Monday, March 29, 2010

The Second (and Third) Opinion...Sher Institute

I am going to be completely honest here. I do not trust most doctors. Yes, they have more schooling than me and know more than I do. But they are not god and they do not know everything. It doesn't mean I don't like them or respect some of them but I go into their offices knowing that they do not know it all.

I've been through two Reproductive Endocrinologist offices in the past two years and also two OBGYNs and I have pretty much gotten the same answers from all of them, which is that they don't know why I am not getting pregnant.

All the tests (for the most part) have been done on me and I have come out with no issues or abnormalities. The same goes for my husband. So what gives?

With the diagnosis of "unexplained infertility" the doctors I have seen take a "one-size fits all" approach to infertility and just move me onto the next level of treatment. It becomes a shot in the dark for them but that isn't Ok with me because this is their "specialty" and they should know more and I am not a guinea pig.

I haven't had any treatments in 6 months and have been on a break from all of it. It's been a nice break because I've had time to calm my anxiety and just be in the moment instead of always looking one month ahead.

But over the weekend I had a chance to meet three men, one in particular who really, really impressed me with his knowledge, thoughtfulness and just general empathy for infertile couples. Up to this point, I really have not felt that way about any doctor - ever!

They were the doctors at the Sher Institute for Reproductive Medicine (SIRM). The man who started the group is Dr. Geoffrey Sher and he spoke to a room full of infertile couples on Saturday about his love of reproductive medicine and all that he knows about it.

My husband is the ultimate critic when it comes to the doctors we have met thus far and even he was  impressed.

Dr. Sher's approach is that he doesn't stop at the basic tests and he doesn't take the easy way out. He was the first to open private fertility clinics in the U.S. in the early 1980's and he studied under the men who pioneered IVF. Dr. Sher is a pioneer himself and takes to treating the cause of infertility rather than the symptom.

What I learned at this seminar is that he likely knows more about reproductive medicine than most doctors anywhere. He wasn't obnoxious about his knowledge or a "know it all" but rather he showed great compassion.

He talked about issues that you wouldn't hear your everyday RE doctor talk to you about. It is beyond some of them and sometimes people don't want to expand upon what they already do and how they treat it. But the sense you get from the doctors at SIRM is that they are always thinking ahead and beyond.

They are pushed to think outside the box and they know that not everyone is the same when it comes to infertility.

Here are some of the things I gathered from the seminar:

1. The uterus has to be receptive to the embryo for implantation and pregnancy to occur. If it is not, then continued miscarriages can occur. What this means is that if the uterus and embryo are too close genetically then the body can reject it. This is where the doctors at SIRM have pioneered tests for immune issues causing infertility. The explanation below is from Dr. Sher's fertility blog, IVFAuthority, and explains these immune issues.

There are two (2) forms of immunologic implantation dysfunction. The first and by far the most common is autoimmune implantation dysfunction. This variety is usually easily and successfully remedied through treatment with heparinoids (e.g., Lovenox, Clexane), Intralipid (IL), and corticosteroids. The second variety which is often ignored or overlooked is alloimmune implantation dysfunction.

Autoimmune implantation dysfunction is by far the most common variety. It is believed to be implicated in >90% of cases of immunologic implantation dysfunction and occurs when an immunologic reaction is produced by the individual, to his/her body’s own cellular components. Aloimmune implantation dysfunction on the other hand, arises through the reaction of the uterus to an embryo that shares certain genetic (genotypic) similarities (DQa and other HLA genes)with the recipient’s uterus causing immune cells known as natural killer (NK) cells that populate the uterine lining, to start over-producing “ toxins” known as TH-1 cytokines (TNFa and Interferon gamma). Such activated NK cells (NKa+) attack the cells of the embryo’s “root system” (the trophoblast) damaging it and so compromising implantation. Alloimmune implantation dysfunction, while far less common than the autoimmune variety is considerably more complex, much more poorly understood (even by most RE’s) and far more difficult to treat successfully. It involves a reaction by an otherwise normal uterus to the intrusion of one or more embryos that through the contribution of sperm DNA share certain immunogenetic (genotypic) similarities with the recipient.

2. This issue that arises when the uterus and embryo are too close in generic makeup leads to a "natural killer cell" issue. The good news is that in most cases this issue can be resolved with medication called Intralipid.

3. There are tests that can easily be done to find the natural killers cells and to see if you are and your partner are a DQ match. The excerpt below is from Dr. Sher's blog:

For some reason, there is a tendency to consider all couples with alloimmune implantation dysfunction (who share DQa similarities) to be incapable of achieving a viable full term pregnancy. Nothing could be further from the truth.

Let me explain: Each individual has two (DQa’s), one is derived from their mother and the other from their father. The fact that many individuals carry identical DQa's (i.e. both are the same), of necessity means their parents must of necessity have had “matching” DQa’s and yet they were born healthy and normal. The reason is that it is not the “matching” DQa that matters. It is whether upon arriving in the uterus, a DQa “matching” embryo encounters activated uterine natural killer cells (NKa+). These NKa+ release large amounts of TH-1 cytokines that attack and damage the cells of the embryo’s “root system” (trophoblast).It is the extent of such trophoblastic damage that will determine whether such an embryo will immediately “die on the vine” (implantation failure) or “limp along” for some time only to be aborted a few weeks later.

4. The SIRM doesn't just accept an "unexplained" reason for you not getting pregnant. This was the biggest factor that made me get up at the seminar and make an appt to see Dr. Peters (one of the docs at the Lehigh Valley office) tomorrow (March 30). Read below for Dr. Sher's insight:

Unexplained Infertility: True Diagnosis or Cop Out?

For about 10% of all infertile couples, the cause of the infertility cannot be readily determined using conventional diagnostic methods. Such cases are often referred to as "unexplained infertility." The truth, however, is that in most such cases, this diagnosis is in fact “presumptive” because a more in-depth evaluation would have revealed a cause.
I feel very strongly that most RE doctor's are not really looking at individual patients and their needs and are just trying what they can because it may have worked for someone else. Many patients go to the Sher Institute because they have exhausted all other possibilities. They specialize in IVF but don't be deterred if you are not at the point yet, emotionally or financially.

I am going into my appt tomorrow with an open mind. This may or may not be the answer for me but at least I am following my gut to a place where I might get more answers.

Even if you are happy with your current RE - take a look at Dr. Sher's blog. It is a wealth of knowledge and insight and you can search for any topic.

9 comments:

  1. Thank you for the nice words about SIRM and Dr. Sher. I work for Sher Institute (after first being a patient) and I can tell you that everything you say is true - SIRM is different from other centers and Dr. SHer is indeed an incredible doctor and person. Good luck!

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  2. Thank you! I am glad that I am not the only one that walked out of that seminar in Dallas last weekend feeling optimistic. I too have been through my share of REs and OBGYNs with the same answer of I don't know why you aren't pregnant. My husband was sold within the first 15 minutes of the seminar to once again change doctors. I can't wait for our consultation with Dr. Saleh. I feel positive and hopeful that we will become parents with the help of the Sher Institute because of their knowledge and care for their patients!!

    Danielle

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  3. Thank you Lisa!! I am never sure how many people read this and its nice to see comments. I just hope that people are getting something out of it. My husband and I left SIRM feeling really good about the care we will get there!

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  4. Good luck with everything Danielle! I had my appt with SIRM and my husband and I were very impressed. We both said that it was the best consult we had with a doctor thus far. I am really optimistic as well. You can't give up hope and you can't stop searching for something because I really believe that one day all things will fall into place.

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  5. This is the same post attributed to someone writing about the Dallas seminar and the NJ seminar. I suspect this was written by SIRM and not an actual patient. What a scam!

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  6. A wonderful explanation. I have my first appointment with SIRM tomorrow after also finding myself extremely frustrated with my RE who isn't looking into the causes of MY miscarriages, just trying to lump me into the category of general recurrent miscarriage when mine are so different. I am very hopeful that SIRM will provide the help that I seem unable to get anywhere else.

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  7. LeeCee - Blog Owner AKA ALISONMay 27, 2010 at 5:43 PM

    Hi anonymous...this is not a scam, I can assure you of that. I am a patient at SIRM and attended the seminar in NJ. I am not sure what you are referring to but put your name and email next time and we can discuss. My blog post has been seen by people who attended the Dallas and NJ seminars...I am guessing what you saw was someone re-posting this. Please don't bring your negativity to this site. Thanks.

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  8. I am sorry that you feel this is not a scam but I am in court with this clinic right now for thinking i was making the right choice. i had the best doctor but after I found out that this clinic was world wide I changed clinics and one of the employees told me that the doctor was a scam before the proceedure started but I could not get my money back my husband lost his job they took my eggs and took my husbands sperm without consent and used us as donors so dont be saying this is a good clinic because they are scammers the complete company is a joke to get money.and God will punish these so call doctors for this.

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  9. Hi Rene...I am sorry you are going through such an ordeal. While it is not clear from your comment what the "scam" is that you claim to have encountered at SIRM, I can say that many, many people have had positive experiences at SIRM. I can assure you that my experience there was a good one. I am currently on a break from infertility treatments so I haven’t seen any doctors in a while, but if I need to go back to SIRM, I will certainly share my story. It's sad that this experience, albeit a really difficult one as it is, is compounded by even more challenges. Just know that what you read on this blog are just my experiences, separate from any institution/company/group. Good luck to you!

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