torsdag 29 augusti 2024
Kirurgi av näsmusslorna och Empty Nose Syndrome - Marc Oliver Scheithauer
tisdag 27 augusti 2024
Komplikationer efter näsoperation: Christopher Supallas kamp med Empty Nose Syndrome
Min sons mardröm som näs-invaliserad: ”Kändes som en plastpåse var över hans över huvud” Av Joyce Cohen, publicerad 5 oktober 2023, kl. 08:06
Chris Supalla, som kämpade med nästäppa och sömnproblem, fick rådet av flera läkare att en enkel näsoperation skulle kunna hjälpa honom att få bättre vila. Men efter operationen förlorade han mer än bara sömnen.
”Han kämpade för att få luft,” berättade hans mamma, Mary Supalla, för The Post om sin sons levande mardröm. ”Han kände det som att han hade en plastpåse över huvudet.”
Tre månader senare tog Chris, 32 år gammal, sitt liv.
”Jag är så ledsen att jag lämnar er på detta sätt, men lidandet är för stort,” skrev Chris i sitt självmordsbrev. ”Min näsa känns så tom att jag inte kan känna någonting alls. Jag älskar er alltid.”
Chris Supallas sista meddelande
Chris lämnade ett meddelande innan han gick ut i trädgården där han hittades av sin familj:
"Vänligen skicka räddningstjänsten för att hämta mig från skogen där bak.
Ni behöver inte se vad som har hänt."
Christopher Supalla och Empty Nose Syndrome
Den Portland, Oregon-födde Chris Supallas dödsattest från 2021 anger dödsorsaken som ”asfyxi till följd av hängning med snara”, med Empty Nose Syndrome som en ”betydande” bidragande faktor.
Nästan 30 år efter att tillståndet först identifierades börjar ENS äntligen få mer erkännande. Den första medicinska läroboken om denna skrämmande sjukdom publicerades i år av den ansedda läkaren Dr. Eugene Kern, professor i otorhinolaryngologi vid University at Buffalo.
I början av 1990-talet, när Kern arbetade vid Mayo Clinic, blev han oroad efter att två patienter som genomgått näsoperationer berättade att de kände sig kvävda vid varje andetag. Båda tog senare sina liv.
Andra patienter beskriver den fruktansvärda känslan som att drunkna, kvävas eller bli utsatt för skendränkning.
”Dessa patienter är näskripplade,” förklarade Kern, 86 år gammal. De kan knappt sova, vaknar plötsligt när kroppen signalerar att den inte får tillräckligt med luft – trots att den gör det. Munandning hjälper inte.
ENS – en potentiellt livsfarlig komplikation av näsoperationer
ENS är en komplikation av alla näsoperationer som påverkar näsmusslorna – cylindriska strukturer i näsan som reglerar luftflödet. Turbinate-reduktion görs ibland i samband med septoplastik för en avvikande nässkiljevägg, eller som en del av en vanlig näsoperation.
CT-skanningar visar skillnaden mellan en normal näsa och en ”tom” näsa där näsmusslorna har avlägsnats kirurgiskt.
”Jag hade ingen aning om vad en näsmussla var,” säger David Troutman från Indiana, som opererades för sömnapné för sex år sedan. ”Jag litade på min läkare.”
Efter operationen var Troutman konstant utmattad, ofokuserad och rastlös – i sådan grad att hans chef körde honom till akuten.
”Jag var en skugga av mig själv,” säger han. ”Min personlighet var helt borta.”
Troutman, 54, är nu administratör för en Facebook-grupp för ENS-drabbade, där han läser ”fruktansvärda berättelser.”
”Jag förväntar mig en livslång kamp. Det finns ingen lindring, ingen respit.”
Gruppen, som har cirka 3 700 medlemmar, har dokumenterat 14 självmord under de senaste sex åren. Vissa av dessa minnesmärks på webbplatsen Nasal Cripple, en samling medieartiklar om ENS.
Ytterligare ett liv förlorat till Empty Nose Syndrome
Chris poserar här med sin familj – systrarna Kara och Laura, mamma Mary och pappa Brian – vid Lauras bröllop 2016.
”Chris kommer alltid att bli ihågkommen för sitt fantastiska och roliga liv,” skrev hans familj i hans dödsruna från 2021. ”Vi är stolta över hans många prestationer, sorgsna över hans bortgång och kommer att älska honom för alltid. Må han vila i frid.”
Den plågsamma sjukdomen förblir ett mysterium. Ingen vet hur många som drabbas, och det är oklart vem som är mest sårbar. Vissa personer klarar sig bra efter att näsmusslor har tagits bort – andra lever i konstant tortyr.
Endast ett fåtal läkare i USA försöker behandla ENS, oftast genom olika metoder för att återfukta näsan eller justera luftflödet.
”Om du tar bort en näsmussla kan du få en posttraumatisk neurogen smärta, vilket är fruktansvärt,” berättade Dr. Kern för The Post.
”Vissa människor har tillräcklig kompensationsförmåga för att klara sig i några år utan symptom, men det finns inget test för att avgöra hur näsan fungerar.”
Chris Supallas kamp innan hans död
Chris, som arbetade inom redovisning, konsulterade tre läkare innan operationen, berättar hans mamma. Han genomgick en septoplastik och mikroablation, och läkarna sa att de bara avlägsnade en millimeter av näsmusselvävnaden.
”Chris frågade om ENS och var orolig för det,” säger Mary. ”Läkarna kände till ENS men sa: ’Jag har aldrig sett det.’ De försäkrade honom att han inte skulle drabbas.”
Chris älskade friluftsliv, särskilt downhill-mountainbike, klättring och terrängkörning med sin Jeep. Här är han på en av sina många klätterresor.
Efter Chris Supallas död, två och ett halvt år sedan, bad hans föräldrar sjukhuset Oregon Health & Science University att varna patienter för ENS-risken.
”Komplikationerna är så fruktansvärda och livsförändrande att patienterna förtjänar att veta,” sa Mary Supalla. ”Chris kunde inte andas, han kunde inte sova, han kunde inte göra någonting. Han var mer rädd för att leva än för att dö.”
Sjukhusets patientombudsman skrev till familjen och lovade att utbilda läkare, medicinstudenter och personal om ENS.
”Även om vi inte kliniskt kan bekräfta diagnosen Empty Nose Syndrome, vill vi försäkra er om att vi tror på den upplevelse han beskrev.”
Men flera månader senare, när Supallas återigen bad om att patienter skulle varnas, fick de svaret:
”Som vi tidigare kommunicerat har vi inte funnit att er son hade ENS. Vi är så väldigt ledsna för er förlust, men vi kommer inte att ha vidare kommunikation om detta.”
I ett officiellt uttalande till The Post skrev OHSU:
”Vi framför våra djupaste kondoleanser till familjen Supalla. Innan operationen frågade Mr. Supalla specifikt om Empty Nose Syndrome, och hans medicinska team diskuterade tillståndet som en del av informerat samtycke.”
Efter operationen kunde ”hans vårdteam vid OHSU inte kliniskt bekräfta en ENS-diagnos.”
Chris Supalla dokumenterade sin snabba försämring i en rad hjärtskärande textmeddelanden med sin mamma Mary, medan han kämpade för att anpassa sig till sina andningssvårigheter efter operationen.
Christopher Supalla (1988–2021)
onsdag 21 augusti 2024
Evaluation of sinonasal-related quality of life of 49 patients undergoing endoscopic skull base surgery
This study aimed to assess the impact of endoscopic skull base surgery on sinonasal-related quality of life (QoL). In this summary, we focus on the effects of turbinate removal and its implications for sleep quality.
**Types of Surgery and Procedure Details:**
Endoscopic skull base surgery is a technique used to address various conditions affecting the base of the skull and surrounding areas. This procedure sometimes also involves the removal of nasal turbinates. The types of surgeries and procedures included:
**Removal of Tumors:** Both benign and malignant tumors located at the skull base.
**Reconstruction:** Repair of defects using grafts or flaps.
**Turbinate Surgery:** Partial or total removal of nasal turbinates
**Methods:**
The study included 49 patients who completed two questionnaires:
- **Sinonasal Outcome Test-22 (SNOT-22):** Measures various aspects of sinonasal health and their impact on quality of life, including nasal symptoms, facial pain, sleep disturbances, and emotional well-being.
- **Empty Nose Syndrome 6 Item Questionnaire (ENS6Q):** Assesses symptoms related to Empty Nose Syndrome, such as nasal dryness, diminished airflow, and nasal crusting.
**Results:**
1. **Overall Quality of Life Scores:**
- The average SNOT-22 score was 25.1, indicating moderate to severe impact on health and overall quality of life.
- The average ENS6Q score was 6.51, with 18.4% of patients scoring above 10.5. Displaying a high risk of getting Empty Nose Syndrome (ENS) after Turbinectomy and turbinate reduction.
To get diagnosed with Empty Nose Syndrome (ENS) based on the ENS6Q, a score of 11 or higher is generally used as the threshold. The total score ranges from 0 to 30, with each of the six questions scoring up to 5 points. A score above this threshold suggests that the patient is experiencing symptoms severe enough to be considered as having ENS.
2. **Impact on Sleep:**
- Sleep-related symptoms were notably severe across the board. Patients frequently reported issues such as difficulty falling asleep, waking up during the night, and feeling tired during the day.
- Among the different groups, those with a history of re-radiotherapy had significantly higher scores for sleep-related issues compared to patients with no history of radiotherapy. This suggests that radiotherapy may have a long-term impact on sleep quality. These patients also had a higher SNOT-22 score related to emotional well-being.
**Conclusions / summary:**
**Turbinate Removal and Sleep:** According to the study, 18.4% of patients who had their turbinates removed or reduced by radio frequency had a score higher than 10.5 on the Questionnaire: (ENS6Q), indicating a high risk of Empty Nose Syndrome (ENS). It was also noted that turbinectomy and radiofrequency treatment led to noticeable sleep disturbances. Patients experienced significant sleep issues, which were further exacerbated in those with a history of radiofrequency treatment
**Overall Quality of Life:** The study highlights that patients undergoing this surgery generally experience moderate to severe nasal symptoms and sleep disturbances.
**Radiotherapy Impact:** A history of radiotherapy negatively impacts quality of life, particularly affecting sleep and emotional health. Patients with re-radiotherapy history experienced worse outcomes in these areas compared to those without such history.
Surgical Treatment for Empty Nose Syndrome
This research study, led by Dr. Steven M. Houser, delves into the complex and often misunderstood condition known as Empty Nose Syndrome (ENS), an iatrogenic disorder that arises as a consequence of nasal surgeries, particularly turbinate resections. ENS is characterized by a paradoxical situation where patients, despite having a seemingly open nasal airway, experience a profound sense of nasal obstruction and difficulty breathing. This condition is perplexing because it lacks clear, objective diagnostic criteria, making it a challenge for otolaryngologists to diagnose and treat.
### Understanding Empty Nose Syndrome
ENS is primarily caused by the excessive removal of turbinate tissue during nasal surgeries, which disrupts the normal nasal airflow and impairs the function of the nasal mucosa. Turbinates are crucial structures in the nasal cavity that regulate airflow, humidify, filter, and warm the air before it reaches the lungs. When these structures are removed or significantly reduced, patients often lose the sensation of airflow in their noses, leading to symptoms that can be as distressing as they are difficult to describe. Common symptoms include a sensation of nasal obstruction despite an open airway, shortness of breath, dryness, crusting, and a feeling of suffocation. These symptoms are often accompanied by significant psychological distress, including anxiety, depression, and a reduced quality of life.
### The Study’s Approach and Methods
The study involved eight patients diagnosed with ENS, who were treated with a surgical intervention aimed at alleviating their symptoms. The intervention involved the submucosal implantation of acellular dermis, a tissue graft material designed to simulate the missing turbinate tissue. The patients’ symptoms were evaluated before and after the surgery using the Sino-Nasal Outcome Test (SNOT-20), a validated questionnaire that measures the severity of nasal symptoms.
### Key Findings and Discoveries
The results of the study demonstrated a statistically significant improvement in the patients' symptoms following the surgical intervention. The SNOT-20 scores, which assess various nasal symptoms including nasal obstruction, facial pain, and sleep quality, showed marked improvement after the implantation of the acellular dermis. Importantly, the study also noted improvements in symptoms related to mental health, such as sadness, irritability, and sleep disturbances, which are often exacerbated by ENS.
The study highlighted several critical insights:
1. **Subjective Improvement**: Most patients reported a subjective improvement in their breathing and overall quality of life after the surgery, even though the physical changes in their nasal anatomy were subtle.
2. **Psychological Impact**: The psychological burden of ENS is profound, with many patients experiencing depression and anxiety due to the persistent and distressing nature of their symptoms.
3. **Challenges in Diagnosis and Treatment**: The study underscored the difficulties in diagnosing ENS due to the lack of objective tests and the reliance on patients’ subjective experiences. However, it also pointed out that these symptoms are real and stem from a physical alteration in the nasal anatomy.
### Conclusions and Implications
The study concludes that reconstructive surgery using acellular dermis can offer significant relief to patients suffering from ENS. However, it also emphasizes the importance of careful patient selection and thorough preoperative assessment, including the use of the cotton test to predict the potential benefits of the surgery. The findings suggest that, while ENS is a challenging condition to treat, surgical interventions that aim to restore the nasal anatomy can lead to meaningful improvements in patients' symptoms and quality of life.
### Reflections on ENS and Future Directions
ENS remains a complex and multifaceted condition, with significant implications for patients' physical and psychological well-being. This study contributes to the growing body of evidence that ENS is a legitimate and serious complication of nasal surgery, one that requires careful consideration and management. The authors suggest that future research should focus on developing more precise diagnostic criteria and exploring additional treatment options that can further improve the outcomes for patients with ENS.
In summary, this research provides valuable insights into the nature of ENS and highlights the potential for surgical intervention to offer relief for patients who suffer from this debilitating condition. It also calls for greater awareness among clinicians about the risks of turbinate surgery and the need for conservative approaches to avoid the development of ENS.
Empty Nose Syndrome: When the Nose Is Worse After Surgery (Archives of Otorhinolaryngology-Head & Neck Surgery)
This research study provides an in-depth exploration of Empty Nose Syndrome (ENS), a rare but serious condition that can occur following nasal or sinus surgery, particularly after procedures that remove or reduce the size of the nasal turbinates. ENS is characterized by a paradoxical sensation where patients feel as though they cannot breathe, despite having wide nasal passages and normal oxygen saturation levels. This condition not only severely impacts the physical well-being of patients but also profoundly affects their mental health and overall quality of life.
**Key Functions of the Nasal Turbinates:**
The nasal turbinates play a crucial role in the respiratory system. They are responsible for warming, humidifying, and filtering the air we breathe before it reaches the lungs. Additionally, they help direct the airflow within the nasal cavity to ensure that air reaches specific sensors that communicate to the brain that breathing is occurring properly. These functions are essential for maintaining a healthy respiratory system and ensuring the body's proper oxygenation.
**Pathophysiology of ENS:**
When the turbinates are removed or excessively reduced, as in the case of ENS, the nasal cavity becomes abnormally wide. This alteration leads to significant changes in air pressure and flow, disrupting the sensory feedback mechanisms that are essential for normal breathing perception. Patients with ENS often report a sensation of suffocation or an inability to get enough air, even though their nasal passages are physically unobstructed. This mismatch between the physical state of the nose and the patient's sensory experience can lead to severe anxiety, distress, and a decreased quality of life.
**ENS and the Limbic System:**
Recent studies suggest a connection between ENS symptoms and the limbic system, the part of the brain involved in emotional processing. The distress experienced by ENS patients may be linked to a disruption in the normal sensory input that the brain expects from the nasal passages. Additionally, the lack of stimulation of certain nerve fibers, particularly those from the Cranial Fifth Nerve, may contribute to the sensation of not being able to breathe, further exacerbating the patient's discomfort and anxiety.
**Complications Associated with ENS:**
ENS is not only a sensory disorder but can also lead to physical complications. The absence of the turbinates disrupts the normal mucociliary clearance system, which is responsible for trapping and expelling bacteria, dust, and other particulates from the nasal passages. Without this protective mechanism, patients are more prone to recurrent infections, crusting, and other respiratory issues. These complications can further diminish the quality of life and contribute to ongoing physical discomfort.
**Treatment Approaches:**
The treatment of ENS is challenging and often requires a multidisciplinary approach. Various methods have been employed to alleviate symptoms, though results can be inconsistent. Some of the treatment options include:
1. **Education and Cognitive Therapy:** Patients are often initially dismissed or misdiagnosed due to the paradoxical nature of their symptoms. Educating patients about the condition and providing cognitive therapy can help reduce anxiety and improve their understanding of their symptoms, which may lead to some relief.
2. **Moisturizing and Irrigation:** Regular use of saline sprays, Lactated Ringer’s solutions, and pulsed nasal irrigation can help keep the nasal passages moist, reduce crusting, and mimic the function of the absent cilia, which helps clear debris and bacteria from the nasal cavity.
3. **Infection Management:** In cases where infections are common, topical antibiotics such as 2% mupirocin ointment can be effective. Additionally, other topical treatments like Premarin Vaginal Cream have been used to thicken the nasal membranes and increase mucus production, providing some symptomatic relief.
4. **Surgical and Injectable Interventions:** In more severe cases, hyaluronic acid gel injections into the nasal cavity may temporarily restore proper airflow and provide relief. For more permanent solutions, surgical reconstruction using materials like AlloDerm to simulate the missing turbinate tissue has been explored.
**Conclusions and Learnings:**
The study underscores the importance of understanding the complex role that nasal turbinates play in both respiratory function and sensory perception. The removal or reduction of turbinates, while sometimes necessary to improve airflow in cases of obstruction, can lead to devastating consequences if not carefully considered. ENS is a reminder of the delicate balance required in nasal surgeries and highlights the need for cautious surgical planning and patient education.
Moreover, the findings suggest that treating ENS requires a holistic approach, addressing both the physical and psychological aspects of the condition. While the current treatments provide varying levels of relief, the ongoing distress and reduced quality of life experienced by many patients indicate a need for further research into more effective and lasting solutions. The study also emphasizes the importance of early recognition and intervention to prevent the progression of symptoms and to support patients in managing this life-altering condition.