NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
I am an active, 49 year old woman. I have three terrific children and three wonderful grandchildren. My husband is very supportive and would do anything to help me. Although I have been a Registered Nurse for the past 20 years, I was not prepared to know how to deal with a splenic artery aneurysm (SAA). I have never known anyone who had one, or had heard of someone else that had one. I certainly don't remember reading about this in any medical journals or been asked any questions pertaining to same on a test. That is of course, until my journey began.
24 March 2007
My journey knowing that I had an SAA began in February, 2006. I had been having vague abdominal symptoms (epigastric discomfort accompanied with occasional nausea) on and off for a few years, but the symptoms became more noticeable during the summer of 2005. My symptoms were always intermittent and seemed to worsen after I ate or was very active.
Initially, I was worked up for stomach problems such as an ulcer and placed on antacids. The gastroenterologist performed an upper endoscopy that revealed gastric erosions and my symptoms were thought to be related to that. However, the report indicated that gastric erosions were likely the result of anti-inflammatory drugs or alcohol consumption, of which neither scenario fit. I discussed this with my doctor and was concerned that I had a problem in the pancreas area or gallbladder, based on my symptoms. Additional studies were ordered including a colonospy, gastric emptying study, HIDA scan and an MRCP which revealed a 2.5cm splenic artery aneurysm. Initially, it really didn't concern me as I thought it was small and never thought of a rupture. "Not me" I remember thinking, I am active and healthy. This is probably a benign condition I thought.
Neither my gastroenterologist nor my PCP, had ever treated a patient with one, so I figured out quickly that it must be a rare condition. Both were experienced physicians with approximately 48 years of practice between the two. I was advised to follow up with a vascular surgeon.
My husband and I did many web searches and I was correct in learning that indeed the SAA's are a rare condition. All of the literature that I read indicated that any SAA greater than 2.0 cm or any SAA's that were symptomatic should be surgically removed, as they can rupture and an artery that ruptures is more difficult to treat and a greater health risk than one that is treated as an elective procedure.
Surprisingly, I obtained my records for a CT scan I had performed in 2003, which revealed a 2.5cm SAA. This information was never disseminated to me, so again I was thinking, it's probably just a benign condition. From that time on, I always request a report of any test to be sent to me, so there are no errors in transmission of communication.
I was evaluated by a vascular surgeon who was honest in telling me that he had never seen an SAA in all of his 26 years of practice. He did not think my symptoms were a result of the SAA and offered to remove my gallbladder, in case the pain was related to gallbladder disease. My tests indicated that I may have sludge in the gallbladder, but there were no stones detected. My first thought was that I needed to speak to a vascular surgeon who had dealt with SAAs and that I didn't want to have my gallbladder removed unless absolutely necessary and that if necessary, it should be removed at the same time as the SAA.
I obtained a referral to see another vascular surgeon at a large university facility. I was so certain based on everything that I had read, that the vascular surgeon would probably want to operate on me the day I saw him, so I went to appointment without eating, since the previous evening, and was mentally ready to undergo a lifesaving procedure. The surgeon I saw had experience with all types of aneurysms and I felt confident. However, after he reviewed my reports and discussed my case, he indicated that surgery was not indicated for a SAA that was 2.5cm. He also did not feel that my symptoms were related to the SAA. Part of me was relieved, but mostly I felt confused and frustrated.
At this point, I was feeling like I must be overreacting to my diagnosis and that maybe my symptoms were not a problem. Although there were no guarantees that the SAA would not rupture, the second vascular surgeon I saw tried to reassure me that the SAA was stable with a calcification rim around it. He indicated that the procedure was a greater risk than a rupture.
I really tired to go about my life as though there was nothing to be concerned about regarding the SAA. The second vascular surgeon recommended that I have CT scans done annually to see if there are any SAA changes. If it grew, surgery would likely be indicated. He sent me to a general surgeon to explore why I may be experiencing the vague abdominal symptoms and I was told that it must be musculoskeletal in nature. I strongly believed that it was not musculoskeletal and felt as though maybe I was missing something.
On occasion, and in addition to my vague abdominal symptoms, I would feel a pulsating sensation under my left rib cage when I ran up a several flights of stairs or was engaged in strenuous activity. The doctors try to assure me that this was not the SAA. I was not convinced and limited climbing the stairs at a fast pace as my symptoms worsened. I knew there was something wrong, yet felt almost paralyzed with how to deal with it or manage the outcome. Hearing that it was stable, yet having unresolved and unexplained symptoms did not set me at ease.
I read the University Of West Georgia's Aneurysm and AVM web site which had 4 entries from people who had survived a ruptured SAA, had an elective repair and survived and two unfortunate losses of lives as a result of rupture. These stories captured my attention. I was certain that the doctors must be missing something. My SAA was 2.5 cm and I had symptoms that could not be related to any other source.
I also read a couple of hospital abstracts where patients were misdiagnosed or mismanaged and post mortem studies revealed the SAA ruptures.
I wrote to Sue Anne Sullivan who had a link at the end of her story on this web site. She had an elective repair for an SAA that was 0.9 cm. She directed me to Kurt Bray who had survived a SAA rupture. He provided me a wealth of information and support during many months that was instrumental in saving my life. His story is also listed on the website.
Kurt Bray provided me with the name of a vascular surgeon that he knew had performed at least one SAA procedure in my vinicity. This physician worked with the second vascular surgeon that I had seen. I live in the Philadelphia. PA vicinity and Kurt lived in the Southern CA area, almost 3000 miles away.
I scheduled the appointment to see the third vascular surgeon in March or April of 2006. Her opinion matched the second vascular surgeon's and she agreed that the SAA was stable. I was to have a follow up CT scan in August, 2006 and if there were any changes, then surgery would be considered.
The second CT scan was completed in August, 2006. The third vascular surgeon called after receiving a report to say that there were no changes. She indicated that the SAA was stable and that I should have another scan in March, 2007.
I had many days when I wondered if I would see my family at the end of the day, as I pulled out of the driveway to go to work each day. There were many days, when I had symptoms, where I wondered if it would rupture at that moment and I felt like I had a ticking time bomb. Based on what I was told by three vascular surgeons, I thought well, maybe, I was too sensitive to the fact that I had SAA. If the doctors were not concerned, then I guess I shouldn't be either. I really tried to ignore and move on in life.
In October, I began to experience more episodes of the intermittent pain. It was never severe, just there reminding me that I had some type of problem. I contacted the third vascular surgeon and she reassured me that the risk of the surgery outweighed the risk of rupture. She did say that if the pain became severe, to call her or go to the nearest emergency room.
During the first week of November, I experienced a deep pain under my left shoulder blade. Pain in my left shoulder blade was not uncommon for me as I had a prior TMJ total joint replacement several years prior. I saw my PCP, as I had in the past for shoulder manipulations. My PCP provided the spinal manipulations which helped with the muscle pain, but the deep pain radiating under my left shoulder pain was unrelenting. The pain lasted 5 days and then one day, I woke up and it was completely gone. I felt great! After the pain left though, I wondered, could it have been from the SAA? Now I thought, boy, I am obsessed with this thing and I better stop focusing on it. My PCP had expressed concerns to me in the previous months about seeking another opinion for the SAA, and I had planned to schedule another appointment before the Thanksgiving holiday. Looking back, I think the deep shoulder pain was related to the SAA. It was the only time in my life I ever experienced that particular pain.
Well, on 11/10/06, I had awoken at 3:00AM with horrendous pain under my left rib cage. I immediately thought of Kurt Bray's web story and thought, is this the SAA? Is it rupturing? Of all the scenarios that I thought about, it never occurred to me that I would awaken with pain. I woke my husband. He is a Registered ER Nurse and turned on the light. In all the year's I've known my husband, I never saw a look a fear in my husband's eyes until that moment. I was diaphoretic (sweating profusely) and very pale. My pulse was racing and I was tachycadiac.
My husband called the third surgeon's telephone number (had it programmed into his cell phone) and was connected to the Resident on call to advise that he would bring me to the hospital emergency department. I was flat on my back, ridged and unable to move from the pain. My husband tried to get me out of bed to stand, and my legs collapsed under me. I blacked out. He carried me down the stairs and placed me in the car and drove me to the emergency department 15 minutes away. We were fortunate that this occurred at 3:00AM as the roads were virtually empty during this time. During a busy work day, the travel pattern can take up to forty five minutes or longer.
In the emergency department, the doctors were concerned about a rupture. One of the emergency department attending physicians told me that the SAA could rupture at any time and if so, that I would require blood transfusions or die. I recall being angry at myself and wondering, how did I miss the opportunity to have the SAA repaired when I had a chance??? Where did I go wrong?
If I didn't know I had an SAA, I would have probably thought I was having a heart attack. The pain was off any pain scale chart.
Morphine was administered to me for pain and multiple IV's were started. An ultrasound of the abdomen reveled that the SAA was still intact. The SAA remained unchanged on the CT scan, though one of the doctors told my husband that they believed that the SAA thrombus or calcification broke and fired in to the spleen causing intense pain. Evidently the spleen had better blood flow on this scan in comparison the CT scan that was performed three months prior.
Gastroenterology was called to see me as a consult. It was felt that the pain may be from a stomach ulcer. My liver enzymes were slightly elevated, so now there was concern about a problem with my liver. My husband and I were both convinced that the episode of pain was from the SAA. At this time the doctors were ruling out other possibilities to be sure. It was a confusing and frustrating time.
I was admitted to the hospital for observation and testing. A series of inoculations were administered to protect me against meningitis, hepatitis B, and pneumonia. These vaccinations were administered in the event surgery was indicated for the SAA and my spleen would also need to be removed. The spleen is a powerhouse for the immune system. The inoculations take about two weeks to one month to be effective.
Multiple ultrasounds were performed in addition to a large series of serum blood studies and an upper endoscopy. All reported normal for anything in additional to the SAA.
My surgeon wanted to wait until the two week time period for immunizations to become effective. Now I was a little frightened, as I heard in the prior months that the risk of surgery outweighed the risk of rupture. Now I was being told that my SAA was considered to be symptomatic. I requested to go home during the waiting period, after a five day admission.
Prior to surgery, I remained on the couch, basically bed rest. The surgery took place 16 days after the horrendous pain attack. I had an open surgical procedure. The vascular surgeon checked my gallbladder and it was healthy. Interestingly, the SAA was 3.0 cm which was larger than the 2.5 cm that was always viewed on the scans. It was twisted too. Yes, I believe that I was fortunate to have symptoms and that my symptoms were related to the SAA.
I asked the vascular surgeon how many SAA the hospital sees in a year. She told me that they see one or two SAA's a year and that some years, they didn't see any. This is a very large university hospital. This condition is so rare that I believe there isn't a lot of knowledge known. I believe that there may be more people who have this condition, but upon rupture and autopsy, that it may be possible to be misread as an aortic aneurysm rupture. Anything is possible.
I am glad that I pursued the web information. If I had not, I don't think my husband and I would have been as determined to have the SAA addressed in the emergency department that day or recognized that the SAA may be the problem. Kurt Bray was a tremendous support to me and I can never thank him enough for his support and life saving information.
If you have an SAA or know someone who does, please remember that there is very little known about them. They are very rare. Seek as much information as you can and don't be afraid to address the information with your doctor. Obtain multiple opinions if necessary.
I am grateful that I had an optimal elective procedure and recovery. I did not require any blood transfusions and my spleen was saved. Although I was advised that the spleen can die up to one year post op, the surgeon felt mine looked good post op. I also have the advantage of having received the immunizations pre-surgery. I believe that the immunizations should be a standard of care for anyone once an SAA is identified, so the individual is prepared in case of immediate surgical need.
Although I am not a doctor and cannot direct medical care, I hope that you find this information helpful. If you have any questions, please email me.
All the best.
Discussion, comments, or questions: Violet Jones
© Copyright 2006 Violet Jones
All Rights Reserved - Fair Use
acknowledged
