|
|
|
Four of our patients describe their UFE experience. I will update their statements as they send them to me. Links have been added to provide more information, where appropriate. John Thomas, M.D.
LoriJamieMarciaJean
LoriI had suffered from a fibroid for three years. Initially it was the size of a golf ball, but then grew steadily over the years to the size of a smallish football. It basically went from hip to hip and pushed on the wall of my stomach to the spine. It stretched and flattened my uterus up and over it. It pushed down on my bladder and fed itself on a good portion of my blood supply. I couldn't sleep on my stomach, I had to get up several times during the night to urinate, and it irritated my restless leg syndrome to the point of not being able to sit through a movie at home or a theatre, drive in the car for more than 30 minutes comfortably and sex was at times painful. My periods lasted 7 days and were not painful but debilitating in the sense that for the first three days I had to be near a bathroom every 50 minutes throughout the day and night. I went through one box each of super plus, super, and regular size tampons as well as one big bag of regular pads that I had to wear with the tampon and one big bag of overnight pads which I had to wear three at night. If I moved while I slept, I had to be prepared to jump up and run to the bathroom and change all three pads because they would be soaked before my feet hit the floor. (It was pretty expensive every month. I would finish every box of tampons and all of the pads.) I had to plan my vacations around my period. I visited my gynecologist every six months to a year to monitor the growth of the fibroid and at a certain point it was suggested that I might be able to have the fibroid "filleted" off the top of my uterus, but to determine that, I would have to have a dye test and sonogram done. It was also suggested at that time, which was two years into the growth of the fibroid, that I might have fertility problems. It was a lot of information to take in and I was only 35. My mother was in the hospital suffering from ovarian cancer and died the next day. I put the issue of my fibroid out of my head until one year later. At that time the fibroid had gotten so large that it pushed my stomach out and was too large to operate on without having a hysterectomy done. At age 36 and not having children yet, I just didn't like that option, it was terrifying. My gynecologist of 13 years plus, who I trust implicitly, informed me of one more option called uterine fibroid embolization. He explained a simple process of simply blocking the blood flow to the fibroid, therefore allowing it to shrink away and all I would have to do to see if I was a candidate was have a simple MRI. My gynecologist recommended wonderful, Dr. J.T. I had my MRI, a consult with Dr. J.T. and two weeks later the uterine fibroid embolization procedure. I entered the hospital on a Wednesday morning and was discharged the following afternoon. I had some pain and discomfort for a short time, but nothing that typical prescribed painkillers wouldn't relieve. I took the full ten day recovery time that was suggested and returned to work without any problem at all. I was an orthodontic assistant working in a high volume office and was up and down and running around all day. Within three weeks I was sleeping on my stomach for the first time in three years, my restless leg syndrome was completely gone, I could sleep through the night without having to urinate, and my periods shortened to 3-5 days. I use regular to super tampons only when I feel like it and thin pads the rest of the time. I can sleep through the night with a regular pad. The best part of all is that I am much healthier. The fibroid had taken up so much of my blood that I became severely anemic. My hemoglobin was at 4. My gums had turned white, my lips were pale and I couldn't walk across the floor without my heart beating out of my chest and feeling faint. I was the walking dead. I was always a very athletic person. Now I am a normal body weight for my six foot frame, everyone has noticed my coloring has come back, I can jog, play golf, swim, and dance all night if I want without being winded. The uterine fibroid embolization process that Dr. J.T. preformed on me has changed my life in so many positive ways and I still have the possibility of having children in the future. At six months after the procedure, I write this message feeling healthy, positive and hopeful that many other women out there will have the same opportunity that I did. I owe it all to my gynecologist for being knowledgeable of the most current options regarding uterine fibroids and Dr. John Thomas for skillfully performing the successful embolization.
Jamie
Hello! My name is Jamie and I’m very excited about sharing my UFE experience with all of you. I’m not particularly knowledgeable in medicine. So, when I write about medical options in this testimonial you should do your own research to learn the specifics. Today’s date is July 31, 2005. I turned 42 in June of this year. My menstrual cycles became increasingly more difficult from 1995-2000. My gynecologist diagnosed the fibroids and recommended a hysterectomy. I wasn’t keen on that idea because I have never had children. I still wanted the opportunity to try and get pregnant. My gynecologist ordered an ultrasound and prescribed hormone shots for six months in an effort to reduce the size of the fibroids. I got some relief from the awful symptoms associated with fibroids. But, I had to deal with the menopausal side effects of the hormone shots like hot flashes. After six months the next ultrasound revealed that the fibroids were the same enormous size they were before the treatment. My doctor did not recommend the abbreviated procedure called myomectomy because my fibroids were so huge and numerous. By the year 2000 I was almost a shut in. I had EVERY negative symptom of fibroids. I lived that way until 2004 when I began to venture out for very brief periods of time. At that point I was trying to accept the fact that I would have to have a hysterectomy in order to ever regain some semblance of normalcy in my life. This option also meant I’d never be able to consider becoming pregnant. My husband researched my condition on the Internet and told me about UFE and Dr. John Thomas. I don’t think I grasped what my husband was saying to me the first couple of times because I thought I had exhausted all my options. Eventually it sunk in and I called the number on the website. I went in for an MRI one morning and saw Dr. Thomas a short time later on the same day. He gave me a positive evaluation and set an appointment for me to have UFE. I was a bit nervous so I didn’t take the first appointment he offered me. I think I took an appointment about a week or two later. Early on the morning of June 15, 2004, a great crew prepped me. Dr. Thomas and his team went to work on me and by early afternoon I was in a hospital bed. I stayed over night and was home by the next afternoon. I followed the pain medication regimen for a short while after the procedure. I received immediate relief during my menstrual cycles. I had a new life by my 41st birthday! I have been to two follow-ups with Dr. Thomas since the procedure – one at three months and one in July. They were both very positive. My fibroids are no longer viable. I was supposed to go to the one-year follow up in June. But, lo and behold, I became a mother in June and spent that month with my adorable daughter! Between my first follow up and my daughter I joined a local gym in February 2005 and lost 25 lbs. I’ve attached pictures of me in April 2005 and July 2005 so you can see the results for yourself. Fibroids run in my family. My sister’s condition was never severe enough to warrant surgery. But, her two daughters and her niece who range in ages from 29-39 are plagued with recurring and debilitating discomfort. While talking with my sister in early July I learned that my 37-year-old niece was about to have a hysterectomy in less than one week! I quickly explained my case and UFE to her. She opted for that course of action and had UFE on July 11th. Her 39-year-old cousin will have the procedure in December. We expect the 29 year old will follow soon after. I am extremely gratified that my nieces will know a better quality of life because of UFE. I have a new lease on life thanks to my husband’s persistence and Dr. Thomas’ expertise. Again, thank you, thank you, thank you, Dr. Thomas. (The first image is from April, the next from July)
MarciaBEFORE
UFE: I
had never heard of uterine fibroids until I was diagnosed with them in 1991
following several months of experiencing heavier and longer periods. I was in my
late thirties and remember being relieved with the diagnosis, thinking "no
big deal," at least it wasn't something more serious. Little did I know the
problems these non-cancerous tumors would cause – affecting my health and
lifestyle for the next nine years! Not
wanting a hysterectomy, in 1992 I opted for a myomectomy – surgical removal of
the fibroids. My gynecologist warned me they might grow back. He was right.
About five years after the myomectomy, my periods got heavy again, and more than
one doctor advised me that there was nothing left to do but get a hysterectomy.
I still wasn't ready for that, and decided to "just put up with it."
I
had heard about UFE - uterine fibroid embolization - on a national news program.
They interviewed women just like me, who were suffering from fibroids but who
wanted to avoid a hysterectomy at all costs.
UFE was touted as an alternative -- an operation where plastic particles
were inserted into the arteries that "feed" the fibroids. By blocking
the blood supply, the fibroids would starve and eventually shrink. Most
important to me was that the uterus would remain intact, and that UFE was a much
less invasive operation than a hysterectomy. By
1999, my situation was becoming intolerable. One fibroid was so big it started
pressing against my bladder - causing pain and frequent trips to the bathroom.
My periods could only be described as horrible -- very bloody and clotty --
lasting ten days and longer. I hadn't been to a gynecologist in more than a year
because I didn't want to be told again that I should have a hysterectomy. I made
an appointment with my primary doctor who checked me for anemia after I told her
about my heavy periods. The test results were so alarming -- she wanted to
hospitalize me immediately and give me a blood transfusion! I didn't realize how
serious the situation had become. My
hemoglobin was 5.7 when it should have been between 12.0 and 15.6. My hematocrit
level was 18.9. Both levels were
less than half what they should have been. I avoided hospitalization by taking
iron supplements, but because I was still bleeding so heavily, improvement was
slow in coming. I was tired all the time and I could no longer take my daily
walks. No longer were the fibroids effecting my periods -- now they were
effecting my overall health. After
nine years, I could not put up with this any longer. I
found out that UFE was being performed at Methodist hospital in San Antonio. I
contacted Methodist and was put in touch with Dr. John Thomas. UFE
and AFTER: Dr.
Thomas and Dr. William Shea were very patient in explaining UFE to me through
e-mails, phone calls and a visit to the Methodist radiology
department. They studied my pelvic ultrasound and MRI told me I was a good
candidate for the procedure. They explained to me again how it worked: small
particles would be inserted by catheter into the arteries that feed the
fibroids. The particles would cause a blockage, meaning blood could not get to
the fibroids. Once the blood flow was cut off, the fibroids would begin
"dying." I
learned that the procedure would take less than an hour, which was good news. I
was also very happy to learn I could remain awake during the operation. I could
choose between conscious sedation and epidural anesthesia, which is what some
women get during labor and delivery. Dr.
Thomas said I would probably feel pain from the procedure – although the
amount of pain varied widely from woman to woman. Of course, I had numerous
questions: Would the particles stay where they were supposed to? Would the
fibroids eventually disappear? Would I still have periods? Could I still become
pregnant? What was the long-term prognosis? All
the questions were answered to my satisfaction and I decided to go ahead with
UFE. Once I made the decision, I called Dr. Thomas was able to schedule the
procedure that same week. Everything
went very much how it was described to me. Before the operation, a blood test
was done, an IV was inserted, a urinary catheter inserted, and Dr. Thomas came
into the prep room and talked to me to make sure all my questions were answered.
I was put on a stretcher and wheeled to the large room where the procedure would
be performed. By
the time things got underway I was sufficiently sedated, so my
recollection of the event is rather fuzzy. I had been placed on a table next to
some type of monitor or screen, I could hear people talking, someone
began inserting a catheter into my upper right leg,
someone asked how I was doing. I
was very relaxed and felt no pain during the procedure. I
had been told that toward the end of the procedure I might begin feeling
discomfort, which I did. I was told not to move my right leg as the catheter was
taken out, and to keep the leg still afterwards. The pain increased, I remember
telling someone that if they didn't want me to move my leg they better give me
more drugs! Thinking
back, the pain was no worse that bad menstrual cramps -- still I was rather
uncomfortable as they slid me to another stretcher and wheeled me up to my room. I'm
not one to tolerate any amount of discomfort if I don't have to, so that first
day I used my pain pump liberally (I was assured there was no
way to accidentally overdose myself.) My temperature
and blood pressure were taken periodically; I slept the rest of the day and
didn't feel like eating. By
the next morning the pain was under control with medication. I guess I
experienced a reaction to the medicine because I threw up three times. Because
of that -- and because I still had a fever -- it was decided that I would stay
in the hospital another night. The
following morning I was feeling much better. I was anxious to go home and was
discharged that afternoon. I was given a prescription for pain medicine and told
the slight fever I still had was to be expected. Dr.
Thomas had said some women are ready to return to work by the fourth day -- but
that wasn't the case with me, mainly because my fever lingered for another four
or five days, and I was weak from being so anemic. I had slight abdominal pain,
but nothing that couldn't be controlled by medication. I was able to drive, but
most of the time I stayed home and read or watched television. A week after the
procedure, I went to the mall -- a good sign that I was getting back to normal!
After
returning to work, I experienced a general weakness in my right leg, and
numbness in the toes. Dr. Thomas thought a nerve may have been bruised during
the procedure and that the weakness would be temporary. It lasted about ten days
and then went away completely. In
the two months since the UFE was performed, my bleeding has stopped. My iron
level is rising steadily. Hemoglobin is up to 7. Hematocrit is at 24. I have so
much more energy. I haven't had a period, but I'm not worried because physically
I feel so much better. I can already feel that the fibroids have gotten smaller.
Dr. Thomas says they'll keep shrinking and will eventually become scar tissue. All
in all, I am very happy with the outcome of UFE. Life is better now that I'm not
incapacitated every month by horrible bleeding episodes. My iron levels continue
to improve, my strength is coming back -- all this and I didn't have to undergo
a hysterectomy! I feel lucky that UFE was available to me. I'm sure I made the
right choice. Marcia
3 months after UFE Good news! Just received fax with the results of my blood work: hemoglobin 12.2 hematocrit 37.6 These values are normal.
JeanI’m
45 years old and have had a long history of uterine fibroid tumors.
I had my first myomectomy (surgical removal of the fibroids) at age 33, with a
second, identical surgery following at age 38. Both surgeries
required general anesthesia, several days in the hospital, and the recoveries
were quite painful, with an abdominal “bikini-line” incision, approximately
8 inches long. The recuperation time was a total of six weeks. Last
year’s annual check-up with my gynecologist again brought the news that the
fibroids had returned and were growing. An ultrasound confirmed
this. Since the fibroids were not particularly symptomatic at that time,
my gynecologist asked for me to return six months later, and we would take
another look at them. During that six months, the bleeding during my
periods increased significantly, and I began to notice a constant heaviness
(commonly referred to as “bulk” symptoms) in my lower pelvic region. Anticipating
the news I expected to hear from my gynecologist (most likely his suggesting a
hysterectomy), I began researching uterine fibroids on the Internet, to see if
there was anything new in the way of treating them. I was
intrigued by the information I found on a relatively new procedure called
Uterine Artery (Fibroid) Embolization, and was very pleased to see that it was
being performed in San Antonio by Dr. John Thomas with the South Texas Radiology
Group. As
I suspected, my gynecologist did recommend a hysterectomy.
It’s difficult to explain why I felt so adamantly opposed to a hysterectomy.
I guess the short answer is I didn’t see the necessity of such surgery when
fibroids were the only problem. I told him I wished to explore UFE.
I was very surprised to learn that none of his patients had ever undergone the
procedure – from my research, it seemed an innovative and sensible treatment
for fibroids. The
next week, I spoke with Dr. Thomas on the phone, and he very patiently answered
numerous questions I had about the procedure. I decided to meet with
him in person and grilled him with more questions. Satisfied
with his answers, and our both being comfortable that I was an appropriate
candidate for the procedure, we scheduled the UFE for the following week at
Methodist Hospital. Accompanied by my sister-in-law, I arrived at the hospital early in the morning, and after a brief check-in procedure at Radiology Registration, I was taken to be prepped for the UFE. Prepping included the standard medical history, drawing blood, and getting the all-important IV begun in my forearm, as well as getting the urinary catheter in place. The
nurses at Methodist were great - extremely capable, with senses of humor that
put one at ease. Check any sense of modesty at the door, and
you’ll be fine. It
was then time for the procedure, and just beforehand, a final ultrasound of the
uterus was done to have a baseline for future reference.
I won’t go into the specifics of the UFE procedure, (which you can read
elsewhere) other than it was painless for me. I felt very conscious
and alert the entire time - so much so, that I kept asking for more
sedation, not realizing until I spoke (and heard my slurred speech) that I had
plenty already. After
the procedure was completed, I was wheeled back to the same room where I had
been prepped, and for the next hour or two experienced what I would term as
moderate cramping. The self-administered morphine-drip was hooked
up, and my thumb started punching the button. The nausea also began
about then, and I experienced a brief episode of sweating, an apparent isolated
“hot flash” caused by the sudden release of estrogen into my system from the
embolization. I have had no recurrence of such an event. I
spent the afternoon in my hospital room, lying flat on my back, visiting with my
sister-in-law, and punching my button (more so in anticipation of pain, than in
response to it.) Realistically, I would rate my pain as only
slight to moderate. I never ran any fever. The nausea
continued until the next morning, and because of the nausea, I was on a clear
diet the rest of the day and night (think of food you can see through – broth,
Jell-O, and tea). The next morning, my IV and urinary catheter
were removed, and I was finally able to get out of bed and take a shower.
I honestly felt great (maybe a little hungry), and was released from the
hospital as soon as I proved I could keep solid food down. Success
with lunch! There
was absolutely no problem with climbing stairs the day after the procedure, and
living alone, I had no problem taking care of myself – preparing meals and
such. The level of pain never exceeded “slight”, and I was proud
that I never felt the need to open the heavy-duty pain medication which had been
prescribed. After two days, I felt good enough to drive and run
short errands, and less than a week after the procedure, I was enjoying my
favorite hobby, gardening, and lugging heavy bags of soil. It’s
now three weeks after the procedure - my period I just had was pretty much back
to normal, but was accompanied by some minor cramping for a few days.
The nurse from Methodist called me a couple of times to see how I was doing, and
I kept on reiterating to her how great I felt. Comparing the
UFE to what I had gone through with the myomectomies, this had been a walk in
the park. I realize each experience with UFE is unique, and time will be the final judge on how effective it was. However, for me, I think of the alternative I was facing, and am very happy to have discovered this option. Jean.
For more information, please contact me by e-mail or by phone 210.575.4343. Or visit the Society of Interventional Radiology's www site and follow the links about UFE.
We subscribe to the
HONcode principlesof the Health On the Net Foundation
This page was last updated onFriday, December 15, 2006 Comments about this site webmaster@drjohnthomas.com
For most of my patients the only medical problems they have are those that are caused by their fibroids. This is good and bad; bad because fibroids can cause a confusing array of symptoms, good because all of those problems go away after UFE, and you return to excellent health.
To my knowledge, this is the first instance of restless legs syndrome cured by UFE. At 6 months after the procedure Lori still has not had another attack of restless legs. Perhaps her enlarged uterus was putting pressure on the nerves to her legs, and that manifested as restless legs syndrome. Or maybe it was her severe anemia from the excessive blood loss.
A hemoglobin of only 4 frightens everyone; indeed, it is referred to as a "panic value". And it caused panic, I can assure you. I got so many phone calls the day of Lori's procedure from concerned nurses and technologists making sure I knew the value was only 4 (normal is 12-16). Even though I knew Lori's value and why it was so low, I was happy to get all of those phone calls. They assured me that Methodist is a safe environment for my patients; that something potentially harmful or life threatening would not go unnoticed. I wish I could say the same for all hospitals in San Antonio.
Congratulation's Jamie! But to prevent confusion, let me make sure our readers understand that your beautiful new baby was adopted and not the result of a successful pregnancy following UFE.
A visit to me used to mean coming into the radiology department. But on April 11 2005 we open our clinic, the Interventional Radiology Clinic of STRG (the IRC). Now we hold regular clinic hours in the way you are used to with other types of doctors. To make an appointment call 210.616.7780. The IRC web site is www.ircst.com
This was me. The entire procedure is performed by myself or one of my partners, with the exception of holding pressure on the puncture site at the end of the UFE. That is done by one of our capable staff. And I am in the room while that is happening, taking care of your orders and chart work.
True. The pump is set to give you a maximum safe dose over a set time period regardless of how many times you punch the button. We encourage you to use this medicine liberally during the first 12 hours after UFE. Most of our patients are ready to try to switch over to oral pain medicine after 12 to 15 hours. If the medicine is insufficient to control your pain, we have a backup plan in place that allows the nurse to give you additional medicine.
Myomectomy removes the fibroids that are accessible, but leaves the inaccessible and small fibroids behind. That is why 33% of women will suffer recurrent symptoms from fibroids after myomectomy. UFE, on the other hand, treats the entire uterus at once, killing all existing fibroids regardless of position or size. Since UFE just got started in 1995, we still do not have real long term data (10 and 20 years) but so far the recurrence rate is no greater than 4%.
The first UFE in the United States was performed in 1996. As of May, 2001, approximately 10,000 women had undergone UFE in the U.S. Less than 50 of them here in the San Antonio area. Over the same time 3,000,000 women in the U.S. had hysterectomies; 1,000,000 of them for fibroids. Now, in 2005, most gynecologists in San Antonio know about UFE, and several refer patients to me regularly.
After the embolization, the dying cells of the fibroids could potentially release estrogen, as these cells have estrogen bound to them or contained within them. Jean's hot flash, however, was more likely in response to some other agent released by the dying cells or by the uterus itself and is part of what is called "post-embolization syndrome" (PES). Patients usually feel fatigue, some pain and nausea, and run a low grade fever. But other reactions can be seen, depending on the make-up of the embolized cells. A sudden release of estrogen would actually likely prevent a hot flash rather than cause one. So I am unsure as to what caused this temporary response. PES is self-limited, lasting several hours to days, rarely as long as two weeks. Symptoms typically improve gradually, with the worst occurring in the first 12 hours. It is one reason we keep women in the hospital overnight after UFE; so we can provide you with appropriate symptomatic relief. Some patients do not experience PES at all.
|
