Valentine's Wish ....To Be Pain Free!

Friday, February 10, 2012 

Valentine's Wish ....To Be Pain Free!

Here are some updates since my last posting:

• Despite my insistence that an MRI would not be an effective means to portray these painful lumps, my insurance provider's Radiologist insisted to my Primary that I was wrong and told her they would only do bi lateral MRI's vs. Ultrasound (despite the expert's suggestion on this). Of course none of the 45 masses on my legs or back showed anything, as I suspected they would not.  But once again, since nothing showed up, they are convinced at that point it's just all in my head! Au Contraire Mon Frair!!!
  
• Following my MRI, I went to see an Endocrinologist at my medical group who I was told I need to see to try to help push through the referral to the "well known outside Endocrinologist specializing in painful fat". I was told he also knew of her which gave me some confidence in securing a referral. He was pleasant, patient, thorough and was willing to look through my previous history (pathologies) and take some time to feel the masses I had complained of. He indicated to me that there is a lot of red tape at my medical group and in order to try to assist me with the outside referral, he would need a few other doctors to get on board with my diagnosis to ensure that he is not alone in his findings (since a previous General Surgeon at this same group insisted I did not only NOT have Lipomas, but that FAT WAS NOT PAINFUL)!!!  He referred me to the internal Dermatologist, Geneticist, and Pain Clinic for further review.
  
• Previous to this appointment I again reached out to the outside Endocrinologist specialist and asked about the pain and if there was anything in the interim that might help. I got some Lidocaine patches as well as some NSAID's which I was advised was more effective than taking Advil or Motrin (told to avoid those).  Of course I am anti-pain meds (as I feel they just mask the true problem) but at this point I'd try anything other than Vicodin or the sorts to help.
  
• After this appointment, I visited with Dermatology. He was a nice man who had some experience in dealing with lipomas and knew that painful ones existed but I was not convinced he had vast experience with Dercums. He indicated that it is VERY rare and that I probably did not have it. Based upon my documentation of my previous history of angiolipomas (painful Lipomas) in conjunction with my paternal history of lipomas, his clinical synopsis of my visit was  "Benign Familial Lipomatosis". I don't deny that I most likely (at a minimum have that) but I inquired about how he could determine that they were benign if no current biopsy had yet been done on the ones I currently had. His response was by his looking at them and by my history and that if they were malignant I'd be dead by now!!! His suggestion was to once again refer me to someone he knew in General Surgery. I was again not comfortable with everyone being so quick to slice and dice me up vs. sending me to the outside specialist to get a better understanding on what's going on and determine the best course of action before any surgeries are done. He called me later that afternoon and indicated that he had spoken to top medical regional reps of my medical group and that he insisted I would not get the referral and that now general surgery or plastic surgery doesn't want to get near these as cutting into me may cause other problems leading to more pain. HELLO... My father has had well over 500 of these removed by a COMPETENT PLASTIC SURGEON all of which were covered by medical insurance... where is the disconnect here!  He claimed that since there is no viable option of treatment for this nor any remedy and since he is the "low man on the pole" that there isn't much he can do for me. He at least acknowledged that I have angiolipomas based upon my history and that they probably are painful. I asked him what the plan should be for me then. He said I was in a tough boat and he doesn't know what to suggest that there isn't a solution to my condition and that he understands my frustration and pain. I asked him to document what he read from my history and what he saw.
  
• Next visit was to the Geneticist. Going into this I really didn't have much understanding as to why I needed to go there other than to further document my family history but I was open to being further enlightened. Of course each time I appear at these specialists, they don't understand what they can do for me. I just explain that I am seeking to get an outside referral to a specialist and I need your assistance documenting my condition and history. This man and his assistant were very pleasant. He looked at my history, family history and interestingly informed me that there may be an even further connection to my lipoma condition. He is with great certainty sure I have Multiple Familial Lipomatosis and Dercum's (AD) but he also considers another condition which is where a geneticist brings about a new paradigm into this equation. He noted my family history of Colon Cancer (paternal grandmother and great-grandmother), a family history of colon polyps, along with my development of cherry angiomas (little red dots all over my body over the past few years) that there may be a link to something different. The doctor asked for me to get a hold of my father's colonoscopy reports and any I may have had to review. Here is what he concluded at this visit:
  
  
  (This is important, interesting information and will be interested in seeing if the outside Endocrinologist agrees with this diagnosis if I get a chance to see her)
• Familial lipomatosis is an AUTOSOMAL DOMINANT condition, usually benign and of little medical consequence. Individuals with painful lipomas (litterally  "adiposa dolorsa" or "Dercum disease") are a subset of familial lipomatosis. The gene for neither condition is known, the distinction semantic. Specific chromosome rearrangements have been described in the lipoma of individuals with familial lipomatosis; this is mainly of academic interest but would confirm "lipomatosis" vs. "angiolipomatosis". Angiolipomatosis is an AUTOSOMAL RECESSIVE condition, and with my reported family history, which is consistent with autosomal dominant inheritence (assuming it is accurate), does not support familial angiolipomatosis. Angiolipoma can be seen as a component of PTEN gene related syndromes and Birt-Hogg-Dube Syndrome. There is no evidence based on my examination for a PTEN gene related disorder , however Birt-Hogg-Dube appears to be a remote possibility!

The Geneticist deferred me back to Dermatology for pain management (why I have no idea) related to familial lipomatosis  and suggested that oral stabilizers (cromolyn) could be empirically tried. He indicated that recurrence risk for familial lipomatosis is 50% with each conception.  He also indicated that any family history related to Colon Cancer, Pneumothorax (collapsed lung), endometrial/uterine, or breast cancer can tie a relation between lipomatosis and Birt-Hogg-Dube. More to follow on this once I get him all of the information he requested.

What I find interesting about this diagnosis is that the outside Endocrinologist (www.lipomadoc.org) indicates (if I understand it correctly) that patients with painful lipomas who have pain may not have Dercums' and can still have familial lipomatosis (MFL) but can later go on to have pain which resembles AD without it being AD (Dercum's). This is another reason why I want to confer with her. I will be most interested in her expertise in his conclusions of what his impression is.

Now the constant theme I keep getting from these doctors is a feeling of why do I care so much about the diagnosis. Actually I don't. I don't care what the name is that I have, I just want the pain to go away so I can resume my normal life. I have been SOOOOOOOO tired lately that I cannot sit or stand for more than 3 hours at a time without being in agony. I am now taking Meloxicam (MOBIC)  and Lidocaine patches which I don't notice much difference yet. MOBIC you must take with food and you cannot mix it with any other anti-inflammatory. The lidocaine patches you can only wear 12 hours at a time then 12 hours off. These doctors I have been referred to just need to document what they see so that hopefully I will get to see this outside specialist so that she can give me some real feedback on how to proceed surgically or non-surgically with the ones I have causing me so much pain.

Next stop is Pain Management department where I have to go for an  "orientation" of what they expect from you before a doctor will see you... hmmmm more red tape? OK... just go... we know what the goal is.....

How are all of you out there? Please post your comments, join my blog and share your thoughts! This forum is to educate, share and encourage!!!

Happy early Valentine's Day.....xoxox

To Your Health,
SDLipomaGirl

My Lipoma Story

January 31, 2012

During the past two weeks since creating my first Lipoma blog, I have received a large amount of mail from many of you with whom have shared similar experiences as I have with our medical system. Thank you for reaching out, sharing your story with me, and I hope we can continue to share, educate, and heal.

I want to share a little bit about me, my condition, symptoms, and experiences. In 2001, I got what I believe to be my first lipoma in my neck, very close to my right tonsil region when depressing in that area. I had a fine needle biopsy with contrast dye, however during that procedure I am certain the radiologist did not get the correct spot as the lump moves quite a bit. There was a negative diagnosis of course and on occasion when I get sick it does flare a bit but does not have the severity of pain that my other areas have at this point. It sometimes feel my throat is closing off and then becomes very alarming.

From 2001-2006 I was very active  and was in the Health and Fitness industry.  I hold multiple certifications as a Trainer and Wellness Coach and hold certifications in nutrition, so if any of you do need help on that front, feel free to ask.  In fact, my specialty area is/was obesity and I worked with thousands of men, women, and children helping them to enhance their lives with exercise and nutrition programs. A very prominent Endocrinologist in San Diego also used to refer his patients to me for after care after they had worked with him.

In 2004, I noticed lipomas forming on my left tricep area as well as on my right arm just above the elbow. Both were severely painful as they depressed on nerves and effected both my work outs and when I used my hand for writing. In 2004 I was with a good insurance/health group who referred me to a Hand Surgeon specialist who examined the masses and determined we should wait a bit and see if they continued to be painful or if they would go away with some lidocaine treatments. In 2006 I returned to see that doctor when the lipomas grew and also noticed getting about 8 behind my knee areas about the size of quarters.

During this time, I also went to see the endocrinologist because I was convinced that something had changed in my body where I was having a VERY difficult time with losing weight. Keep in mind, I was on a very healthy diet and exercise regimen and was very frustrated with my inability to get the weight off working out 2-3 hrs per day.  Upon many tests (thyroid, diabetes, etc), he suspected with great confidence that I had a LEPTIN disorder. Leptin is a protein hormone made by adipose, or fat tissues. The more fat tissues there are, the higher leptin levels get. Leptin signals the hypothalamus to decrease the appetite. It has other roles too, such as in proper development of the body. He determined that my body was not producing adequate levels of leptin not allowing my body to process and/or break down the fat properly. Unfortunately  there were no clinical trials going on to determine what treatment could be done. His suggestion was do continue o with a low fat, high protein, low carb diet and that I would probably need to exercise more than the average person to lose weight.

In 2006 I went to see the aforementioned hand surgeon and had the two painful lipomas in my left tricep and right arm removed. Upon removal, I immediately stopped having pain in those areas. I have just recently summoned the pathology reports and notes from that doctor to see the exact pathology notes and to prove yet again to my current insurance group and doctors that I do, indeed have a history of these, despite their continual insistence that FAT IS NOT PAINFUL and that I DO NOT HAVE LIPOMAS!

In 2009-2011 I began to get more masses that started to become painful. These are most notable in my lower left back, upper thighs and lower thighs, hips, groin and again behind my knees. There are a few small ones on my arms as well. The ones in my back and legs create ongoing dull and often stabbing pain which pulsates and radiates from the back into the groin, into the ares on my legs. I know this sounds like a sciatica but it isn't. I went to see my primary at my new inclusive insurance/medical group (won't name names at this time). She seemed to agree that they may be lipomas. She set an appointment with me to see a Physicians Assistant who handled these. Upon finding out who the apt. was with I rejected the apt. and demanded that the referral be made to plastic surgery. After debating with them for over two weeks they indicated they would not see me in plastic surgery  (cosmetic) and would try to get me to see someone in general surgery.

In late 2011 I went to see a General Surgeon (young female) who was the most outrageous doctor I had ever met. She was rude, completely dismissed my history, and told me I had generalized fat and that fat was not painful. She insisted that I needed to exercise and the fat would go away. I asked her what she knew about lipomas and that I didn't think she understood my situation. I later filed a complaint against her for her lack of open mindedness in even being willing to look into what I am saying vs. dismissing my complaints of pain and the lipomas given my previous history of them.

I should mention, as I have in my bio, that there is an apparent paternal genetic disorder of these lipomas running throughout my family. My father has had over 500 of these removed from his body since 1983 and has hundreds more. My brother has them, my uncle and two male cousins have them. Mine appear to be the only ones that are painful.

I have tried since to get in to see this General Surgeon's boss, the head of general surgery but he has refused to return my calls and doesn't seem to have appointments open. At the beginning of 2012, I recommenced the push with my primary doctor to get me in to the right person. I went back to see her and complained of the pain I was having. At this time, I had started to do more research on the web, came across the MDJunction forum as well as other Lipoma forums and read a lot of white papers and research being done. I have also always sought out any Lipoma Clinical Trials, but my timing has never been good in finding one in my area.

I came across the name of an Endocrinologist MD and PhD in San Diego (outside of my current plan) and began reading some very enlightening information. She appears to be one of only two doctors in the United States who may actually be aware of "painful fat". She happens to practice in San Diego (where I reside) and is affiliated with UCSD Medical and the VA. The other doctor is based out of Mass General on the East Coast. I highly encourage ANY of you who may THINK you have painful lipomas to review her website at www.lipomadoc.org. Please keep in mind that she gets 1,000 of emails and calls from people like us and she does run a practice so be respectful of her time and do all of your research first. Make sure you read up and understand the various type of "painful fat" there are out there: Dercum's disease,  familial multiple lipomatosis (FML), Madelung's disease and lipedema (and lipo-lymphedema). Each of these are distinctly different and she explains this on her web site. Additionally, under the "MORE" section of her web site where it says Video and Radio, I encourage you to listen to all 3 of her videos (especially the one on Dercum's - third one down) and TAKE NOTES.

As I mentioned in my first blog, EDUCATION is key! Not only educate your self so that you can be your own advocate, but you must take these notes to educate those who are not hearing your complaints. Bring in a copy to your doctors and tell them to read it, document that you gave it to them and ask them to communicate with these specialists to help you find out what is going on.

I recently walked right into the Administrator's Office at my health plan/medical group without an appointment and filed numerous complaints and sat down with her and had a frank discussion about my healthcare and my poor experiences with the doctors. Being a thorn in their side to get them to pay attention to what I am saying may sadly be what is necessary to get the referral I need. Trust me, they don't want law suits, but you must be persistent and do NOT roll over if they have deaf ears to your pleas for help. Do not suffer. Please don't be quick to self diagnose. I still cannot say for sure that I have any one of these disorders, but I will bet that all of my issues with leptin, weight management, the masses, the lipomas, and the pain are ALL RELATED. Getting your case in front of the RIGHT person and or doctor who will listen, research, and advocate for you is KEY and critical to getting you the treatment you deserve. We pay good money for our healthcare (at least I do as an independent insurer) and I told them that if I have to go out on my own, spend thousands of dollars to see this specialist and if I get diagnosed with something when they have been telling me I have nothing they will not like the outcome.

As of today, I have found a doctor at my group who is an Endocrinologist who actually knows this outside specialist who I pray holds the key to getting me this outside referral to see her so that I can be diagnosed properly.  I won't bore you with the past two weeks of MRI's they had me do despite my INSISTENCE that the MRI would not show anything. I fought to have an Ultrasound done which can sometimes show Lipomas, but the Radiologist insisted I was wrong, even though the outside specialist is the one who told me that the Ultrasound is the only scan that may show them from her experience. Mind you, this is the ONLY area she specializes in so she is a true specialist in this field.

I will keep you posted on my status  later in the week.

To be continued......

To Your Health,
SDLipomaGirl

Lipoma Support Blog's Creation -- The First Blog

Friday, January 20, 2012

Lipoma Support  Blog's Creation -- The First Blog

Why a Lipoma Blog you may ask? The answer is quite simple. As I sat in bed last night after a year of frustration, helplessness, pain, confusion, and utter disbelief at our medical system and my treatment, I felt that I needed a place to share my thoughts, feelings and you know, vent a little, about my condition and findings.

I know many of you out there are going through or have gone through similar feelings and experiences as myself (as I have read hundreds of your stories and postings). I envision this to be a place of expression, education, and sharing. A future blog about my history and condition will be forthcoming, however I feel it is more appropriate that my first blog be about my intent and purpose of creating a dialogue of personal information and history.

I am utterly amazed that there are so many doctors out there today treating patients, or not treating patients properly, because of their lack of knowledge and/or unwillingness to have an open mind that they may not know everything. Actually, I guess it really doesn't surprise me in the sense that we cannot expect every doctor to know everything about every condition out there. This is why there are specialists. But even some of the specialists don't know everything... even though they might like to think they do. The problem, as I experience it,  is being able to get in front of the RIGHT specialist who actually knows what you need them to know!  In my opinion, these limitations and "red tape" is a huge problem within our Medical System. Many of you know, going outside your "network" if you are on an HMO and the utter "battle" you have to fight to get it covered by insurance is a nightmare.

The other main problem I see, is the lack of collaborative communications amongst your doctors to collectively put their educated brains together and THINK the condition, symptoms, etc. through. Isn't this what makes good companies GREAT? Misdiagnoses, lack of communication, and poor readings of tests is what left my mother in a late stage of non-small cell lung cancer diagnosis with little hope after being misdiagnosed twice with two unnecessary, unrelated surgeries. No, she didn't make it.. and that was over 13 years ago. I'd like to think they we've matured as a society with all of the research out there to be more open minded in the medical community.

Okay, so perhaps I am not your "average" patient who looks at all doctors with googly eyes and thinks they are G-D who I bow down to and agree to whatever diagnosis they come up with. Maybe it is because my mother journaled her condition, pain, and feelings, that I now feel compelled to do the same. Thankfully my father was an incredible advocate and partner for her. Maybe our family experiences with her medical treatment is the fire under my belt that compels me to continue to push to get to the bottom line of what is causing this pain and what are these masses in my body!!

This is your body! Only you know what you feel. I'm more worried at this point about suffering from a heart attack or panic attack from all of the anxiety and stress dealing with these doctors creates. What is my goal you may ask..... To get a referral from my medical group/insurance to see the ONE of two Lipoma specialists in the country (one happens to practice in San Diego, where I reside).

If there is any ONE point I really want to stress in this first blog, it is that I urge ALL of you to be ASSERTIVE, stand up for yourselves... be your own advocate... push these doctors and don't be afraid of  maybe knowing something that they don't. I don't want to lump ALL doctors into this category, because there are some REALLY GREAT ones out there, some of whom I have seen and have nothing but priase for them.For those doctors, I thank you and I go out of my way to let their superiors know how much I appreciate their good "bedside manner" and professionalism!

However, there are still some (young and old) who think that their title as MD gives them the superiority of knowledge and take offense to any patient (with any degree of education or research) who may challenge their diagnosis or treatment. I have nothing but the utmost respect for anyone in the medical field and with whom has a higher education. However, there are going to be patients, like myself, who have some background in biotechnology, research, and through life experiences, have dedicated themselves to immersing themselves in information about their condition or for family members. When a patient, such as myself, goes to a doctor for help, I expect that they:

• 1) Appreciate that I have taken the time to learn about the ailments I am having 
• 2) Listen to what I am sharing 
• 3) Be open minded about what I am sharing 
• 4) Be open minded that they may not know everything 
• 5) Be open minded and not egotistical enough to be able to say.. hey.. I am not sure, let me look into this and ask some colleagues and get back to you.
   

This has always been my approach to  clients in my field of any business I have owned or operated. Am I asking too much? On the opposite end, as a patient, I don't think I know everything; I am open to the doctor's wisdom, and keep and open mind.

Please do not suffer in silence. If you are not happy with the answers or diagnosis you receive. Get another opinion and do your homework.  Do not assume  that just because your doctor does not agree with your or doesn't know that they are always 100% right. This is the most important point I want to make. Do your due diligence, be your own advocate... and don't let anyone stop you from doing what YOU KNOW IS RIGHT based on how you feel.

Also, please be careful about everything you read on the Internet. While I think there is a GREAT wealth of fantastic information which has been very helpful for me, there can also be information that is not accurate. Sorry, just had to say it. With that being said, there may be things I state in my blogs, or comments that others make that may not be 100% correct, or not applicable to your situation.

Please use the information wisely and with caution and take the time to do your research, and share the information with your health care provider. If you are not getting satisfaction and are still in pain, go to the next level, and seek the help of your medical establishment's Patient Advocate or Administrator. You will be surprised...they may well be the key to getting the treatment you deserve and have been seeking (more about that later).


I look forward to getting to know other "lumpy people" out there (I hope no one takes offense to my use of this term. I use it with the warmest of intentions (I do have a sense of humor and that is the comedic side of me, so I do apologize if that offends anyone).

I wish everyone health and wellness in 2012 and I welcome your feedback and stories.

To Your Health,


SDLimpomaGirl