There’s Hope In Front Of Me

Does everyone with a chronic illness feel like they’re drowning in medical appointments or is it just me?

Lately, it feels as if they’re never-ending…

Take this last week, for example – I had 6 medical appointments. The week before, I had 6 appointments as well. This upcoming week, I have 5 scheduled. I originally had 7 but I was released from physical therapy on Friday (long story, which I’ll update at another time). All  of April was pretty much the same thing and the rest of May isn’t looking that much better. Honestly, I’m so exhausted from trying to manage all of these appointments and there is barely  time to think, let alone do, much of anything else (e.g. school work). It feels like I’m never going to get a break at this point – and it’s really not helping my symptoms either. The only good part is that we’re finally starting to make some progress.

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I have a few new diagnoses and some possible new treatment options to look forward to, including the possibility of a few surgeries. Although I was skeptical at first, 2016 does seem to be my year after all – it just got off to a slow start I guess. If nothing else, all of this forward motion has given me hope once again.

Hope In Front Of Me

By Danny Gokey

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a hope still burning
I can feel it rising through the night
And my world’s still turning
I can feel your love here by my side
You’re my hope
You’re the light, I still see it
Your hands are holding me
Even when I don’t believe it
I’ve got to believe
I still have hope
You are my hope

Review of Bill Meyer’s – Healing and the Mind: Healing From Within

If you haven’t had a chance to watch any of Bill Meyer’s films about chronic illness, I definitely recommend doing so. Although many of them are older, they are helpful in gaining insight into chronic illness and ways to improve your quality of life following diagnosis. In my health psychology class last semester, I was fortunate enough to be introduced to his film Healing and the Mind: Healing from Within.


<p><a href=”https://vimeo.com/39767361″>Healing and the Mind – Healing from Within</a> from <a href=”https://vimeo.com/moyersandcompany”>BillMoyers.com</a&gt; on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

In general, society expects chronic or terminal illness patients to remain strong in spite of their condition. The media alone has set an excessively high standard for those who are sick by portraying illness a challenge that can easily be overcome. For example, there are numerous stories in the news about a cancer patient that accomplished something extraordinary and everyone deems them a hero for overcoming the obstacles of their disease. However, you don’t typically see stories of the patients who spend weeks or months in the hospital, undergoing painful medical procedures or chemotherapy.  You also don’t hear of the millions of patients still waiting for a diagnosis for this condition – which in my case, took over 20 years. As I mentioned earlier, there’s a shocking reality that follows chronic illness. As the Moyers (1999) mentions, “despite all the powerful weapons of modern medicine, many patients can’t be helped. Frustrated doctors are beginning to turn to alternatives” (Opening Scene).

According to the Centers for Disease Control and Prevention (CDC), nearly half of all adult (or 177 million people) are diagnosed with at least one chronic condition, with one out of every four of these patients diagnosed with two or more chronic illnesses or diseases, and account for nearly 48 percent of deaths in the United States. Unfortunately, many of these deaths are the result of suicide.  Recent reports on chronic illness have found that depression is approximately 20% higher in those who are chronically ill, while “physical illness and uncontrollable physical pain are major factors in up to 70% of suicides” (Copen, 2016). Just as horrifying is the fact that chronic illness could happen to anyone at any time, despite taking cautions by practicing health behaviors. Essentially, chronic illness is a community – a community that doesn’t discriminate against its population and that any person can be forced into at any given time, often without prior consent. A popular saying within the chronic illness community is that “you don’t know until you know,” and that’s the truth. Nothing prepares you for the challenges of living with a chronic illness, both physically and emotionally.

It drives away social connections, with both family and friends alike, and you lose the connectedness you once had in the world. Chronic illness literally touches every part of your life and, ultimately, it changes who you are – who you think you should be. A serious diagnosis instantly can dissolve one’s hopes or dreams and any plans that they had for the future. It becomes impossible to simply plan for tomorrow because there is often little to no predictability when it comes to illness. Additionally, the experience of chronic illness is yours alone – leaving you to feel frightened and isolated, angry or depressed, and guilty for not doing more or being more. A patient in the film Healing and the Mind described it best by saying, “I just see things getting stripped away from all of us a lot of times. One thing after the other stripped away. Stripped away, stripped away. And then who or what is left?” (Moyers, 1999, Introduction to Dr. Spiegel’s New Experiment Scene). As a chronic illness patient myself, I can firmly attest to this reality. Somedays it’s hard not give up when you’re sick all the time because you’re constantly battling between both your body and your mind. It’s hard not to get discouraged, especially when your told there’s likely little hope for getting better – no pill to take the pain away, no doctor to stitch you back together. When clinical intervention is no longer an option, patients look for other ways to manage their condition.

Learning to adjust one’s life around chronic illness is often a major challenge following diagnosis and as Moyers (1999) mentions in his film, chronic illness patients are suffering; they’re looking for ways to manage the stress associated with their illness by regaining control once again. For instance, the first half of Healing and the Mind begins by reviewing a program initiated by Dr. Kabat-Zinns, which treats individuals diagnosed with a serious physical illness or disease through the use of mindfulness and meditation exercise. In an interview regarding the program, a colleague points out that Dr. Kabat-Zinn is well respected by most doctors in the hospital for his work in managing the psychological aspects of illness. Not just because his methods have proven to work, but mainly because Dr. Kabat-Zinn takes on the toughest patients that clinical medicine couldn’t help and teaches them to live with the pain. The most profound moment for me, however, was the scene where the doctor was teaching yoga and was explaining how to let go of feelings of stress or pain:

And you feel the pain. Then you just see… see if I can ride the waves of this sensation. And you watch the sensations come and go, and very often they will change. Noticing that you can uncouple the sensation from your thoughts about them. Like, this is killing me, it’s going to last forever, there’s nothing I’ll be able to do about it. And you learn to free yourself from those thoughts and realize those are just thoughts. And then it turns out there is an inner stillness and peace right within some of the most difficult life situations. If you can learn to be comfortable within the pain or within the anxiety, it’s going to change it completely. You’re not trying to make it go away…

What we’re doing is saying, actually move into the stress and begin to look at, look at the pain, look at what the mind’s reactions are. And you’re asking, ‘is this killing me right now, in this moment, is this killing me?’ The answer is very often, ‘No, it’s not, but my GOD if I have to live with this for 30 years…’ And then you say, ‘But wait a minute, the idea is just to be in the present moment, let’s just flow with this.’ And over a period of time, people learn to actually relate differently to the pain. (Moyers, 1999, Yoga Scene).

There’s no denying that the way we think or feel can greatly influence the physiological aspects of health. However, the amount of social support a person receives (or doesn’t receive) is also a determining factor in how one copes with chronic illness, especially in terms of quality of life. According to Gurung (2014), “empirical studies and reviews show that people with more social support have a more positive adjustment to chronic illness… Having a socially supportive environment often makes the patient more actively cope with the illness and less likely to disengage and get worse” (p. 316). While having a strong personal network of family or friends is important, and sometimes necessary for basic survival, many patients will turn to group support in order to better manage their condition.

Patients can benefit from support groups for a number of reasons. For starters, supports groups are designed to bring those with similar issues, such as chronic illness, together as a way to bond and share experiences. It’s a safe place where individuals don’t have to hide how they honestly feel. For example, [in talking about on his participant in the study on support groups] Spiegel states that “it’s interesting in reflecting back on how she [the patient] presented at the first meeting with this extremely extensive and well-developed support network that despite having all those people [the patient’s support group], there were things that she felt she couldn’t share with them, but started right off sharing in the group” (Moyers, 1999, Support Group Meeting Scene). Sometimes it’s easier to discuss illness with those who understand what you’re going through. Other times, it’s just hard to tell the people that you love that you’re scared, depressed, or in pain. Individuals affected by chronic illness typically feel guilty about their condition, or that they even became sick in the first place, and they don’t want to be a burden to their family or friends. As one patient’s studied in the film stated, “I think we put on a big front for the people around us” (Moyers, 1999). Likewise, these patients can also feel that it is necessary to hide the signs of their illness to avoid the discrimination that’s become common in modern society, which views chronic illness as a form of weakness. Ultimately, it’s easier to find comfort in those you know won’t judge you for your condition.

Aside from the above, there are other benefits from finding support from a group, many of which were shown throughout the film. For example, one of the main types of social support comes from gaining informational support. Belonging to a support group provides a place to share or gain information about a particular condition or disease, such as sharing personal experiences, discussing treatment options, and exchanging tips or trick that may help to alleviate symptoms. Also, it helps to see what others are going through or to know that you aren’t the only one who has gone through this experience. Likewise, meeting others like you can often put things into perspective. For instance, if others appear to be worse off than you, it makes you be thankful for your situation. Alternately, if they have achieved recovery or appear to be doing better than you, it can give you hope that life won’t always be this way. It can also help in bringing understanding for setting expectations for the future in terms of living with chronic illness. More importantly, though, support groups create a group dynamic based on a common history. Being part of a group provides inclusion to something bigger and more profound; something outside of the self. It allows for a sense of belonging to the human race once again (Moyers, 1999).

One of the scariest parts of being sick is not knowing what is going to happen in the future. It’s also hard to explain how someone could feel alone with their illness, despite having a number of friends and family in their life. More times than not, individuals with a chronic illness feel segregated because of their illness or feel pressure to do more because of the pressure placed on them to live a normal life in spite of their conditions. Although family and friends are an essential element of one’s ability to cope with chronic illness, as you mentioned they can also create further problems or distress handing disease. Similarly, individuals who do not have a strong support network can also struggle to cope on their own, which makes access to support groups crucial to physiological and psychological well-being following a diagnosis of chronic or terminal illness.

There is a grieving process that coincides with illness, although this is a crucial part of coping with a chronic or terminal disease.  According to Absenger (2015), grief in terms of illness is defined as “the primary emotional/affective process of reacting to the loss of a loved one or loss of quality of life due to chronic illness. Grief reactions can also be viewed as abnormal, traumatic, pathologic, or complicated” (para. 9). The grieving process for chronic illness is similar as it is for those who are bereaving over a loved one, consisting of 5 Stages of Grief in Illness:

  1. Shock and Denial: When an individual first receives a diagnosis, they often go into a state of shock or numbness, unable to process what the doctor has said. As Absenger (2015) mentions, patients experience a “subjective sense of numbness, detachment, or absence of emotional responsiveness” (para. 15). Likewise, you try to avoid coping with the reality of a diagnosis by simply ignoring the problem.
    • This isn’t really happening to me.”
    • “The doctors must be wrong; I am not sick.”
    • “I’m fine, everything is fine.”
  2. Anger: When a person can no longer deny the inevitable, one can often feel anger or bitterness towards their illness.
    • “What did I do to deserve this?
    • Life is so unfair!”
    • “Why me?
    • “I am sick and tired of always being sick and tired!”
  3. Bargaining: They want to understand why this happened and become desperate to find a way to fix themselves. They believe if they make deals that they alter the outcome of their illness.
    • “God, if you make this go away, I promise to…”
    • “I’m willing to try anything to feel better.”
    • “I should get a second opinion. Maybe they will tell me something different.”
  4. Depression: When bargaining doesn’t work, sadness begins.
    • “My life isn’t worth living.”
    • “I don’t know who I am anymore.”
    • “How am going to afford to live?
    • “I won’t ever be able to afford these medical bills.”
    • “What’s going to happen to me?”
    • “I can’t do this anymore… I give up!”
  5. Acceptance: This is the most important stage in illness because patients are able to live with their condition. According to Absenger (2015), “learning new coping skills will help you not only to learn and accept the losses and limitations of chronic disease but also allow you to transform your experience into something livable and bearable” (para. 23).
    • “I can cope with whatever life throws at me.”
    • “I will try to live the best life that I can.”
    • “No matter what happens, I’ll be okay.”

When you’re going through the stages of grief, it almost feels silly or selfish to mourn the loss of yourself. Ultimately, though, it may be the only way to get over the heartbreak of diagnosis and prepare oneself to cope with illness or disease.

As we saw throughout the film Healing and the Mind, learning to adapt and accept the pain of illness is essential in both healing and regaining control of life. As Dr. Jon Kabat-Zinn mentions during a group discussion on mindfulness, “if you hope to really grow in strength and wisdom, and bring healing into your life, you have to come to the realization that this moment is precious. And not only precious, but it’s wonderful, even if you’re in pain at this moment. Now that takes a certain amount of courage to do” (Moyers, 1999, Group Discussion on Mindfulness Scene).

References

Absenger, W. (2015). Mindfulness and the Stages of Grief in Chronic Disease. Retrieved on February 23, 2016, from http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/

Centers for Disease Control and Prevention (2016). Chronic Diseases: The Leading Causes of Death and Disability in the United States. Retrieved on February 22, 2016, from http://www.cdc.gov/chronicdisease/overview/

Copen, L. (2016). Information and Statistics About Invisible Illnesses and Visible Diseases. Retrieved on February 22, 2016, from http://invisibleillnessweek.com/media-toolkit/statistics/

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

Moyers, B. (1999). Healing and the Mind – Healing from Within . Retrieved from http://vimeo.com/39767361

Life After Venography

Recovery from the venogram was much worse than I expected. Originally, they told me I’d be in pain for the next 48 hours and then I’d be fine, but put me on restrictions for 7 days. I guess I didn’t realize how much you actually use your neck, as I could barely move at all for the entire week following. All I could do was sleep. The day after the procedure, I started coughing up blood, as well as blowing it out my nose, and my pelvis hurt more than it had even before the procedure. I also couldn’t see clearly either. It was as if my normal vision (even with glasses) suddenly changed overnight. Worried, I called the hospital, but the on call doctor thought my symptoms were unrelated to the venogram. Just weird they started the morning AFTER the venogram. Not long after I get off the phone with him, the hospital calls back letting me know that I have an appointment for a follow-up in two days (which I didn’t make – I was told to call to schedule). At that point, it was now the weekend, so I called bright and early that Monday morning to reschedule, since I was already scheduled with cardiology (at a different hospital) at the same time.

When I go to the follow-up a week later, the receptionist checking me in tells me that they’ll be calling me shortly for my ultrasound. Confused, I questioned her about it and she said, “Oh, never mind. It is an appointment, but there is no doctor written on the schedule…how odd!Um, okay… that doesn’t sound good, but she doesn’t act concerned so we (my husband and me) take a seat in the waiting room and actually get called back to the exam room rather quickly – I think it was in less than 5 minutes from sitting down. After the nurse does her thing, she says it’ll be just a few minutes until the doctor comes in. After an hour goes by of us waiting in the exam room, the nurse finally comes back in to check up on us, saying that she just realized that it had been just over an hour since we checked in and that the doctor was scheduled for surgery at the time of the appointment… but he should be almost done. About 10 to 15 minutes later, a doctor that looks familiar, but is not MY doctor, walks into the room.

He introduces himself and says he will be helping Dr. J with my surgery and that he assisted with my venogram. Okay, so that’s why he looked familiar. He proceeds to go over the findings of the test by drawing me a picture and telling me, in the most basic way possible, that I have Nutcracker Syndrome. Um, yes, I know. It’s already been confirmed multiple times by multiple doctors. I don’t think he knew anything about me, really. This became more apparent when he then tells me to they want to do surgery to stop my hematuria – only I don’t have hematuria as a symptom and I haven’t since I was in my teens and early 20’s. He seems confused by this and asks me what, exactly, are my symptoms.

I tell him the list (ULQ abdominal pain that can also radiate to the right or pelvic region on both sides, constant nausea, dysphagia, pain after eating, alternating diarrhea/constipation, rectal bleeding with or without mucus or undigested food in stool, dizziness, syncope/pre-syncope, occipital neuralgia, skin rashes, burning sensation under skin, insomnia, sleep apnea, chest pain, asthma/allergies/anaphylaxis, olfactory hallucinations, hair loss, incoordination/balance issues, severe fatigue, heart palpitations, arthralgia and myalgia, muscle and eye twitching, livedo reticularis, nevus anemicus, random swelling of my lymph nodes, and abnormal menstrual cycle before endometrial ablation). I also tell him my current diagnoses aside from the NCS (SMAS, MTS, IBS, Hypoxemia, POTS, Pericardial Effusion, Ventricular and Sinus Tachycardia, Cardiomyopathy, Alopecia, SIBO, and some underlying autoimmune/infiltrative disease that is tricky to diagnose, but the doctors are fighting about it being lupus or not). Maybe it was the number of symptoms/syndromes I named off, I don’t know, but he just kind of brushed it all off since none of it fit with the Nutcracker diagnosis.

Instead, he moved on with the conversation by showing me where all the collaterals are forming (where the body develops new blood circulation pathways to flow through since my renal vein is essentially blocked) and we watch some video from the venogram.

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Photo retrieved from Dr. Scholbach’s Website, 2015

Basically, a lot of my blood is flowing into my lumbar plexus and pelvis, causing the pelvic congestion syndrome.

Pelvic-Congestion-Illustration-1024x509

Photo retrieved from RIA Endovascular Website, 2015.

The blood that is making it through the renal vein is then going up into the hemiazygous vein.

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The rest of the blood, however, is flowing retrograde toward the IVC, and the doctor says that it’s not likely May-Thurner Syndrome but the retrograde flow instead (although, again, Dr. J said I absolutely had MTS based off my CT Angiography, which we watched together during my consult as well).

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Retrieved from the University of the Cumberlands website, 2015

This doctor then tells me that I have two options to fix the Nutcracker Syndrome; a stent (which I interrupt him and tell him that’s not an option) or the LRV transposition surgery, which they believe, due to my age, would be the best option. I ask him about the SMA Syndrome, which Dr. J said I had based on the CTA as well, but this doctor tells me there’s no way I have that. I tell him that GI surgeon confirmed the angle for SMAS and wrote it down as a diagnosis in my chart, but said he wouldn’t treat it without other proof.

nutcracker

Retrieved from Dr. Sathaye’s Blog, 2015

Basically, this doctor says that since I have no confirmed blockage they won’t treat it and that they can only treat what they have confirmed – the Nutcracker Syndrome and the Pelvic Congestion Syndrome (they plan to “tie off the vein” where it goes into the pelvis). Great…

We go over the surgery, recovery, etc.  My husband asks him if surgery will treat any of my primary symptoms. He basically stutters, saying there’s no way to know if it’ll help at all, but it may decrease any flank pain, hematuria (which, again, I don’t have) or pelvic pain caused by the PVCS, and that it has to be done. “So none of her primary symptoms?” – “Not likely”. I ask him if this could be causing any of the problems with my heart or the POTS. “Not likely influencing any of that either. I don’t suspect that this surgery will help those problems, but you never know.” We basically end the conversation there.

As the nurse is getting us checked out she says, “For someone with as many symptoms as you, you look really good.”  Excuse me?

I-dont-look-sick

After 20 years of pain and no diagnosis, you learn to hide it pretty well…

 “We have another patient with all the same things as you and she doesn’t look well at all….She is horribly skinny and sick.

Wow.

I didn’t know how to respond to that, so I just said,

“Well I keep my weight up by drinking 1 or 2

high-calorie Starbuck’s drinks a day.

Starbucks?

She doesn’t understand how that’s even possible.

“It’s 500 to 600 calories a drink. Keeps my weight up

and is the reason why I don’t ‘look sick’.”

She’s in shock.

You mean, you don’t eat food?

No… I CAN’T eat food.”

She’s speechless for a moment and then tells me that the doctor’s scheduler will call me to set up a surgery date, before walking us out. Before we left, though, she was nice enough to print out my venogram results so I didn’t have to wait for medical records to send them out by mail.

So, after all of this, I’m at a loss about what I should do.

Primarily, the biggest concern is having a major surgery without fixing my primary complaints first– you know, the ones that have taken away my ability to work and live a normal day-to-day life.

My husband doesn’t want me to have it done because he knows I can’t handle any additional pain on top of what I already have going on (that surgery won’t fix) and he doesn’t think it would be worth it. He also doesn’t trust the hospital, as I do after this whole affair. When the hospital called to schedule a few days later, I told them I would have to call back after I’ve gotten my affairs in order, talked with my other doctors and moved some appointments around, and talked with my school about taking at least one semester off. I also plan to call around to some other doctors out of state to see if they can review my tests, as well as my other doctors, although I obviously didn’t tell them that.

When I called my cardiologist to see if he had any objections or concerns I should be aware of about surgery, he recommended that I wait until my cardiology testing is done because he can’t guarantee I’d be okay with such an intensive surgery or recovery. Still, I need some opinions or input as to how to move forward once I am cleared for surgery. I don’t want to be noncompliant, but this is an invasive surgery and I want to make sure that I don’t do anything to make myself worse or choose the wrong thing. So far, this is one of the biggest medical decisions I’ve had to make.

Nonetheless, I’m losing hope that I’ll ever feel better as it seems to only be getting worse over time, and honestly don’t know what to do about anything anymore. I was so ill last week that I lost 8 pounds in three days from not being able to consume coffee (or food, obviously), but I am running out of tests that can prove the SMA Syndrome in a way that they would accept in order to treat it.

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So what do you think?

Should I move forward with surgery at this location after how they’ve handled everything else?

Is it even worth having the LRV Transposition if it won’t likely help any of my primary symptoms?

 

 

Catheter Venography (Venogram)

Well, I finally went for my venogram yesterday after waiting since September and being told by the GI surgeon to keep searching for answers to my symptoms. The vascular surgeon agreed to evaluate the compressions again  and determine whether or not surgery is needed at this point to fix the identified  vascular compressions.

According to the test results…. the answer is a clear and definitive yes.


(The following information was retrieved from radiology info.org.)

What is a venogram?

A venogram is an x-ray test that involves injecting x-ray contrast material (dye) into a vein to shows how blood flows through your veins. This allows a physician to determine the condition of your veins.

An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging.

A venogram is commonly used to:
  • assess the status of a vein or system of veins
  • find blood clots within the veins
  • assess varicose veins before surgery
  • find a vein in good condition to use for a bypass procedure or dialysis access
  • help a physician place an IV or a medical device, such as a stent, in a vein
  • guide treatment of diseased veins.

How should I prepare?

Other than medications, you may be instructed to not eat or drink anything for several hours before your procedure. You may be allowed to drink clear liquids on the day of your procedure.

You should inform your physician of any medications being taken and if there are any allergies, especially to iodinated contrast materials. Also, inform your doctor about recent illnesses or other medical conditions.

Women should always inform their physician and x-ray technologist if there is any possibility that they are pregnant. Many imaging tests are not performed during pregnancy so as not to expose the fetus to radiation. If an x-ray is necessary, precautions will be taken to minimize radiation exposure to the baby. See the Safety page for more information about pregnancy and x-rays.

What does the equipment look like?

350px-Herzkatheterlabor_modern

The equipment typically used for this examination consists of a radiographic table, one or two x-ray tubes and a television-like monitor that is located in the examining room. Fluoroscopy, which converts x-rays into video images, is used to watch and guide the progress of the procedure. The video is produced by the x-ray machine and a detector that is suspended over a table on which the patient lies.

Other equipment that may be used during the procedure includes an intravenous line (IV), ultrasound machine and devices that monitor your heart beat and blood pressure.

How does the procedure work?

X-rays are a form of radiation like light or radio waves. X-rays pass through most objects, including the body. Once it is carefully aimed at the part of the body being examined, an x-ray machine produces a small burst of radiation that passes through the body, recording an image on photographic film or a special detector.

Different parts of the body absorb the x-rays in varying degrees. Dense bone absorbs much of the radiation while soft tissue, such as muscle, fat and organs, allow more of the x-rays to pass through them. As a result, bones appear white on the x-ray, soft tissue shows up in shades of gray and air appears black.

Veins cannot be seen on an x-ray; therefore, a special dye (called contrast material) is injected into veins to make them visible on the x-ray.

How is the procedure performed?

This examination is usually done on an outpatient basis.

A venogram is done in a hospital x-ray department.

A venogram is performed in the x-ray department or in an interventional radiology suite, sometimes called special procedures suite.

You will lie on an x-ray table. Depending on the body part being examined (e.g., the legs), the table may be situated to a standing position. If the table is repositioned during the procedure, you will be secured with safety straps.

The physician will insert a needle or catheter into a vein to inject the contrast agent. Where that needle is placed depends upon the area of your body where the veins are being evaluated. As the contrast material flows through the veins being examined, several x-rays are taken. You may be moved into different positions so that the x-rays can take pictures of your veins at different angles.

What will I experience during and after the procedure?

You may be asked to remove some or all of your clothes and to wear a gown during the exam. You may also be asked to remove jewelry, removable dental appliances, eye glasses and any metal objects or clothing that might interfere with the x-ray images.

You will feel a slight pin prick when the needle is inserted into your vein for the intravenous line (IV) and when the local anesthetic is injected. The arteries have no sensation. Most of the sensation is at the skin incision site which is numbed using local anesthetic.

As the contrast material passes through your body, you may get a warm feeling.

You may have a metallic taste in your mouth. Your arm or leg may feel like it is getting numb or “falling asleep.” After the test is complete, this feeling will go away.

You must hold very still and may be asked to keep from breathing for a few seconds while the x-ray picture is taken to reduce the possibility of a blurred image. The technologist will walk behind a wall or into the next room to activate the x-ray machine.

When the examination is complete, you may be asked to wait until the radiologist determines that all the necessary images have been obtained.

A venogram takes between 30 and 90 minutes to perform. Fluids will be run through your IV to remove the contrast material from your veins. You will also be instructed to drink a lot of fluids for the next day. After the catheter is removed, a bandage will be placed on the IV site. Then you will be observed for any signs of complications, such as bleeding from the injection site, infection or an allergic reaction.

What are some of the possible risks?

  • There is a very slight risk of an allergic reaction if contrast material is injected.
  • In rare cases, a venogram can cause a deep vein thrombosis.
  • There is a risk of injury to the kidneys with contrast injection. Patients with impaired kidney (renal) function should be given special consideration before receiving iodine-based contrast materials by vein or artery. Such patients are at risk for developing contrast-induced nephropathy, in which the pre-existing kidney damage is worsened.
  • Any procedure that involves placement of a catheter inside a blood vessel carries certain risks. These risks include damage to the blood vessel, bruising or bleeding at the puncture site, and infection.
  • There is always a slight chance of cancer from excessive exposure to radiation. However, the benefit of an accurate diagnosis far outweighs the risk.
  • The effective radiation dose for this procedure varies.
  • Because children are more sensitive to radiation exposure than adults, equipment and procedures will be monitored in order to deliver the lowest possible dose to young patients.

What are the limitations of venography?

The results of a venogram can be altered or affected if you are unable to sit still during the procedure since that will affect how the contrast material moves through your veins. Further exams may also be required if the more central veins located in the pelvis, abdomen and chest are not fully evaluated with contrast injection via an IV placed in the extremity.

In some cases, ultrasound is a preferred procedure because it has fewer risks and side effects.


My personal Experience:

 I was so nervous about having the procedure because they hadn’t given me much information about it or the plan of action for the day. I finally received a call from the hospital on Monday with a check-in time and brief instructions about prep for the procedure. I was to check into the hospital at 6:30 AM Thursday morning and no food after midnight and drinks after 4:30 A.M. Not too bad, I thought.

Tuesday I had received three more phone calls from the hospital staff about doing pre-med prior to the procedure since the last three times I’ve had an iodine injection I got a blistering rash, almost like a sunburn, within a few hours of each procedure. This time around, I was to take 50mg of Prednisone 13 hours before, 7 hours before, and 1 hour before, in addition to 50mg of Benadryl an hour before the procedure started (in addition to all my normal meds – it was a lot of drugs in a short period of time, making me even more nauseated than my nerves had already caused me to feel).

Since we had such an early check-in time, in addition to living almost an hour and a half away from the hospital, we decided to get a hotel room down the street the night before. It was great not having to wake up at 3:30 A.M. to leave by 4:30-5:00 A.M. – making it so much less stressful of a morning. While I didn’t get a ton more sleep it was helpful to stay overnight regardless. We checked into the hotel around 7:30 P.M and didn’t have to worry about traffic or rushing to be there on time.

When we arrived at the hospital on Thursday morning, I was still pretty nervous since I did not know what to expect. There was a line to check-in and it left us a little behind. I signed all my paperwork and I believe I got called back around 6:50 A.M. Almost immediately, it was rush, rush, rush. I guess since I was having anesthesia because of a family history of malignant hyperthermia, instead of the traditional twilight sedation usually given during this test, I was scheduled for the operating room at 7:30 A.M. instead of 8:30 A.M. You could feel the pressure in my preparation room as everyone scurried around getting me situated to go. First they had me change out of every inch of clothes and put on a very fashionable hospital gown with neon yellow compression socks. I climbed into bed, praying I wouldn’t flash the large group of people who had now joined me in the hospital room. Luckily, I got covered in layers of warm blankets that covered me quite successfully.

Next, my room nurse quickly tried to put in my catheter, but could not feed the catheter into my vein – said my skin was too thick (which I had never heard)- and I began to swell and bruise almost instantly. The nurse then gave up and one of the medical student working on my paperwork decided to take a shot at it. He was able to get it in through the vein located on the side of my wrist on his first try, but he covered a whole side of the hospital bed and himself with my blood in the process. Quite messy but at least the catheter was in, right?

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The first IV catheter attempt

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The bruise is finally settling in

They both then drew my blood for a CBC and clotting times, followed by making me pee into a cup to make sure I wasn’t pregnant. Although I was VERY sure that I wasn’t, I know that it is typical protocol so I obliged and didn’t fuss about it – there wasn’t time to do so anyways.

Component Results

Component Standard Range Your Value
PREGNANCY TEST URINE Negative

COMPONENT RESULTS

Prothrombin Time 11.7-14.1 seconds 13.2
INTERNATIONAL NORMALIZED RATIO 0.9-1.1 1.0
The usual therapeutic range is 2.0-3.0.

High risk therapeutic range is 2.5-3.5.

 

Component Results

Component Standard Range Your Value
WHITE BLOOD CELL COUNT 4.0-11.1 10*9/L 9.2
RED BLOOD CELL COUNT 4.18-5.64 10*12/L 4.62
HEMOGLOBIN 12.1-16.3 g/dL 14.7
HEMATOCRIT 35.7-46.7 % 42.0
MEAN CORPUSCULAR VOLUME 80.0-100.0 fL 90.9
Mean Corpuscular Hemoglobin 27.5-35.1 pg 31.8
Mean Corpuscular Hemoglobin Concentration 32.0-36.0 g/dL 35.0
PLATELET COUNT 150-400 10*9/L 329
MEAN PLATELET VOLUME 9.6-12.8 fL 9.9
RED CELL DISTRIBUTION WIDTH CV 11.7-14.2 % 13.2
RED CELL DISTRIBUTION WIDTH SD 37.1-48.8 fL 43.2
Neutrophil % 91.5
LYMPHOCYTE PERCENTAGE 7.4
MONOCYTE PERCENT 0.9
EOSINOPHIL PERCENT 0.0
BASOPHIL PERCENT 0.1
IMMATURE GRANULOCYTE PERCENT 0.1
ABSOLUTE NEUTROPHILS 1.8-6.6 10*9/L 8.4
Lymphocyte Absolute 1.0-4.8 10*9/L 0.7
Monocytes Absolute 0.2-0.9 10*9/L 0.1
Absolute Eosinophils 0.0-0.4 10*9/L 0.0
Basophils Absolute 0.0-0.2 10*9/L 0.0
Immature Granulocytes Absolute 0.0-0.05 10*9/L 0.0
NRBC PERCENT 0 % 0.0
NRBC ABSOLUTE 0 10*9/L 0.00

After I got back in my bed, the anesthesiologist assistant came in to discuss what was planned as far as keeping me asleep. I’ve usually chatted with the anesthesiologist department days before the procedure but this time around I hadn’t and I was worried whether or not the hospital staff  could handle it – other hospitals had canceled on me in the past because of the complexity of the condition and the deadly consequences of Malignant Hyperthermia Reactions. She was very thorough in getting a detailed history on my case, pretty much assessing each one of my body systems. That in and of itself was refreshing, especially because I have a long history of complications and most doctors don’t take the time to look at the full picture as a whole. The main anesthesiologist came in during this time as well, very curious about my family history of malignant hyperthermia. Most hospitals have never seen a case, so the doctors are usually quite interesting in knowing the extent of the condition and who else in my family has it.  And again, he reiterated they’ll take caution to make sure nothing happens while I’m under through monitoring the entire time – I breathed a sigh of relief. 

Malignant hyperthermia (MH) is a potentially fatal, inherited disorder usually associated with the administration of certain general anesthetics and/or the drug succinylcholine.
The disorder is due to an acceleration of metabolism in 
skeletal muscle. The signs of MH include muscle rigidity, 
rapid heart rate, high body temperature, muscle breakdown andincreased acid content. Immediate treatment with the drug dantrolene usually reverses the signs of MH. The underlying 
defect is abnormally increased levels of cell calcium in the skeletal muscle.
There is mounting evidence that some patients will also 
develop MH with exercise and/or on exposure to hot 
environments. Without proper and prompt treatment with 
dantrolene sodium, mortality is extremely high. The best way to protect yourself, your family, your patients and facility,is to be prepared before it's too late. 
(Taken from http://www.mhaus.org/)

Originally they were planning to use Propofol, which I had used in the past and is quite safe for individuals with malignant hyperthermia, but my drugs somehow changed by the time I was back to the OR and I was given Versed instead. Thankfully, though, they gave me a number of anti-nausea medications, including a scopolamine patch and an injection of Zofran. I always appreciate it anti-nausea meds before going under because I am nauseated enough as it is without the help of anesthesia.

Once the anesthesiologists left, the vascular surgeon came to check to see how much longer until we were ready to go. We were only a few minutes away – waiting for test results at this point. The vascular surgeon asked if I had any questions, and of course I did. My biggest worry was they were going to to do surgery while I was under without talking to me about it first – just a hunch- a correct one from what was said when I had arrived at the hospital that morning. While a little awkward, I knew I had to express to them that I wanted nothing until we had more time to discuss all the options available for treatment and what  would be the best course of action with the longest results. I was also concerned about fixing one or two of the compressions, while not fixing the others, and the damage it could cause later down the road – I’ve heard hundreds of horror stories and I didn’t want to become one of them. Thankfully, the vascular surgeon agreed with my logic, but I can’t help but wonder what would have happened if I had not opened up about my concerns. Would they have done the surgery without consent? Who knows.

A minute or two after  the surgeon left, another nurse came down to escort me to the OR. We joked around about how we both needed more coffee that morning. I couldn’t even have any that morning and I was already having trouble staying awake (who needs anesthesia anyways -I’ll be asleep in minutes) I asked her to slip some coffee in my IV while I was waking up; She thought caffeine eye drops would be more effective. Our banter broke the feelings tension and  fear I was slowly building up along the way.

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As soon as we got to the OR, I was placed on the operating table, underneath the x-ray machine, and hooked up to every monitoring advice imaginable. They gave me a quick shot of versed and I was out, don’t think I last more than 10 seconds.

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I woke up in my hospital room around 10:00 A.M. The procedure didn’t take too long, but I had slept through in its entirety. I feel  a huge bandage down the side of my neck, causing me to be confused. I was so far out of it still.
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I was told they decided to enter through my jugular, instead of the femoral as planned – I know there was a reason for this, but I honestly can’t remember. The nurse tells me I have to wait at least 45 minutes until I can be discharged. She hands me water to drink and asks if I’d like to watch TV – I didn’t. I just wanted to go back to sleep, which I did.

The vascular surgeon checks in with me, telling me how the procedure went well and that they did re-verify the extent of my Nutcracker Syndrome and May-Thurner Syndrome, and confirmed that I do have Pelvic Congestion Syndrome as well. They did not look at the SMA Syndrome or the Celiac Plexus since they only focused on my veins today. I was still out of it when he was talking, but I heard him say my renal vein was at a 10. Although it wasn’t really clear, I believe he was referring to the pressure gradient of my renal vein – which anything above the number 3 is when surgical intervention is typically recommended. He said to set up an appointment in a week or two to go over surgical options. I thanked him and fell back asleep.

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Venography for Nutcracker Syndrome

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Pelvic Congestion Syndrome – Ovaries

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May-Thurner Syndrome

At exactly 10:45 A.M. my husband came into the room. He is frustrated because he couldn’t find where I was recovering. He was sent back and forth across the hospital twice before decided to just go back to the place we started, which was exactly where I was at the whole time. I chugged some water down and paged the nurse – I can go home now, right? She comes in, unhooks me from all the machines, and goes to the lockers to retrieve my clothes. I quickly get changed and it’s over. Surprisingly not too bad, but I was still out of it when I left the hospital. All I wanted, though, was coffee. Dear god, I NEED coffee. Thankfully, my husband was nice enough to stop on the way home.

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When the medications wore off that afternoon, that was when the pain actually set it. It was too bad until I tried to move in any way. You don’t realize how much you use your neck muscles for minimal movements. They advised I’d be in pain for the next 48 hours and then it should subside. The pain seems to be getting better hour by hour, but still quite uncomfortable overall. I spent the afternoon on the couch, afraid to move. I slept most of yesterday afternoon, early into bed last night, and slept in again today. Evidently I was extremely tired. I do have restrictions to follow for the next few days, such as no strenuous activities or lifting anything over 20 lbs for the next four days, but otherwise the whole thing was not too bad. 

I was able to take my bandage off tonight, which was great since it was really starting to irritate the skin underneath it. The hole in my neck doesn’t look too terrible either. I expected much worse.

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The remaining hole in my neck

Now I just have to wait until next week to decide if or when I am having surgery, depending on what they recommend.

Maybe there will be surgery for Christmas after all… I guess we’ll see.


References:

Malignant Hyperthermia Association of the United States (2015). What is Malignant Hyperthermia? MHAUS Website. Retrieved on December 04, 2015 from http://www.mhaus.org/

Society of Interventional Radiology (2015). Venography (Venogram). Radiology Info Website. Retrieved on December 04, 2015 from Radiologyinfo.org.

The Gender Bias in Medicine

A repost from my the Undiagnosed Warrior Facebook Page, but felt it needed to be shared here as well since it is such an important topic for women living with chronic illness, particularly the undiagnosed. Really, though, it hurts all of us in one way or another.This is in response to an article entitled How Doctors Take Woman’s Pain Less Seriously.


“Women are likely to be treated less aggressively until they prove that they are just as sick as male patients.”

Sadly, this woman’s story isn’t abnormal. And it’s not just a one-off or one bad hospital either. It happens every day, in multiple hospitals and doctor’s offices, to women all over the country.

“From an early age we’re taught to observe basic social codes: Be polite. Ask nicely. Wait your turn. But during an emergency, established codes evaporate—this is why ambulances can run red lights and drive on the wrong side of the road.”

“…he’d never checked back after his initial visit. He was that sure. As far as he was concerned, his job was done.”

Gender bias is everywhere in the field of medicine and it’s essentially killing millions of woman everywhere.

“Everyone we encountered worked to assure me this was not an emergency.”

Remember, though, this isn’t just a problem that affects women with chronic or invisible illness. This affects all woman. Your daughter. Your mother. Your grandmother. Your friends. Your boss. Your co-workers. Anybody.

Don’t believe me?

Read Is Medicine’s Gender Bias Killing Young Woman

“In training, we were taught to be on the lookout for hysterical females who come to the emergency room.”

These articles are just two of the many that are out there in the world.  Look it up – do some research. Ask any female that has a chronic illness. They spend more time with doctors than almost anybody.I promise that they know about this all too well, given the amount of time they spend in medical facilities.

“The presence of stress, the researchers explained, sparked a “meaning shift” in which women’s physical symptoms were reinterpreted as psychological, while “men’s symptoms were perceived as organic whether or not stressors were present.”

So why aren’t all the extremist, feminists, or politicians out fighting for this cause? For this equality? If you believe strongly in woman’s rights, educate yourself. There are bigger things to fight for than free birth control.