Dr. Djinovic.

Best wishes,

Harold M. Reed, M.D.
305-865-2000

I WAS BORN AS A MALE BUT FROM NY SOUL I WAS FEMALE. MY ATTRACTION AND BIHAVIOUR WAS LIKE FEMALT .I WANT CHANGE MYSELF COMPLETELY .PLEASE HELP ME . YOU CAN CONTACT ME THROUGH A EMAIL.PLEASE HELP…  *(personal data deleted)

Makawee Silverhe…s   Laramie, WY

December 3, 2011

Good morning Makawee,

You are a very special person, a native American Indian with a very  special name.

This December, 2011 we re-opened our Grant program with the slogan “the first 10 cases in 2012″, (had been the first 10 in 2010) based upon need of course.

After reading the attached, if you believe I am the doctor for you, please initiate a consultation over the phone with our office by sending us your name, address, and telephone number in an envelope along with a check for 250.  We’ll get started ASAP.  We’ll have a lot to talk about.

The grant should reduce your fees by about 20% from our typically affordable price.  Certain restrictions regarding age and medical history may apply.

Cordially,

Harold M. Reed
1111 Kane Concourse, Suite # 311
Bay Harbor Islands, Florida 33154
305-865-2000

Dear Dr. Reed

I was on hormones back in 1998 and have been on hormones for some years straight till about 2009 I have stopped taking the hormones. But I have legally changed my name to that of a female and have been living full time as a woman since 2002. I am currently living my life full time as a woman. I am listed female on most of all my legal documents. I have not had electrolysis but I intend to. Also I would like to have breast enhancements if you think I would benefit from it.
Specific_Questions: Could you mail me information about the SRS procedure. I am very interested in finally being completely female its one thing to live as a woman but to wake up and go to sleep knowing you have the parts that make one more female would be stress off my life. I have had a heart attack back in November 9, 2009. I believe there was heart damage mild. I was wondering if that will hinder me having my surgery. Also I was wondering if there is anyway you could write a letter before the operation that says one has altered their sex to female or is in your estimation female. I also would like to have information mailed to me at my address. I think you do very good work. I believe I should have you do the surgery.I was also wondering whenever I masturbate I imagine that I am a female.Should I stop masturbating as a male. I just want the surgery and to be able to orgasm as a woman.Also I love anal sex with my dildo. Is there any risk in doing that over a long period of time. It is all I have that makes me feel like a woman and    Zelda

Good morning Zelda,

Thank you for your interest in what we do.  That you have had a prior heart attack puts you into the class 3 ASA category and for that reason, you need to be operated upon in a hospital as opposed to an office surgery center appended to a doctors office.
Please consider other resources.

I cannot write a letter to say you are a female based upon anatomy, but suggest you have your therapist write a letter that you live as a female and that will get your passport changed.  And might, might help in some states with other legal documents such as a driver’s license.

Best wishes,

Harold M. Reed, M.D.